sharing evidence, supporting action

1 | Proceedings of the NDC Dementia Knowledge Exchange Forum | 2013

SHARING EVIDENCE, SUPPORTING ACTION Proceedings of the NDC Knowledge Exchange Forum 2013


Published March 2014 by the National Dementia Cooperative, with the addition of the chapter by Howard Vickridge Originally published February 2014 not including the chapter by Howard Vickridge

Attribution-NonCommercial-NoDerivs creativecommons.org/licenses/by-nc-nd/nz This licence allows others to download this book and the individual chapters and share them with others as long as they credit the author, but they can’t change them in any way or use them commercially. This document is available on the following website: NDC.HIIRC.ORG.NZ


SHARING EVIDENCE, SUPPORTING ACTION Proceedings of the NDC Dementia Knowledge Exchange Forum 2013 National Dementia Cooperative, 21 – 22 November 2013 University of Auckland, Tamaki Campus, Auckland, New Zealand Edited by Marja Steur and Susan Gee


Photo Credits Cover, p.19: Shadowbox Ps. 7, 87, rear cover: ©Alzheimers Canterbury P. 23: Nottingham Post P. 29: allaboutagingllc.com P. 40: Photo courtesy of author Eileen Smith P. 45: Photo courtesy of author Helene Ritchie P. 49: manashomecare.com P. 62: Photo courtesy of author Lisa Cooke P. 79: St Catherines Standard P. 83: IHC P. 91: John Michael Kohler Art Center P. 99: Anita Edridge for the Guardian P. 109: stroke4carers.org P. 117: Photo courtesy of author Howard Vickridge


Contents Foreword Marja Steur and Susan Gee ......................................................................................................... 7 Icebergs and tsunamis: Assumptions & limitations of New Zealand’s dementia demographic data Dryden Badenoch ........................................................................................................................... 9

Unmet Need and Cognitive Decline: Innovative Support and Integrated Education of General Practice Team Rachael Calverley and Lynelle Dagley .................................................................................. 19

Cognitive impairment clinical pathway pilot: Waitemata District Health Board Karen Holland ................................................................................................................................ 23

Driving assessment and beyond: An observational study Emme Chacko .............................................................................................................................. 29 From the black hole to new frontiers. The challenges of young onset Alzheimer’s Eileen Smith .................................................................................................................................. 39 Peter and me: A love story becomes a carer’s anguish Helene Ritchie .............................................................................................................................. 45 Walking in Another’s Shoes in home based care Tracey Hawkes and Susan Gee .............................................................................................. 49 Enabling independence in a Stage 3 unit Lisa Cooke ..................................................................................................................................... 59


Coming to our senses. Occupation focused sensory assessment, implementation and research – An interdisciplinary approach Marlies Dorrestein, Tina Chivers, and Margaret Fincke ................................................ 67

“Our residents don’t live in our facility, we work in their home”: Our journey towards resident-centred care. Jenny Prentice and Trish Shallard ....................................................................................... 79

Learning to do things differently: Innovations within an intellectual disability service framework Colene Herbert ............................................................................................................................. 83 Artzheimers Darral Campbell .......................................................................................................................... 87

Effective client-focussed dementia day programmes in the community: Improving the quality of life for people living with dementia and their families Annie Weir ..................................................................................................................................... 91

Developing dementia friendly communities in New Zealand Karen Smith ................................................................................................................................... 99 ‘Come listen to me…’ – using the TimeSlips method to improve quality of life and social identity. Annabel Grant ............................................................................................................................ 109

Blokes’ Club: Facilitating a social club for men with younger-onset dementia. Howard Vickridge ..................................................................................................................... 117


Foreword More than 200 people came together in November 2013 for the first National Dementia Cooperative (NDC) Knowledge Exchange Forum. These proceedings are a tangible reminder, thanks to the many speakers who gave us a written version of their presentation. Both the forum and the proceedings exemplify what the NDC is all about: collaborating with like-minded people and sharing knowledge across professional and geographical boundaries. At the forum we learnt from each other, and made connections to last beyond the two days. We hope that the thoughts, practice examples, and references in these proceedings will inspire you and help you in your efforts to improve services for people affected by dementia. Marja Steur and Susan Gee


Forum sponsors

The National Dementia Cooperative wishes to thank the following organisations for their generous support of the forum:

Platinum Sponsor

Forum partner

Gold sponsor

Silver sponsors


Icebergs and tsunamis Assumptions & limitations of New Zealand’s dementia demographic data 1. Dryden Badenoch There is a dearth of real prevalence, incidence, diagnostic and prognostic data for dementia in New Zealand. All of the commonly quoted figures are estimates derived from other estimates. In the absence of hard data, these estimates are informing strategy, which dictates service development, which in turn shapes clinical practice. This is an overview of the key prevalence, incidence, diagnostic and prognostic research, highlighting the assumptions and limitations of these studies. How likely is it that we are working from under- or over-estimates of the real problems?

Twenty years ago, I first read And The Band Played On, by the journalist Randy Shilts. The title refers to the band of the RMS Titanic, who played on — to calm the passengers — while the ship was sinking; all consequently lost their lives. The book isn't about the sinking of the Titanic; it's about the HIV/AIDS epidemic. By the time the book was published in 1987, thousands of people had already died, and TV ads were warning that those deaths were just ‘the tip of the iceberg’. Today, we're facing another watery catastrophe: a ‘tsunami of dementia’.

…in the next 10 years, Ministers of Health will be worrying more about …the tsunami of people with dementia than any other issue. Hon. Tony Ryall, NZ Minister of Health, 2012 When I joined the Sector Advisory Group for the National Dementia Care Pathway Framework, I was told — in no uncertain terms — that the scale of the problem made specialist Memory Services impractical, that we shouldn’t aim for early diagnosis but must settle for earlier diagnosis, that dementia diagnosis and management must henceforth be the responsibility of primary care services: GPs and their staff. I wasn't convinced, but I didn’t know the national picture: how many people are living


with dementia, how fast is this number growing, etc. So I started reading anything I could find on the demographics of dementia in New Zealand. At first I was impressed by the consistency of the statistics in the documents I read. Then I realised that this was a false consensus. They were all quoting the same source: the Dementia Economic Impact Report commissioned in 2008 by Alzheimer’s New Zealand from Access Economics of Australia. And the numbers didn’t add up.

Dementia in New Zealand Key statistics The Dementia Economic Impact Report states that, in 2008, there were an estimated 40,000 New Zealanders living with dementia and an estimated 12,000 new cases per year. It also states that people with dementia survive for an average of 7-10 years after diagnosis. If you take the number of people living with a condition and divide by the number of new cases per year, you should get — roughly — the average time people survive with the condition. But 40,000 divided by 12,000 is nowhere near 7, let alone 10. Of course, the population of people living with dementia isn't fixed: it's growing. The report estimates the increase at 1,500 per year. But even that doesn't balance the equation. To reconcile the prevalence, incidence and survival times quoted in the report, the number of people in New Zealand living with dementia would have to be increasing not by 3% per year, but by 20% per year. The number of people living with dementia in

New Zealand would have to have doubled in the past 5 years. I think we’d have noticed. Survival time The survival time quoted in the report comes from a paper by Warner & Butler published in 2000. I couldn't find a copy anywhere, so I've no idea how that figure was derived. Still, that was 13 years ago, so there should be more recent research to corroborate the value. In 2012, Rountree et al reported an average survival time for people with Alzheimer-type dementia of 11.3 years, but that's only for Alzheimer’s and we're interested in all types. In 2008, Xie et al reported an average survival time of 4.5 years for all types of dementia. In 2001, however, Wolfson et al noted a problem with studies such as Rountree et al's and Xie et al's. Such studies recruit their participants from larger projects where people's mental and physical health is being checked every two years or so. People who are found to have developed dementia at one of these checkups are then tracked until they die. Their survival time is estimated as the time between their death, and a point halfway between their last ‘clear’ checkup and their first ‘impaired’ checkup. Figure 1: Survival time with dementia  measured in longitudinal studies


Wolfson et al highlighted a ‘length bias’: people who both develop dementia and die in the two years between checkups will not be counted, resulting in an overestimate of survival time. Wolfson et al suggested a mathematical correction for this length bias, resulting in a survival time for all types of dementia of only 3.3 years. This is a familiar figure (40,000 divided by 12,000). Neither Xie et al nor Rountree et al used Wolfson's correction however, despite acknowledging the problem. In 2010, Rait et al looked for people on GPs’ lists who had died with a diagnosis of dementia, and tracked them back through their notes to the first mention of dementia. The average survival time was 6.7 years for people in their 60s, falling to 1.9 years for people in their 90s. This makes sense. Someone aged 65 can, on average, expect to live twenty more years; someone aged 85 can expect to live another five. At all ages, dementia is a life-shortening condition. Table 1: Survival time with dementia in years, by age group

Xie et al's survival times for each age group were at least a year greater than Rait et al's, supporting Wolfson's idea of a ‘length bias’. Rait et al didn't give an overall survival time for dementia, but it should be a year or so lower than Xie et al's, approximately 3–3.5 years. This value does fit with the prevalence and incidence estimates in the Dementia Economic Impact Report. But it is half the value used in the report. If the survival time was incorrect, can we trust the prevalence and incidence estimates?

Double checking Prevalence There are three ways of determining the prevalence of a condition: 1. The simplest is to assess everyone and tot up the number of people found to have the condition. This tends to be impractical, not least because of cost. 2. A cheaper approach is to assess everyone in a representative sample of the population, and assume that the rate at which the condition occurs in the sample is the same as in the whole population. 3. The cheapest approach is to use prevalence rates already determined in another population, e.g. the UK or US. And this is what Access Economics did. They used a meta-analysis of meta-analyses of dementia prevalences in European countries from the 1940s to the 1990s (Wancata et al, 2003) to construct a model into which they could plug a breakdown of the New Zealand


population by age, and thereby estimate the prevalence of dementia in New Zealand. They had already used the same model in 2005 for a report on dementia in Australia. In 2010, Anstey et al questioned this model’s accuracy, noting that both the techniques of meta-analysis and the diagnosis of dementia had changed significantly over the halfcentury covered by Wancata et al’s metaanalysis of meta-analyses. In a 2011 update to the Australian report, Access Economics — now owned by Deloitte — acknowledged Anstey et al's criticism, but argued that there was no better data available and used the same model again. Six months later, in an update to the New Zealand report, they stated that they would incorporate some new data into their model, but to differing degrees for different age groups, ranging from ‘not at all’ through ‘three parts old data to one part new data’, up to ‘one part old data to one part new data’. Quite how they decided upon these different ratios isn’t entirely clear. Could there be a better estimate? Prince et al (2013) offered a meta-analysis of more recent prevalence studies from around the world, between 1980 and 2009. They reported dementia prevalence as 5-7% of the vulnerable population in most world regions; more (8.5%) in Latin America and less (2-4%) in sub-Saharan Africa, for reasons yet to be established. So dementia could, at the time of the report, have affected anywhere between 33,000 and 47,000 New Zealanders, a difference of roughly 700 people per Health Board - which is a lot of people.

How is that figure growing? As part of their criticism of Access Economics' model, Anstey et al (2010) discussed a number of modern Australian data sets, one of which they set aside as potentially unreliable. This was the results of the Australian National Surveys of Mental Health conducted in 1997 and in 2007. At first glance, the figures do appear to be all over the place, but rearranging the data, not by age group, but by year of birth, reveals an interesting pattern: dementia seems less prevalent amongst people born in the 1930s than in the 1920s. Table 2: Australian National Surveys of Mental Health dementia prevalence as a percentage of age group

Prevalence is a difficult measure with which to work: introducing a life-prolonging treatment will increase the prevalence of a condition, while using less sensitive tests will decrease it. Matthews et al (2013) repeated a 1990s study of dementia prevalence in England using the same diagnostic tests as were used in the 90s. In the original study, the percentage of people with dementia was found to increase with age, as we would now expect. In their recent


repeat, the percentage of people with dementia still increased with age, but for almost every age group, the percentage of people with dementia was less than for people of the same age twenty years ago. Figure 2: Cognitive Function & Ageing Studies I & II dementia prevalence as percentage of age group

population and note everyone who develops dementia; monitor a subset and apply the rate in the subset to the whole population; and use rates determined in other countries. Access Economics again used data from Wancata et al’s (2003) meta-analysis of metaanalyses of Europe to model the incidence of dementia in New Zealand (and Australia). In their 2012 update, they stuck with this model. After all, it's not likely that people are becoming less prone to develop dementia, is it? In 2010, Rocca et al reviewed five studies, all of which found trends towards fewer people of a given age developing dementia than in the past. None of these trends was statistically significant, however.

This means that the estimated number of people living with dementia in England today is much the same as it was twenty years ago, although an increasing — and increasingly elderly — population would have led us to expect a 30% increase!

In 2012, Schrijvers et al also found a nonsignificant trend toward fewer new cases of dementia than in people of the same age twenty years ago. They did, however, find that people today have significantly greater brain volumes than people of the same age twenty years ago. This might imply that more recent generations have healthier, more robust brains, less likely to develop vasculartype dementias.

Could this also be true of New Zealand? We don't know. But for now, we not only can’t say for certain how fast the number of people living with dementia is increasing, we can't even be sure that it is increasing (and, if it isn’t, whether and when it will in the future).

The incidence of dementia may be changing. For now, all we can say is that, if incidence is as variable as prevalence, Prince et al’s (2013) findings would lead us to expect anywhere between 10,000 and 14,000 new cases of dementia per year in New Zealand.

Incidence What about the incidence: the number of new cases every year?

Inadequate information So, we can't be sure of the prevalence of dementia in New Zealand, we can't be sure how the prevalence is changing — if, indeed, it is — and we can't be sure of the incidence,

As with prevalence, there are three ways of measuring incidence: monitor the whole


which may also be changing. It seems that all we can be sure of is the survival time we calculated earlier. Except…

Dementia Diagnosis The Mini Mental State Examination In 1923, Edwin Boring (who, by all accounts, wasn’t), offered his definition of ‘intelligence’: Intelligence is what the tests test. On reading the prevalence, incidence and survival time literature, it’s hard not to come to a similar conclusion about dementia:

instrument to confirm their subjective impressions. Dementia diagnosis is hard Mitchell et al (2011) presented a metaanalysis of GP dementia diagnoses which was widely publicised. The finding that received all of the attention was that GPs miss a quarter of the dementia cases on their lists, and don't offer a diagnosis of dementia in half of the cases of which they are aware. So if you actually have some form of progressive cognitive impairment there's a 25% chance that your GP will never discover this and a 40% chance your GP is aware, but isn't telling you.

Dementia is what the MMSE tests. The Mini Mental State Exam (MMSE) was first published in 1975. The authors, Folstein, Folstein & McHugh, warned that ‘the MMS [sic] cannot be expected to replace a complete clinical appraisal’ and yet it is the MMSE that is used in the vast majority of prevalence and incidence studies to ‘diagnose’ dementia. The MMSE was developed as a fast cross check for a psychiatrist's subjective impression of a patient's cognitive functioning. As a means of diagnosing dementia, it's not that great: it can miss up to 25% of cases and misdiagnose up to 40% of cases with a dementia they don't have. The MMSE may not detect common sub-types of dementia (e.g. fronto-temporal dementia) and is biased by age, education and ethnicity (U.S. Preventive Services Task Force, 2003). So imagine my surprise when I discovered that many GPs and physicians make dementia diagnoses without using even this flawed

The finding that didn't receive so much attention was that, for every case of dementia GPs miss, they mistakenly diagnose two other people with dementia. So if you have been given a diagnosis of dementia by your GP, there's a 40% chance you don't actually have dementia. In New Zealand, that could mean 6,000 people every year not only beginning treatment for — and using services for — dementia they don't have, but also not being treated for whatever is their real problem. This is not a criticism of GPs. Dementia diagnosis is hard, even for the specialists. A recent study found that geriatricians diagnosed the wrong type of dementia in onethird of the cases they saw. It is the idea that dementia is a diagnosis that can be made by lone non-specialists, rather than a specialist multidisciplinary team, that cases which appear simple actually are simple, that leads inevitably to these sorts of figures.


Survival time again I'm stressing this point because our value for dementia survival time was derived primarily from analysis of GP case records which, according to Mitchell et al, could be missing up to 25% of actual dementia cases and, of the people included, up to 40% may not have dementia. So, really, we don't have any idea of the prevalence of, incidence of or survival time for dementia in New Zealand, now or in the future.

What we know we don’t know A tsunami of dementia? When you're facing a tsunami, it's not that hard to figure out what to do: get far enough out to sea or to high enough ground and you can ride it out in safety. The trick, of course, is getting sufficient warning. Are we facing a ‘tsunami’ of dementia? I don't think so. I think we're facing another iceberg. And the defining characteristic of an iceberg is not that what you can't see is bigger than what you can see, the defining characteristic is that what you can see is no guide at all to the shape of what you can't see. So you can set what you think is a safe course and still be heading straight for disaster. Looking ahead Access Economics have said, in every one of their reports, that we need hard data on dementia in New Zealand, especially given that Europe and Australia don't have significant populations of Maori people and we do. We know next to nothing about

dementia in Maori, but then we know very little about dementia in any New Zealanders. There are three things we need to do. 1. We need to stop talking with certainty, as if we know what we're talking about. If I tell you that there are 50,000 people living with dementia in New Zealand and this number grows by 1,500 every year, hopefully you will say ‘we must do something about this’. Whereas if I tell you that there's probably at least 35,000, but maybe no more than 60,000, people living with dementia in New Zealand, and that this number might be increasing or it might not, and if it isn't now then it might in the future but we're no longer sure how or when, you're more likely to say ‘shouldn't we maybe find out a bit more about what's happening?’ You'll be correspondingly less likely to propose radical changes to our services to deal with a ‘tsunami’ that may not be happening, and may be less severe than we’ve thought, if and when it does happen. 2. We need to have a serious public debate about a dementia register: not a register of people with dementia who are willing to participate in research about dementia, but a register of all people with dementia, detailing how they were diagnosed and what happens subsequently. The scientific potential would be incredible: so too would be the potential for abuse of human rights. We need to start this debate now. 3. All of the published research on dementia prevalence, incidence, and survival times has flaws which are repeated again and again. We need a handbook or guidebook


for researchers and funders of research to ensure that investment in New Zealand research won't be squandered by repeating the same old mistakes again and again. These flaws are, in large part, due to methodologies which attempt to cut costs, but there's no economy in cheap, meaningless research. Calming the passengers We don't have to do any of these things. We can carry on with our day-to-day responsibilities without thought of the course being set for us. We must then hope we don't one day find ourselves in the midst of a disaster which could have been anticipated, had we looked ahead, with nothing to do now but play on, keeping everyone else calm as we go under. I can't play a note, and I never learned to swim. Please, let's not be the band.

References Access Economics. (2005). Dementia estimates and projections: Australian states and territories. Scullin, Australia: Alzheimer’s Australia. Access Economics .(2008). Dementia Economic Impact Report 2008. Wellington, NZ: Alzheimer’s New Zealand. Anstey, K. J., Burns, R. A., Birrell, C. L., Steel, D., Kiely, K. M., & Luszcz, M. A. (2010). Estimates of probable dementia prevalence from population-based surveys compared with dementia prevalence estimates based on meta-

analyses. BMC Neurology, 10(1), 62. Deloitte Access Economics. (2011). Dementia across Australia: 2011-2050. Report for Alzheimer’s Australia. Scullin, Australia: Alzheimer’s Australia. Deloitte Access Economics. (2012). Updated Dementia Economic Impact Report 2011. Report for Alzheimer’s New Zealand. Wellington, NZ: Alzheimer’s New Zealand. Folstein, M.F., Folstein, S.E. , & McHugh, P.R. (1975). Mini Mental State: A practical method for grading the cognitive status of patients for the clinician. Journal of Psychiatric Research, 12, 189-198. Matthews, F.E., Arthur, A., Barnes, L.E., Bond, J., Jagger, C., Robinson, L. & Brayne, C. (2013). A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study 1 and II. Lancet, 382, 1405-1412. Mitchell, A. J., Meader, N., & Pentzek, M. (2011). Clinical recognition of dementia and cognitive impairment in primary care: a meta-analysis of physician accuracy. Acta Psychiatrica Scandinavica, 124(3), 165–183. Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W. & Ferri, C.P. (2013). The global prevalence of dementia: a systematic review and meta-analysis. Alzheimer’s & Dementia, 9, 63-75 Rait, G., Walters, K., Bottomley, C., Petersen, I., Iliffe, S., & Nazareth, I. (2010). Survival of people with clinical diagnosis of dementia in primary care: cohort study.


BMJ, 341(2), c3584–c3584. Rocca, W. A., Cha, R. H., Waring, S. C., & Kokmen, E. (1998). Incidence of Dementia and Alzheimer's Disease. A Reanalysis of Data from Rochester, Minnesota, 1975– 1984. American Journal of Epidemiology, 148(1), 51–62. Rountree, S. D., Chan, W., Pavlik, V. N., Darby, E. J., & Doody, R. S. (2012). Factors that influence survival in a probable Alzheimer disease cohort. Alzheimer's Research & Therapy, 4(3), 119. Schrijvers, E. M. C., MD, Verhaaren, P. F. J., Koudstaal, M. P. J., MD, Hofman, P. A., et al. (2012). Is dementia incidence declining? Neurology, 78, 1456–1463. Shilts, R. (1987). And the Band Played On: Politics, People, and the AIDS Epidemic. New York, NY: St. Martin's Press. U.S. Preventive Services Task Force. (2003). Screening for Dementia: Recommendations and Rationale. Annals of Internal Medicine, 138(11), 925-926. Wancata, J., Musalek, M., Alexandrowicz, R., & Krautgartner, M. (2003). Number of dementia sufferers in Europe between the years 2000 and 2050. European Psychiatry, 18, 306-313. Warner, J. & Butler, R. (2000). Alzheimer’s Disease. Clinical Evidence, 3, 419-425 Wolfson, C., Wolfson, D. B., Asgharian, M., M'Lan, C. E., Østbye, T., Rockwood, K., & Hogan, D. B. (2001). A reevaluation of the duration of survival after the onset of dementia. New England Journal of Medicine, 344(15), 1111–1116.

Xie, J., Brayne, C., Matthews, F. E., and the Medical Research Council Cognitive Function and Ageing Study collaborators. (2008). Survival times in people with dementia: analysis from population based cohort study with 14 year follow-up. BMJ, 336(7638), 258–262.

Author Dryden Badenoch, Consultant Clinical Psychologist, Relaxed Therapy, Wellington Address correspondence to: [email protected]



Unmet need and Cognitive decline Innovative Support and Integrated Education of General Practice Team 2. Rachael Calverley and Lynelle Dagley As population size increases accompanied by an aging demographic, the number of people living with dementia is equally set to burgeon. International literature points to a disproportionate number of community dwelling adults living with undiagnosed dementia. The reasons for delay or absence of clinical assessment and diagnosis are many and varied. The social, personal and health system benefits of diagnosis are also well documented. Support and education to address barriers to diagnosis in primary care, resourcing and inter-service relationship building, plus an electronic clinical decision support tool to expedite and further enable general practice teams are amongst the strategies incorporated in this pilot project. community. In 2013 2010,focused the inception Thepresentation Beginnings ... NDC Phase 1 This at the Knowledge Exchange Forum November on theof a GNS based in primary care, population The Waitemata District Health (WDHB) electronic decision support toolBoard named Cognitive Decline Assessment Tool forusing primary care, screening at a general practice level, was Gerontology Specialist (GNS) role is well (CoDA). This Nurse partially developed tool, incorporated in the dementia toolkit (education package by Health Workforce Zealand established as a supports vital component the teams in the funded and resources), general of practice recognition and diagnosis of New dementia in (HWNZ) in collaboration with University of assessment and service provision package their enrolled populations. Auckland, WDHB and Waitemata Primary that supports older adults living in the Health Organisation (WPHO). The purpose of


this pilot project was to develop and trial a model for this advanced clinical nurse role in primary care with a preventative and early intervention focus. The GNS was employed and situated at WPHO providing support, education, population screening, comprehensive assessment and care planning across three general practices. A description of this role (Health Workforce New Zealand, 2012) and the Phase I evaluation report (King et al., 2011) are available through the Health Workforce New Zealand website. A number of findings and recommendations flowed from this initial phase including identifying a large number of the cohort with unassessed/undiagnosed cognitive decline. This group were not receiving education, support or guidance and many experienced stress, distress and were very unsure where (or if) to seek support. Additionally, a larger than expected number of people with low mood/depression that had not been addressed was noted. HWNZ, WDHB and WPHO collaborated and jointly funded a second phase with three discrete components.

Phase 2 The three components of the GNS in Primary Care Project (Phase 2) were: 1. Improve transition of care across care boundaries for community dwelling older adults through the addition of GNS assessment and care planning following hospital discharge. 2. Demonstrate suitability of Integrated GNS in Primary Care model (successfully evaluated in Phase I) in ethnically and

socio-economically diverse older adult populations. 3. Develop a dementia toolkit to support general practice The Dementia Toolkit consists of education and up-skilling the general practice team (doctors, nurses, health care assistants (HCA), primary care practice assistants (PCPA), receptionists and other staff identified by the general practice team (GPT)), resources (print and electronic), connecting with local organisations and services, and providing electronic decision support software to the GPT. This inclusive, team-based approach acknowledges the knowledge and observation skills of the entire team, and the important part all play in the process of recognising, flagging, reporting, assessing and diagnosing someone experiencing cognitive decline so they can be connected to appropriate assessment and support agencies and services.

CoDA The Cognitive Decline Assessment Tool for Primary Care (CoDA) was developed to support the assessment and diagnosis process. This tool is still in its infancy and requires further funding to optimise current functionality in a more user-friendly and intuitive format. The ultimate version of this tool will extend electronic support to general practice that encompasses both pre- and post-assessment. Pre-assessment content is an essential function of primary care and includes risk minimisation and related patient education. Post-assessment is the largest component, including quality management through the disease trajectory from diagnosis to death and beyond (for the family). The later stages are generally supported by


secondary and hospice services, and residential care facilities; however, general practitioners frequently remain involved with ‘their’ patients through this journey. CoDA is designed to support recognition, diagnosis, management, referral, record keeping and documentation, and to expedite the process in the time-poor general practice setting. A number of features are built into the tool to support each function. It reflects the dementia pathway stages identified in the National Care Pathway Guideline (Ministry of Health, 2013). A number of assessment tools are built into CoDA for electronic completion. All notes, results and assessment scores are recorded back into Medtech. Chronological, cognitive specific notes and results in CoDA enable easy identification of progress with assessment and enable viewing of change over time, i.e. cognitive deterioration at a glance. Testing and Trials WPHO developed the tool with funding from HWNZ for IT and funding from WDHB and WPHO for the gerontology nurse specialist who led the development. The funding from HWNZ was intended to support the development of a tool that would be nationally applicable and locally adaptable. The tool has been beta tested in a large integrated family health centre in Auckland by WPHO. CoDA is currently being trialled in the WDHB Cognitive Impairment Pathway Pilot. Future Development Further funding is required to improve current functionality, fully develop the current features and improve the intuitiveness and ease of use. Further to this, extensive work is still required to complete the initial and

ongoing management components, and promote and disseminate nationally. Further development of the tool to support awareness and risk minimisation is needed. This would link with related assessments already integral to primary care practice such as Diabetes and cardiovascular programmes. CoDA development in this area is a good fit with the primary care focus on prevention, patient advocacy, population education, equipping for improved self-management, and early intervention. Extending the tool to provide information, education, and clinical decision support in the areas of living well with dementia, behaviours that challenge, and end of life would further enhance the tool’s utility. Plans are underway for progress in these areas of work and we would welcome discussing future potential with interested parties. Closing Comments Recognition and timely assessment/diagnosis of cognitive decline in the community setting is lagging behind other chronic diseases that predominantly affect older adults. Work to educate, support and equip general practice teams in this work is likely to see greatly improved outcomes for people living with dementia by providing improved working across care boundaries and integrated, seamless support for people living with dementia and their unpaid care network (which predominantly consists of spouses and family). Improved support and care in the community will reduce carer stress and burden and unscheduled hospital visits, improve wellbeing for the person with dementia and their families, and delay


placement in residential care settings by equipping and adequately supporting the community care network.

References Health Workforce New Zealand. (2012). Gerontology nurse specialist in primary care. Wellington, NZ: Health Workforce New Zealand. King, A., et al., (2011). Evaluation of a gerontology nurse specialist in primary care: care coordination and service integration for at-risk older people. North Shore Auckland , NZ: Waitemata Primary Health Organisation. Ministry of Health. (2013). New Zealand Framework for Dementia Care. Wellington, NZ : Ministry of Health.

Authors Rachael Calverley, Director of Nursing, Waitemata Primary Health Organisation. Lynelle Dagley, Gerontology Nurse Specialist, Waitemata Primary Health Organisation. Address correspondence to: [email protected]

Photo source p.19: Shadowbox


subprojeidentified the need for a joined up whole of

Cognitive impairment clinical pathway pilot Waitemata District Health Board 3. Karen Holland In November 2013 Waitemata District Health Board commenced a nine month Cognitive Impairment Clinical Pathway pilot. Twelve GPs and their Practice Nurses will trial the pathway with 60 patients and their carers, referring those diagnosed with Dementia to Alzheimers Auckland for education, support and co-ordination of the ‘living well with dementia intra-disciplinary care plan’. The Auckland University Department of Geriatric Medicine will evaluate whether the pathway provides the opportunity for the patient / carer / family / whanau to live well with cognitive impairment and dementia. During 2010/2011 Dementia was one of five health of older person subprojects commenced within Waitemata District Health Board (DHB). During the first two years the dementia subproject reviewed a number of approaches from around the world, and canvassed a wide range of local service providers, patients and carers. The subproject identified the need for a ‘joined up whole of system pathway’ that enables patients and

carers to live well at home with dementia for as long as possible.

Pathway Development Process From September 2012 the dementia project commenced its action phase. The Project convened during November 2012 a Waitemata DHB Health of Older Persons Clinical Reference Group to provide clinical advice to the Health Older People (HOP)


Governance Group, and to lead, oversee and monitor the clinical developments of the Health of Older People Projects. The initial task of the Clinical Reference Group was to develop Waitemata DHB Cognitive Impairment Clinical Pathway. The core membership of the Clinical Reference group is: Clinical Director Geriatric Medicine, Clinical Director Psychiatry of Older Adults, Clinical Director ProCare PHO, Clinical Director Waitemata PHO, Clinical Director Community Health Nursing , Nurse Practitioner – Geriatric Medicine Team Leader, Head of Department Allied Health – Inpatient & Community, and Project Manager Health of Older People Projects. Subject matter experts are invited to join Clinical Reference Group meetings as required. For development of the Waitemata DHB Cognitive Impairment Clinical Pathway the following were invited to participate in the monthly meetings of the Clinical Reference Group. The value was immense having around the same table key clinical decision makers from the relevant nongovernment organizations, community health services, primary care organizations, secondary and tertiary services. The co-opted participants to the Clinical Reference Group meetings for the dementia topic were: Alzheimers Auckland, Dementia Nurse Specialist, Memory Clinic Clinical Leader and staff, Gerontology Nurse Specialists, Neuropsychologist, Nurse Leaders from both PHOs, Occupational Therapist: Dementia specialty, Mental Health Services Older Adults Team Members, and University of Auckland Department of Geriatric Medicine Clinicians.

The Northern Region Alliance Health of Older People Clinical Lead, Programme Manager, and Dementia Workstream Co-ordinator; and the Dementia Clinical Leaders from the other three northern DHBs have been invited guests to the monthly Clinical Reference Group meetings. This kept these regional colleagues informed and enabled their input to development of Waitemata DHB Cognitive Impairment Clinical Pathway and the pilot thereof. The Waitemata DHB Clinical Reference Group was granted read only access to Canterbury DHB Cognitive Impairment Clinical Pathway, and acknowledges with thanks how this informed its own development, and likewise credits information from the Taranaki and Midlands Region pathway developments too. The Waitemata DHB Cognitive Impairment Clinical Pathway has been developed to 







Achieve earlier recognition in primary care of cognitive decline and earlier implementation of appropriate interventions Build primary care confidence, competence, and consistency of diagnosis and management of mild cognitive impairment and uncomplicated dementia Strengthen an intra-disciplinary approach to care planning and support for people with dementia and their carers Enable secondary care to focus on the complex and uncertain presentations of cognitive decline; and significant behavioural or psychological symptoms and/or depression.

Pilot Phase Waitemata DHB has two Primary Health Organisations (PHOs): ProCare Health and


Waitemata PHO. Both have identified six GPs and their Practice Nurses who have volunteered to participate in the Waitemata DHB Cognitive Impairment Clinical Pathway Pilot. Each GP and Practice Nurse team will case-find from their 65+yr old population (55+ yr for Maori and Pacific) three patients with previously undiagnosed dementia and two with previously undiagnosed mild cognitive impairment. Auckland University have developed a patient information sheet and consent form for GPs to engage the required patients and their carers in this pilot study. The pilot ends on 31 July 2014, the date by which the University will provide to Waitemata DHB an interim findings report with the final evaluation report due by 31 December 2014. Waitemata DHB Clinical Director Geriatric Medicine and the Memory Clinic Geriatrician led a team of DHB clinicians to provide two pre-pilot training evenings with the 12 GPs and their Practice Nurses. Across the nine month timeframe of the Pilot this secondary care team are leading an Action Research Meeting every six – eight weeks with the pilot GPs, Practice Nurses and their PHOs, and Alzheimers Auckland to identify ‘what’s working / what’s not / what needs to change.’ It is expected these Action Research Meetings will result in incremental changes to the Cognitive Impairment Clinical Pathway. The expectation being that by the end of the nine month pilot the Pathway should be in a state of readiness to be rolled out to the 300 GPs across Waitemata DHB if the evaluation proves the pathway pilot has achieved the following aims. The evaluation aims to answer:

 





  

Is this pathway acceptable to GPs and their practice staff? Can use of this pathway improve GP’s and their practice staff’s confidence, competence and consistency of care for people with cognitive impairment and dementia? Can use of this pathway improve the quality of life for the patient with Cognitive Impairment? Can use of this pathway improve the quality of life for the patient with Dementia? Can use of this pathway improve the quality of life for care-givers? What is the impact of this pathway on secondary and tertiary care services? Is the resource utilisation for this pathway sustainable?

Information Technology Enabler During 2011/2012 Waitemata PHO negotiated a separate contract with Health Workforce NZ (HWNZ) to develop a Dementia IT Decision Support Tool. From its inception in November 2012 Waitemata DHB Health of Older People Clinical Reference Group offered clinical decision making advice to the Waitemata PHO Dementia IT Decision Support Tool. By October 2013 Waitemata PHO had ‘System Tested’ their Dementia IT Decision Support Tool (named CoDA) with one of their general practices. The Waitemata DHB Cognitive Impairment Clinical Pathway Pilot is undertaking ‘User Acceptance Testing’ of CoDA, it is loaded on the Practice Management System of each of the 12 GPs piloting the pathway. On a broader scale the four northern DHBs (Northland, Waitemata, Auckland, and


Summary The purpose of the Waitemata DHB Cognitive Impairment Clinical Pathway Pilot from 4 November 2013 – 31 July 2014 is to test whether it does provide the opportunity for the patient/ carer/ family/ whanau to live well with cognitive impairment and dementia and whether it is long term sustainable to be rolled out to the 300 GPs across Waitemata DHB.

Counties Manukau) in consultation with the National IT Board have purchased development of a Northern Region Clinical Pathways Naviagtor, an IT Decision Support Enabler for all Clinical Pathways. The Northern Region Clinical Pathways Naviagtor will be embedded in the Patient Management Systems of the four DHBs and of GPs to provide decision support functionality for clinical pathways and interface with both eReferrals & eShared Care. It will require a Regional Cognitive Impairment Clinical Pathway.

The six – eight weekly ‘Action Research’ meetings between the secondary care health of older people service clinical leaders and the pilot GPs, Practice Nurses and their PHOs, and Alzheimers Auckland will result in incremental changes to the Cognitive Impairment Clinical Pathway. The expectation being that by the end of the nine month pilot the Pathway should be in a state of readiness to be rolled out to the 300 GPs across Waitemata DHB. The diagram below provides a summary overview of the pathway as it was at the commencement of the pilot on 4 November 2013.

Future implementation of the Northern Region Clinical Pathways Naviagtor will require determination of the fit of the Waitemata PHO developed CoDA IT Dementia Decision Support Tool. Development and pilot of the Waitemata DHB Cognitive Impairment Clinical Pathway will contribute toward development of a Northern Region Cognitive Impairment Clinical Pathway.

Summarised – Waitemata DHB Cognitive Impairment Clinical Pathway Primary Care Workup

Symptoms

Treat or further investigate other potential causes of symptoms

Inconclusive Results

If after 12 months diagnosis is uncertain refer to Secondary Care

Diagnostic Discussion

No Cognitive Impairment

Mild Cognitive Impairment

Lifestyle Advice

Waitemata DHB acknowledges with thanks information from Canterbury, Taranaki and Midlands Region Dementia/Cognitive Impairment Pathways.

Non Complex Dementia.manage in Primary Care

Living Well With Dementia Intra-disciplinary care plan

Refer to Secondary Care: if uncertain diagnosis, complex Dementia, significant BPSD, disproportionate carer stress, inadequate home 9 support


The University of Auckland, Department of Geriatric Medicine’s evaluation of the Waitemata DHB Cognitive Impairment Clinical Pathway combined with the Pilot Action Research findings will inform Waitemata DHB Executive Management and Board in their decision about the way forward.

Author Karen Holland, Project Manager Health of Older People Projects, Waitemata District Health Board. Address correspondence to [email protected]

Photo source P. 23: Nottingham Post (Residents and staff from Alexandra Nursing Home, Long Eaton, raise money for people living with dementia with a memory Walk).



Driving Assessment and Beyond An observational study Emme Chacko A proportion of older people with mild dementia are safe to drive. However, driving cessation is recommended at some point as the disease progresses. To explore the psychosocial and adjustment issues following driving cessation, people with dementia and their supporters were interviewed within one month of driving cessation advice, and again six months later. The preliminary findings from seven dyads highlight the need for a more comprehensive process for driving cessation in those with dementia. It is recognized that driving is important in maintaining independence, freedom and mobility of older people. Driving cessation can limit access to family, friends and services. Findings from focus groups conducted with people with dementia and carers show that key issues that affect the process of driving cessation are lack of insight, loss of identity, and timing of cessation (Antsey, Jowey, & Windor, 2006). Older people do not seem

to plan for driving cessation, even in the face of a perceived likelihood of having future medical illnesses that could impair their mobility (Kostyniuk & Shope, 2003). The decision to stop driving in people with dementia is usually unplanned and abrupt, and made in response to a physician recommendation (Alder & Kuskowski, 2003).


There is a paucity of research on the issue of driving and dementia in New Zealand (NZ). Existing literature from overseas is largely cross sectional qualitative data from focus groups (Perkinson, Berg-Weger, & Carr, 2005; Antsey et al., 2006). This study was designed to try to replicate these findings in a local context and due to its longitudinal design, to add new qualitative and quantitative information to the existing literature.

Method This was a longitudinal observational prospective study with both quantitative and qualitative aspects. Participants and their supporters were interviewed on two occasions: within one month of driving cessation advice, and at six months. We aimed to recruit 20 participants and supporters. Participants were recruited from the Auckland City Memory Service at the Auckland District Health Board in Auckland, New Zealand. Inclusion criteria for the study were diagnosis of dementia, current driving status at the time of initial assessment, and driving cessation recommendation following assessment. Informed consent was necessary for participation in the study. A supporter was defined as a family member or friend who provided emotional or practical support at least once a week for the person with dementia. Patients who could not identify a supporter were excluded from the study.

Data collection Demographic data collected included age, sex, ethnicity, occupation, driving history, medications, relevant medical comorbidity and dementia subtype diagnosis. Standardised measurements were completed as part of routine clinical assessment at the Memory Service at one and six month points of the study. These included the Dementia Quality of Life self-rating scale (DEMQoL), Instrumental Activities of Daily Living Scale (IADL), and the Zarit Burden Interview- short form. Routine cognitive testing scores such as the Addenbrooke’s Cognitive ExaminationRevised (ACE-R), Mini Mental State Exam (MMSE) and Trail Making Test, Parts A and B were also collected. The quantitative results of this study, apart from entry MMSE, are not reported here. Semi structured interviews were then carried out by the principal investigator (with the participants and supporters separately) at both one and six months. The interviews were designed with the assistance of an academic social worker at The University of Auckland. Questions were kept broad and open ended to begin with. The participants and supporters were asked to describe their experience of driving cessation. The principal investigator explored issues as they emerged in each interview. All interviews were audiorecorded and transcribed. Qualitative methodology informed by grounded theory was used to thematically analyse and expand questions. Ethics approval Ethics approval was obtained from the Northern X and Y Regional Ethics Committee in New Zealand. Approval was also gained


from the local District Health Board Research Office.

Results Preliminary results are collated based on seven participants and their supporters being interviewed and followed up between December 2010 and March 2012. This resulted in a total of 22 transcripts for analysis. Four participants and their supporters were followed up at the six month point. One supporter declined follow up, and two participants were unable to be contacted (lost to follow up). There were three men and four women. The mean age of participants was 78 years (range 69-90, standard deviation 8.08). All but one of the participants were retired. Previous occupations included teaching, nursing, and counselling. Two of the men were previously working in driving related occupations (one being in the motor parts business and another a driving instructor). The only actively employed participant was a male property developer (although his level of functioning at work was declining). Nearly all were NZ European with the only other ethnicity recorded being Malaysian. The mean MMSE score on entry was 26 (range 23-28, standard deviation 2.03). Dementia subtypes, when recorded in memory clinic notes, were mostly of Alzheimer’s disease (three out of seven). There was one with Lewy body dementia, one with vascular dementia and one case of mixed Alzheimer’s and vascular pathology. One case was recorded as likely dementia with prominent executive dysfunction. Four of the supporters were spouses or longterm partners. Two were children. One was a

sibling. Wherever there was a living spouse, then that person was the support person. All supporters held current driving licences and were active drivers. All but one supporter lived with the participant. Qualitative aspects: 1. Memory loss Memory loss was evident in the participant interviews with five out of seven participants having no spontaneous recollection of driving cessation advice. Most of them also seemed unaware of their diagnosis of dementia. At follow up, two participants continued to have no recollection of these issues. The two participants who were aware of driving cessation had less confident diagnoses of dementia. Two supporters revealed that the participants had driven despite medical advice, prior to interviews. One of these required the New Zealand Transport Agency (NZTA) to be notified resulting in a formal revocation of driving license. But there continued to be some residual concern that this individual would still drive unless they physically removed the car. This individual was also perseverating on needing to have his test repeated frequently, and was clearly confused about the whole issue. His supporter stated: “He is still under the impression he has to go for a test every three weeks. I don’t know where that came from. I think it was to do with the medical, originally he didn’t pass because of his ears and he had to come back in three weeks to have his ears tested. And he keeps thinking I still have all the papers and everything and licence, but I haven’t. ”


2. The medical decision to cease driving The medical assessment of driving safety was an interesting theme. One participant was aggrieved by the use of the memory clinic assessment as the setting for this decision. In those participants who could be cued to recall aspects of the driving cessation advice, most disagreed with the decision. Some participants seemed to need evidence of driving difficulties to feel the decision was justified. The understanding of the rationale behind the decision seemed poor with issues such as “age” and “vision” being reported as sole reasons. There did seem a general consensus, however, about respecting the decision because a doctor made it. There was a general theme of acceptance despite unhappiness with the decision. In contrast, most of the supporters were fully accepting, and even pleased with the decision. They acknowledged the benefits of the memory clinic assessment as the setting. One supporter was aware of the legalities around having a dementia diagnosis and driving. Another acknowledged the importance of safety not just to themselves but the public as well. The level of understanding was higher. And again, there was a general level of respect for the medical profession. The role of the medical doctor in the giving of cessation advice and whether this was done “officially” enough was a related emergent theme. One participant who did not agree with the rationale behind it clearly stated that the decision was not official.

The supporters overall seemed to think that the doctor’s decision being verbally stated was official enough for them, but not for the individuals with dementia. One supporter assumed the doctor would inform the NZTA as routine. When explained that this was not routine practice, she responded: “Well, that’s b***s*** as far as my mother is concerned, and I don’t even think it’s dementia, she would just say yeah that’s fine and then you know, you would find that she is driving again.” One supporter wondered if his sister could still legally drive given that she still possessed her licence. Another supporter reported going back to the doctor requesting “if he could make it more official” due to concerns that her husband would continue to drive. This resulted in the NZTA being notified and visiting her husband to formally revoke his licence. 3. Occupational therapist (OT) driving test Two participants had experienced the specialist OT driving test and regarded it positively. The test result, when leading to restriction rather than to cease driving, was viewed as a gentler path to ultimately cease driving rather than an abrupt decision. The one participant who experienced this commented: “On a psychological point, it gave one the feeling that it wasn’t quite hopeless after all and that there was a light at the end of the tunnel.”


4. Awareness of issues with driving, and the relationship to dementia The two participants who believed they had stopped driving of their own accord cited reasons of family pressure and the experience of having an accident. When the interview was expanded to explore this issue further, four of the five remaining participants failed to acknowledge any concerns about their driving. Two participants could not identify any potential effects of dementia on driving. The rest were able to acknowledge the effects of ageing and dementia but seemed to think that the dementia would need to be severe, and that therefore this issue would not be applicable to their situation. As per the driving histories recorded by memory clinic assessments, most supporters were aware of problems with their participant’s driving. One of the supporters who was a health professional stated that she was surprised that her mother would get lost in a familiar environment and that overlearned behaviours did not survive dementia. One supporter commented on the difficulties in predicting driving risk: “But it was very difficult… I did continue to have the belief that she wasn’t that likely to kill someone… that it was more likely to be panel damage… and I don’t know if that was wrong actually. In fact… an older person over the Shore who drove into someone’s house and killed someone. And I looked at that and thought ‘Oh God’ you know.”

5. The meaning of driving and emotional effects of driving cessation on participants Driving was an important part of the lives of participants overall. Two of them had reduced the extent of this prior to cessation advice. Driving facilitated work and leisure pursuits, as well as sociability. And this was corroborated in supporter interviews. The emotional effects of driving cessation, however, varied a lot among participants. A common initial response was one of apathy. Interestingly, when a related question about ‘feelings’ rather than ‘effects’ was asked, those that initially seemed apathetic expressed stronger emotions. The loss of independence was a prominent theme. One supporter described this as “humiliating” and “embarrassing” for the participant. One participant avoided asking for help with transport to minimize this issue. There were multiple references to the theme of ageing. Two participants had comments that included thoughts of death as a result of restrictions in freedom associated with driving cessation. One of these was processed in a positive way. “People are so important to me. If I can’t keep in contact with the people with whom I expect to keep in contact with, then life is not worth living.” “It all of a sudden made one feel that hey, the end of the road is not too far away. It brought home the fact that I am not going to be around on this earth for ever, and in the meantime, anything that is going to help one take part in it will be of benefit to oneself.”


6. Perception of effect on supporter by the person with dementia Most participants did not accurately estimate the impact of their driving burden on their supporters. Six of the seven participants minimised the impact of their driving cessation on their supporters. Two participants were unaware of what the impact might be but assumed it wouldn’t be much. One acknowledged there may be a “possible” impact but couldn’t elaborate. In two of these dyads, this view was corroborated by the supporters who were both male (brother and husband) and they agreed that they didn’t mind the change. In the other supporters, who were all female, this view was not corroborated and the extent of the emotional impact on them is documented below. One participant who had minimised impact during his interview, later acknowledged more after listening to the carer interview. Only one participant expressed gratitude to their supporter during the interview. 7. Emotional effects on supporters Most supporters experienced a significant emotional impact as a consequence of the participant stopping driving. Resentment and frustration were common themes. The key issue overall was the intrusion into the personal space of the supporter due to the increased time at home with the participant. It was particularly poignant when the supporter was an able bodied spouse whose normal ageing was clearly out of synchrony with their affected partner. Only female supporters living with the participants were affected. And the changes, sometimes subtle, in the participant that made their

increased time together more difficult were noted by the following female supporters. “ I don’t seem to have any time to myself. is here a lot and I don’t seem to get a lot of space… There is no escaping. Personal space is important… It’s like punishment in a way.” One supporter seemed to be biding time till her partner could qualify for rest home level care. She was finding leaving him alone on evenings or weekends away increasingly problematic due to his inability to care for himself. She stated: “On my weekends off… if I go anywhere, just comes with me and sits in the car for hours while I’m in my appointments just to get out of the house. If he sits in the car I don’t leave the keys there. If it starts to rain, the automatic windows are down, if he goes for a walk, the car is not locked. That is a problem.” One supporter attributed the increase in stress largely to a reduction in sensitivity and empathy by the participant. One supporter noted a positive effect of driving cessation was being more comfortable inviting her mother over to her home, knowing that she was not driving in a risky manner. 8. Practical considerations On further closed ended questioning, the effects of social restriction were acknowledged by several and responses such as “annoying” and “really impinges on things” were noted. The only employed participant had to reduce his work, and re-organize appointments in order to cope.


The impact for some was reduced by the paralleled decline in socialising and activity. All participants acknowledged that they used transport assistance from family, and some of these included a number of family members. Three participants identified other people such as friends and neighbours who were of help. One participant did not think he needed the help of anyone outside of his family, which was consistent with his lack of insight into the emotional effects on his wife. One participant seemed to readily approach strangers which was an issue of concern to her supporter. The issue of using taxis was a vexatious one. There seemed to be generational differences in the views regarding this. The diagnosis of dementia allows access to half price taxis in NZ, but this did not sufficiently address the concerns around their cost for participants, regardless of whether they had the means to afford them. The use of public transport was specifically explored after the interview was expanded. Four out of seven participants had used public transport since driving cessation. Three of them reported good experiences. One supporter was concerned about the participant getting lost despite the participant reporting no difficulties. They identified advantages such as convenience if it was easy to access, cost (public transport during off peak hours is free to super annuitants in NZ with their “Supergold card”) and not having to find a car park. It also provided a source of activity in itself. One problem however was remembering that they were entitled to free transport and the

associated issue of having the Supergold card at hand. Two participants referred to costs involved and their supporters confirmed that they had paid in error, with one of them needing a replacement card to be ordered. One supporter commented on the types of people that used public transport as “hard cases” and felt that buses were “dirty”. Two participants seemed to enjoy walking. But at least for one, the issue of getting lost and potentially placing oneself at risk was evident.

Discussion The main finding of this study is that people with dementia and those who support them struggle with the issue of driving cessation in varied ways. The inner world of people with dementia is unique to the individual, and to appreciate their understanding of the driving cessation process requires clinicians to listen carefully to each individual. There seems to be a case for greater involvement by the NZTA in the driving cessation process. Participants and supporters, in general, seemed to feel there were deficiencies in how legal the decision ultimately seemed to the participant. Participants seemed to have difficulty in understanding the medical decision. This seemed to be primarily a product of the impaired insight and judgement associated with dementia. The benefits of more routine involvement of the NZTA may be to increase the acceptability of driving cessation in those with poor insight. The involvement of the NZTA was certainly welcomed by some supporters. A further benefit to carers is that they could refer to a legal status rather than just remind or argue with the affected person.


Others have also noted that the responsibility for drivers with dementia has perhaps unfairly fallen onto the healthcare system which is poorly resourced for this issue (Hopkins, Kilik, & Day, 2004). The detrimental effect on the doctor-patient relationship, as observed in this study, has also been previously noted (Hopkins et al., 2004). A related issue is whether funding of specialist OT driving assessments is worthwhile. Views about the assessment, when completed, were positive apart from its cost. The assessment seemed to add to the acceptability of driving cessation, with possibly some merit to a period of driving restriction prior to full cessation for those who can safely do this. The discrepancy between the perceived burden of care by participants and carers suggests that efforts need to be targeted at assisting carers post driving cessation advice. Recommendations:  The possible mandatory involvement of a regulatory body such as the NZTA or the police, by mechanisms such as official notice in writing, removal/voluntary submission of licence in person should be explored further  The OT driving assessment could be funded by the NZ government to improve the acceptability of the driving cessation decision  Increase supports for stressed carers post driving cessation advice  Psychological input at the time of driving cessation should be explored further

Conclusion Driving cessation affects people with dementia in varied ways. Most participants were unhappy with the decision. Most supporters, even though agreeable, were also unclear about the legalities of it. Carer burden was evident as the study progressed and seemed particularly related to increased time spent with a person with dementia with progressive interpersonal deficits. Future considerations are improving the process of driving cessation, and potential closer links with regulatory bodies.

References Perkinson, M., Berg-Weger, M., & Carr, D. (2005). Driving and dementia of the Alzheimer type: beliefs and cessation strategies among stakeholders. The Gerontologist, 45, 676–685. Anstey, K., Jowsey, T., & Windsor, T. (2006). Issues and Experiences in Driving and Dementia Report Summary. Canberra, Australia: Ageing Research Unit Centre for Mental Health Research Australian National University. Kostyniuk, L ., & Shope, J. (2003). Driving and alternatives: older drivers in Michigan. Journal of Safety Research, 34, 407–14. Adler, G., & Kuskowski, M. (2003). Driving cessation in older men with dementia. Alzheimer Disease and Associated Disorders, 17(2), 68–71. Hopkins, R., Kilik, L., & Day, D. (2004). Driving and dementia in Ontario: a quantitative assessment of the problem. Canadian Journal of Psychiatry, 49, 434–8.


Author Dr Emme Chacko, Psychogeriatrician, Auckland DHB

Acknowledgements I thank Dr Gary Cheung for his supervision and Dr Carole Adamson for her assistance in the qualitative aspects. I also thank the Auckland District Health Board Memory Clinic staff for their participation. Finally, I would like to acknowledge Alzheimer’s NZ for their funding.

Photo source P. 29: allaboutagingllc.com



From the black hole to new frontiers The challenges of young onset Alzheimer’s Eileen Smith No light can escape from a black hole. It disappears from the visible universe – becomes invisible. Just like the under-65s when they are diagnosed with ‘young onset Alzheimer’s disease’. They do not fit the commonly understood model of dementia, which is that it affects older people. In 2001, at the age of 54, Ray Smith was diagnosed with young onset Alzheimer’s. Neither he nor his wife Eileen had any knowledge or experience of the disease. Twelve years later, Eileen takes a look at what would have helped and how we need to be patient centric in our services. Not that many years ago, my idea of someone with Alzheimers was a picture of a very confused and very old lady wandering in the night and getting lost. How wrong I was. In January 2001 I received a huge reality check, when my husband was diagnosed with Alzheimers Disease. We met as 17 year olds, married at 20 and now had this to face, well before we were anywhere near retiring. Ray was 54. He was my best friend, my husband, father of our two children and my rock. But, for the first time in 37 years, Ray forgot my birthday – this was the catalyst that sent him to the doctor.His own doctor dismissed the problems with “you’re just getting older”. I persuaded Ray to go for a second opinion. This time I was told

that as soon as Ray started talking, the doctor knew something was wrong. A visit to a neurologist, blood tests, scans and an MMSE followed and a prescription for a drug to slow down progression – one that cost over $300 a month, a parting comment from the neurologist “I can’t do anything more for you, good bye and good luck.” At home we searched the Internet for information & quickly realised that there was no cure. This was a terminal diagnosis. Ray had been an export manager for the previous 25 years, spending half the year away and finding his way around some 27+ countries during that time.


Ray and granddaughter, 2002 Ray started on the medication – it had awful side effects but during that first year he was still able to continue working at the job he loved.

Family make excuses, he’s too young, get a second opinion, dad’s just not concentrating or oh I’m always losing my keys it’s not that bad.

Work gave him some semblance of normality and continuity whilst we changed our future planning time frame from 10 years ahead to 6 months.

Well actually – yes it is that bad.

Joining the Alzheimers Association meant lots of education and support for me, but there was no support available for Ray. It was as though along with a D for dementia came a D for dunce – his input was not needed nor was he asked. There is also a huge stigma associated with dementia – friends don’t want to know, they don’t know how to talk to someone diagnosed with Alzheimers disease, so they just stop visiting.

These comments are driven by lack of awareness and understanding, especially relating to the young onset group. Plus it is very hard for someone who has been diagnosed to stand up and say I have dementia, oh and by the way, it is Alzheimers disease. In Dec 2001 he resigned from his job – the stress of driving over the Auckland Harbour Bridge, in heavy traffic every day, plus the fact that he could no longer deal with any new work made the decision reasonably easy. That was when it hit me that there was absolutely no support in place for Ray, once


he was home. What would he do whilst I was still working – after all, we still had a mortgage and bills to pay. The Health system was divided into 2 groups, the under-65 and the over-65.The under-65 group did not have Alzheimers as a disease that affected that age group. The over-65s accepted the diagnosis, but not anyone under 65. We were stuck in a Black Hole. No light can escape from a black hole. It has, in effect, disappeared from the visible universe – has become invisible. Just like the under-65s when they are diagnosed with ‘young onset Alzheimer’s disease’. They do not fit the commonly understood model of dementia, which is that it affects only older people That original picture I had in my mind, that Alzheimers was for the very elderly, was in fact reality. So we started lobbying – for “a buddy system” so that Ray could still do (as he said) normal stuff. We talked to local papers at every opportunity, saw DHB staff, and wrote countless letters. I felt very strongly that continuing social interaction was crucial to maintain his cognitive levels and prevent him falling into depression. A quote from AlzheimersReadingRoom.com A lack of social stimulation is harmful for people living with dementia. It exaggerates the impact of the condition, can lead to depression and it encourages the person to withdraw into themselves.

I managed to get him to join a community based walking group, he loved it and a taxi would pick him up, take him to the group, they would walk for an hour or so, then have a coffee. Another quote from AlzheimersReadingRoom.com Persons living with dementia are often capable of more than we can imagine. So let’s guide them. He joined an internet based chat group – the first of its kind and a huge support for him. People from all over the world became friends. He even got a job delivering circulars; he was able to chat to some of the neighbours around the area at the same time and most of all it gave him a sense of still being able to contribute to the household. I took some golf lessons so that Ray could continue to play – I spent more time picking up forgotten clubs and finding wayward balls than concentrating on my own game. Golf is a very competitive game and if you can’t keep score properly, the less understanding partners get irritated. Deterioration was inevitable over the years. At this point, Ray actually recognised that the drugs were not working and he made a decision to stop them and use the money to do things we enjoyed. So weekends away and theatre visits took their place. Our dinnertime conversation was dwindling and any talk of what had happened at work that day from me, was met with a blank stare. How could I get Ray involved again?


At this point the changes were slow & subtle. Most people think of Alzheimers as just memory loss – it is so much more that that. The disease affects everything you do – I found Ray in tears one morning as he was unable to work out how to get a teaspoon of sugar into his coffee cup or which way round to hold the phone. He said he would clean the car – I found him washing the garage floor. I reduced my working hours so that he wasn’t on his own all day and getting depressed. If he went out, he left the front door not only unlocked, but wide open. He forgot which way to look if he crossed the road. His speech became worse and I couldn’t grasp what he was trying to say as quickly as I used to do. Once, only a couple of words were missing from a sentence. Now he had only the bare minimum of words and not enough for me to understand his meaning. With this lack of communication came increasing frustration and anger. As someone who had worked in sales all his life, words were king – wouldn’t you get frustrated and angry, in that situation, about what your body was doing to you? I refused to put him into a rest home so that I could have a break – a rest home with people in their 90s was no place for my still physically fit young husband. The term Day Care is abhorrent to me too, people with dementia are still insightful and just imagine how would you feel if you were told you had to go to day care – isn’t that for children, not adult, well-educated people who have led interesting lives.

Early onset Alzheimers is an aggressive disease. I know people of a similar age to Ray with young children at home, who couldn’t afford the medication. Their entry into permanent care was swift. So – it was a case of - if you can pay for the drug, that’s good – if not, too bad. We know that the current medication is not a cure, but it does enable people to plan their future, make decisions for their care and still have some quality of life and defer what we know is inevitable – entry into permanent care – even if that deferral is only 2 years, that could be a huge saving for the health system. In 2006, the progression of the disease became obvious, Ray started to lose his balance and his sleep disturbances were frequent. Waking up to realise that he had no idea where he was or, once, who I was, meant I was exhausted. In May 2006 and just 2 days after his 60th birthday, Ray was admitted to a specialist dementia hospital. Now, he is unable to feed himself, to speak or to walk unaided. We are lucky that the hospital has marvellous staff that treat him as family. So what would have helped, where do we need to go in the future? The Health Board contracts are allocated for support of carers. But how about we look at supporting the patient? Increasing support for the patient will lessen carer stress. Carer support in its present form is costly, ineffective and inadequate.


A couple of hours twice a week often increases stress for the carer rather than relieving it.

Facebook who frequently lobby their respective governments.

People living with dementia need somewhere that they can feel valued, be able to contribute, feel successful, be challenged, and have a laugh.

An increased knowledge and awareness of dementia will make our employers and cities more dementia friendly and there will be a wider choice available. What about an awareness campaign aimed at employers?

People living with dementia are often capable of so much more – so let’s guide them, not put them in a room and forget about them.

What is needed first is for those in control of our health dollar to start thinking outside the square and start making that change now!

Let’s ask and find out what they need and what works for them and their carer.

Resources

Channel money from the current programmes into age appropriate centres, where they can socialise and have a sense of achievement. Maybe it is dementia specific, but then again, maybe for early diagnosis it can be within established community groups. But if we go into an already established community setting, let’s train our volunteer workforce – volunteers who lack specific dementia knowledge can cause many issues. So let’s ensure our valuable volunteers are trained and made dementia aware too. So often they are at the forefront of community groups. Sometimes these issues are blamed on the person with dementia, but maybe, with better training, the volunteer could step in and calm or distract before things get out of hand. Memory cafes, Facebook groups, even gym memberships – these can all provide ways to challenge the body and brain and give that valid interaction with others in a similar situation. People living with this disease are becoming strong and vocal advocates for change and there are a number of groups on

www.dasninternational.org An internet based global organisation for people with dementia www.alzheimers.org.nz New Zealand website with links to local organisations www.alz.co.uk/icaniwill A library of ideas to help carers and people living with this disease www.youngonsetalzheimers.com Eileen’s own website with extracts from her book and articles. If you use Facebook, do a search on Dementia and you will find many groups there who can help in practical ways – people who are walking this journey and happy to provide advice and guidance

Author Eileen Smith, Carer and author, Auckland

Photo source P. 40: Photo courtesy of author Eileen Smith



Peter and Me When a Love Story becomes a carer’s anguish Helene Ritchie Helene Ritchie reflects on her book which focuses on delivering person-centred dementia care: the personal, the clinical, and the political A society, a government is best judged by how it looks after its weakest and most vulnerable citizens. The issues of aged, resthome, and dementia care and who cares for the carer, are complex. My book, Peter and Me When a Love Story becomes a carer’s anguish, is based on my records as the 24/7 carer of Peter my partner, with early onset dementia, (a young, not older person, but “forced” into an aged care “system”); on my professional experience as a registered psychologist; and on my political experience as a long time political activist in governance, elected to Wellington City Council, and a

Health Board. It was written with change constantly in mind. I wanted to honour Peter; want to share our story - the story of many others; and to give voice to isolated and exploited carers, especially those partners and others, in private, family homes. The sharing of our story-and what we did, helps others in similar circumstance. For example, it recounts resthome experience and anticipates for others what can happen and what by implication should and should not happen; it pioneers the introduction (and challenges) of individual funding, when none existed then; it produces a prototype individualized plan and guidelines for finding


and focusing on the potential and the strengths of the “cared-for”.

of our most vulnerable, and our chronically ill at home.

Primarily, it is a story and a story with a message(s).

Adhoc tweaking, “adhocery”, periodic throwing money at a part of the “system” will not achieve that.

It should be recommended reading for all health, local government, social work training. It is well nigh impossible for a young person, training, say, to be a doctor, psychiatrist, nurse, social worker, community worker to understand the situation family carers find themselves in. It is difficult to have insight into the situation ofpersons caring 24/7 for someone with dementia. This book should aid that understanding, and should, I hope, engender valuable discussion, questioning and a quest for change. It exposes fundamental issues about humanity and failed systems in our country and especially, but not only, in our health system. The issues are wide-systemic and political, economic, human rights, and clinical. It is the “system” that is at fault-and hardly ever the individuals who work within itwhether they be doctors, nurses, resthome carers, or the most exploited, by our society, carers in private homes-spouses, sons and daughters. All who work within the system, are bound by a fragmented, underfunded, adhoc and in so many ways, inappropriate system. As a result, I am calling for a Royal Commission inquiry, and a “bi-partisan” Parliamentary response to produce viable solutions. Nothing less will produce the desired quality outcome-a comprehensive and viable and innovative system for the care

The endless repetitive reviews, and recommendations without or with minimal and adhoc action, are done at our future peril as a society. Some of the issues have been repeatedly investigated by Parliament Select Committees, Human Rights Commission, individual Parliamentarians, in the Courts, by review panel(s); by the Ministries of Health; Social Welfare and others; with scant result, cohesion, and insufficient “clout”. There are so many stories of poor care-but with no national forum to air them and the issues. Innovative and acceptable ways of allocating future costs, access, standards and support have to replace a “head-in-the sand” exploitative approach by imagining better and doing better. The issues are not new, but have come to the fore now more so, because of the focus by and of demographic change and the so-called “baby boomer” bulge, and demandhighlighted by the 2006 census data of 420,000 carers in New Zealand, and the expected increase of people with dementia from 48,182 in 2011 to nearly 150,000 in 2050. The key person, to an adequate system of “ageing in place” (at home as is current government policy), is the carer…and will become more so in private homes, because there are not and there will never be sufficient appropriate places available in resthomes in future, nor sufficient funding to


meet the demands not of the “patients” or the carers but of the businesses that most resthomes have become. The prognosis is poor future care; and of increasingly complex illnesses of the older person-including greater numbers of those with a dementia. But this is not simply an issue of or for the older person-it is an issue(s) which relates to the young person with dementia (early onset dementia); to the family carers of lifelong children and adults who are cared for at home, to the carers of people at home with chronic and degenerative illnesses-especially but not only neurological illness and brain damage. It is also about those who are at once, both patient and carer and who live alone, with minimal advocate. When I completed my book, I was asked to make recommendations-two or three perhaps. I could have, but I decided that the issues, multiple and complex- predominantly societal, political and systemic, impacting on the clinical and the professional, and on fundamental human rights, are too many for one person to resolve. They demand the examination, creativity, intelligence and innovation of a nation. They relate to such issues as rights for those locked into secure units; chemical and physical restraint-cruelty; to exploitation of carers; to a system of siloed government departments and central local government; to monitoring, audit and standards; complaints processes; to the need for significant carer (at home) support and funding-way beyond what is currently available; to effective assessment processes to focus on strengths, meet needs and opportunities. And they relate to political budgets, Parliamentary and political parties’ priorities, and funding.

A national discourse on the complex issues around dementia that dementia carers and carers in the (private homes) and resthomes are facing is urgent. A Royal Commission would hear the stories (and concerns) in one national forum, would investigate quality systemic and practice innovations here and overseas, would identify the key issues, and recommend legislative, regulatory and systemic change and innovation, for humane, societal and economic and financial reason. It would focus on carer support and “aged care”, but also with a specific focus on dementia, early onset dementia, on family carers of children to adults with significant disability and on carers with 24/7 degenerative, and neurological illness. “Our lives begin to end the day we become silent about things that matter.” Martin Luther King

Author Helene Ritchie is a registered psychologist, District Health Board member and Wellington City Councillor, former 24/7 carer and author. Peter and Me When a love story becomes a carer’s anguish (2013). Oxford, NZ: Fraser Books. Available in bookshops or direct: [email protected]

Photo source P.45: Photo courtesy of author Helene Ritchie



Walking in another’s shoes in home-based care Susan Gee and Tracey Hawkes As we support ageing in place, the role of carers providing home-based support is increasingly vital and complex. In 2012, a version of the Walking in Another’s Shoes personcentred care education programme targeted specifically to home-based workers was introduced in Canterbury. In this chapter we reflect on some of the tensions that can arise in providing person-centred care in home-based settings, and provide brief case studies of how the programme impacted on the students and their day-to-day interactions in the homes of people living with dementia. One of our home-based support worker students started the Walking in Another’s Shoes programme by describing her interactions with a client as ‘attention seeking’. Over the course of the programme we heard an attitude shift and she finished by saying:

She is in pain. She is anxious! I know I can make a difference to people who are feeling anxious. I now ask her each time I go in “what is the one thing I can do for you today that will make a difference.” She doesn’t repeat herself anymore because we actually listen. She is now able to do more for herself. I’m excited now. We have pushed for a CT of her pelvis, it’s fractured. She wasn’t attention seeking, it


wasn’t her dementia, she wasn’t just wasting my time. In this example we can see the shift that is at the heart of the Walking in Another’s Shoes programme –the shift towards more person centred care (Kitwood, 1997). Dawn Brooker (2004, 2010) sets out four cornerstones of person-centred care and reminds us that it is about treating people with dementia as ‘V.I.P.S.’: Person centred care is about V Valuing people living with dementia and those who care for them. A major impetus for the Walking in Another’s Shoes programme is the fundamental recognition that carers are important. I Treating people living with dementia as Individuals. Person-centred care takes an individualised approach to assessing and meeting their needs. Tom Kitwood has an apt quote: “When you've met one person with dementia . . . you've still only met one person with dementia”.

group experiential training with ongoing enabling in the workplace is more effective than traditional ‘chalk and talk’ training for dementia carers (Kuske et al., 2007; Mason & Adeshina, 2011) Kolb’s influential theory of experiential learning sets out a four-stage cycle of effective learning (Kolb, 1984. The aim of the Walking in Another’s Shoe’s programme is to encourage each step of this cycle). The programme provides students with a rich set of experiences, and encourages them to reflect on these experiences through discussion. Through this they develop some conclusions for their own practice that they can then use to plan and try out new approaches in their own workplace. This experimentation in itself provides an experience to reflect on. Figure 1: Four stages of effective learning

P Looking at the world from the Perspective of the person living with dementia. This can include seeing behaviours that challenge as attempts to fulfil or communicate unmet needs. S Creating a positive Social environment. This approach recognises the importance of relationships and interactions with other people, including carers. These interactions hold within them the potential to contribute to creating a positive social environment. Or to do the opposite. Changing attitudes requires a special learning environment. Research suggests that small

To structure this learning spiral, the Walking in Another’s Shoes programme runs for 8 months. There is a small closed group of approximately 20 students, and each month they gather together for a full day interactive workshop. The workshop integrates lectures


with a range of experiential activities and reflective discussion. This is supported by one-on-one visits to the students each month to help them go through the learning cycle again. They reflect on the latest workshop, draw out something that really resonated for them, and develop a plan for what new approaches they will try out over the coming month with a specific client. Part of the special environment is that both the classroom work and the one-on-one work take an appreciative inquiry approach. This is an approach that holds that at its best, change is a process of inquiry (a process of asking questions) that is based on affirmation (Whitney & Trosten-Bloom, 2010). The facilitators don’t come into the discussions as an expert to handout answers, but rather they ask lots of questions. In this way the students are learning to ask the questions in their own work that they need to inform a personcentred approach. The Walking in Another’s Shoes programme doesn’t provide a cook book. The programme nurtures reflective practitioners who can respond with a creative person-centred approach to each unique individual. Walking in Another’s Shoes was developed in the Canterbury District Health Board by Maria Scott. The programme started with carers and diversional therapists working in aged residential care facilities. It is now offered without fee through a number of DHBs. By the end of 2013 there was a WIAS educator in every DHB in the South Island, and already uptake from one DHB in the North Island. In Canterbury, for the first time, we are now offering a Walking in Another’s Shoes

Programme that is targeted specifically for home-based support workers. This seems a timely initiative given the importance of home-based care. In some cases residential care will be the best option for an older person with dementia, but often home-based care can be the key to keeping people at home where they want to be. This is at the heart of home-based support. From a financial perspective it is cost effective to provide this home based support to delay or avoid a person’s admission to residential care. The average annual subsidy for a person in aged residential care is about $37,000. The average annual cost to a DHB for home-based support services is about $3000 (Controller & Auditor-General, 2011). Home-based support is an important feature of our support landscape. Around half of people aged 85 or older are living at home with DHB provided home-based support. In 2009-10 the DHBs in New Zealand spent about $224 million dollars on home-based support services to provide an estimated 9.2 million hours of support for around 75,000 older people Controller & Auditor-General, 2011). Given that the use of home-based support services increases with age, and most users are over 75, the demand for services is projected to increase as our population ages Controller & Auditor-General, 2011). Furthermore, one of the consequences of people staying at home longer is that the acuity and complexity of the client group is increasing (Moloney, 2005).


The first group of home-based support workers graduated from their own programme in July. Outcome measures revealed a statistically significant shift in how hopeful and how person-centred their attitudes towards care were. There was also a significant shift in how positive they felt about their role. As we reflect on our experience with this first home-based support worker programme we are aware of some of the challenges or tensions of working in the home setting (Martin-Matthews & Sims-Gouls, 2008; Hale, Barrett & Gauld, 2010; Patmore, 2004). In this chapter we describe some of these tensions and provide some examples of how students are coming to work in a more person-centred way within them.

Care vs home Home-base support workers work in people’s own homes. Home is a place that’s private, where you get to choose who you invite in. Home is a place where you potter around performing the small tasks of daily living in your own space, in your own time, in your own daily rhythm (Barrett, Hale, & Gauld, 2012). As can be seen in some of the later chapters in these conference proceedings, even if you live in a residential care facility you can still feel like you are ‘at home’. Conversely, even though you live in your own house, you can still feel that you are sliding into institutionalised care right there in your own living room. Perhaps it’s no wonder people sometimes choose to shut the door. There can be a tension between a sense of home and home being a place of care. (Hale et al., 2010). It’s a complex negotiation.

Person-centred care is about supporting a person’s sense of self and control and arguably that also bestows a sense of home. My lady has a diagnosis of Alzheimer’s. When I first went to shower her she didn’t want a bar of me. I notice she had all her clothes in bundles on the bed. Her husband says she is driving him nuts as she spends her entire morning rifling through the laundry (clean and dry), scrunching things up and rolling her socks into ball, putting things in to goodness knows what drawers and cupboard. She’s constantly active but achieving nothing. I start attending the workshops. Now on reflection I realise that this lady has lost all of her roles, she has no control of anything, she no longer feels useful. I go back to my lady, she opens the door, she tells me “I don’t need your help”. I say “have you picked out your clothes for today?“. She looks at me, smiles, and takes me by the arm. Together we pick out her clothes. Now when I get there she has them all ready and we make a big fuss over the girly stuff, making sure things match, that she smells nice, her hair is done. Giving her the choice, recognising her identity, and having some control made all the difference. Their relationship is kinder now, she has mostly stopped saying how horrible he is and he at times now compliments her on how she looks. She no longer rifles though her drawers (who would have thought this would have made such a difference). I get hugs now not shown the door.

Assigned tasks and time versus individual needs Home-based support worker do not have contact with the same indivual across a whole


shift. They go in to do a particular set of tasks, and then they leave. There is often a tension between individual needs and a model of home-based support that is explicitly task orientated and time managed. Ideally, home-based care is about supporting independence and takes a restorative approach, but it can seem that it is simply a service to meet physical needs. Ideally, home based support is flexible to respond to unique and changing needs, but typically the carer has a list of tasks to carry out. Ideally, homebased support values the relational aspect of care, but talking with the older person is not typically on any care plan list (Barrett et al., 2012). The Walking in Another’s Shoes programme is helping carers think outside the box and see ways that they can focus on the relationship rather than the task, and encourage autonomy and choice. Our student Linda had been trying to work with Mrs B for about 3 weeks prior to starting the programme. Mrs B was described as being fully dependent and quite reluctant with her cares, her communication had deteriorated and she was very withdrawn. The week after the first workshop Linda went back to see Mrs B. She put on her Detective Hat and determined that Mrs B was actually communicating an unmet need, that is ‘to have the power to choose’, and that maybe she was experiencing a loss of independence and autonomy. So Linda offered Mrs B a choice of two shirts (do you want the white shirt today or the green one?). Mrs B reportedly looked at her a little puzzled. Linda again offered the choice of

shirts and Mrs B hesitantly chose one (just by using her eyes). The next visit Mrs B was offered another choice of tops, this time she actually made a choice verbally. She was then offered the choice of pants and again she made a choice. This had been worked on for about 6 weeks each time just extending the expectation, Mrs B now chooses all of her clothing, she relates her choices to the day’s weather, her verbal communication has increased to being able to express the more complex comparison of ‘no not that, it’s too hot today’ (and yes she’s been spot on). The biggest learning curve for Linda was that Mrs B was actually always able to make these choices and have these conversations but what she had lost was the opportunity to express these. But not now!

Isolation One of the differences that we are really struck by is that home-based support workers work on their own. They don’t get to check things out with the nurse on duty. They don’t get to see how other colleagues on their shift work with individuals, or talk over shared clients. They don’t get a hand-over discussion with each shift. That isolation creates a number of tensions. Isolated on the family front line Particularly in home-based care, carers are often working with the family. The carer can’t ‘pop down the corridor’ to get the colleague who gets on so much better with the ‘difficult’ daughter – it can feel like they’re alone on the frontline.


Part of the Walking in Another’s Shoes programme explores the ways carers can expand out their person-centred VIPS approach to the way they work with the family. My 93-year old client lives with his single daughter. She is very capable but is overprotective of her dad, super efficient but is creating a lot of unnecessary problems for us. She continually repeats what needs to be done for her dad. Then finally her inspection of his presentation. Then we go over it all again on the next visit, and the one after that and the one after that. I feel quite hostile being treated as if I know nothing and am incapable of following or listening to instructions. It’s “her way or no way”, irrespective of our training, experience and knowledge. After I attended the module on caring for the carers I became better equipped. I learnt how to do a quick relaxation, and then I didn’t exhibit my negative vibes because I was in a different ‘space’. Because I was relaxed I was able to realise that her Dad’s cares were the most important part of her daily routine. I accepted and listened to her concerns and proactively performed them according to her wishes. I would ask questions to reinforce I was listening. After a few visits with the use of my relaxation it’s changed, I don’t get the repeated instructions and there seems to be a mutual trust happening. I’ve got to the point thankfully where I enjoy my visits and everything just seems harmonious. Isolation versus reflective practice and supervision Home-based support workers are working on their own, and there is little opportunity for

day to day mentoring and supervision (Barrett et al., 2012) or to talk things over to encourage reflective discussion. For example, one of the outcome measures for the Walking programme is a manager’s rating of how person-centred the student’s behaviour is in the workplace. For the majority of homebased support workers it wasn’t clear who could fill the form in. Who got to see how person-centred the carers were with clients? The Walking in Another’s Shoes programme is an opportunity for peer support and mentoring. It provides structured opportunities to reflect on their own work practices and challenges and how to deal with them. The students often respond incredibly well to this opportunity, and we hugely respect their honesty, insight and willingness to try new approaches. Wendy’s story shows the fundamental underpinnings of that reflective practice – the students are learning to ask questions and look for a better way: I caught up with Wendy the other day. She went to visit a lady as part of the CREST programme who had not let anyone into the house, and they had been attempting for about 3 days. She knocked on the door. The lady spoke through the door “Who are you?”. Wendy attempted to introduce herself but was told “Stop treating me like a child”. Wendy again attempted to introduce herself and explain why she was there and again was told “Don’t treat me like a child. Go away. I don’t need you here”. So Wendy left as had all her previous colleagues. She was just about back at the office when she thought “No, there has to be another


way”. She turned around and went back. She started her conversation again, using formal names, asking permission to come into the lady’s home, promising that she would just love to meet her and would do nothing that day other than say hello, that she realised she wasn’t a child and would never presume so much and that she wasn’t going away. She was let in the door, she had a chat. She says they did nothing that day, BUT SHE GOT IN THE DOOR, and she is allowed back. She told her colleagues. They responded “Did you really go back? Why?” Wendy replied “Because I knew there had to be another way.” Isolation versus boundaries There can be a tension between these facets of isolation and clear boundaries. For a frail older person who is isolated, the home-based support worker can be the only practicable source of help (Patmore, 2004). Carers can be faced with being in a situation where they feel that if they don’t help, a person they genuinely care about will go without – perhaps without an evening meal when their support person is incapacitated for the day, or without a friendly chat over a cup of tea. It is perhaps no surprise specified tasks are often exceeded in terms of both the job description and the hours paid for (Barrett et al., 2012). However, because the home-based support workers are working in isolation, this is happening invisibly. There are complex risks for the client and the worker when boundaries are blurred. The Walking in Another’s Shoes programme’s one on one sessions can be the first time the

carers feel that they have the chance to sit down in the context of a nonjudgmental mentoring relationship and really talk through some of the boundary issues that they are experiencing. I got myself into a tricky situation. It happened for all the right reasons. You see he doesn’t have family living close by. I’ve known him and his wife now for 6 years. She died last year and he’s on his own. His health is getting worse. This kind of just crept up on us. I did it once out of kindness. Now it happens regularly. I know it’s wrong and it’s my fault. I’m scared to talk about it because I will get into trouble. But I can’t change it now, it’s too late. You see he phones me when his nebuliser won’t work. He doesn’t want to call the ambulance as he doesn’t want to bother them. He phones any time between midnight and 3 in the morning. Yes I go around and fix it. I can’t not. I couldn’t live with myself if I said no and anything happened. This is not uncommon: situations that start as a one-off, come from kindness, but then become a habit, an expectation. It takes skill to prevent this, have foresight as to consequences, and to know there are other options. In this example because the student could talk about it in the one-to-one sessions, she was able to come up with an alternative plan and then practise and successfully implement a new approach.

Conclusion One of our students told us that they wanted a card for their pocket, one they could hold with pride, one they could pull out when the day wasn’t going as well as they would like, when their stress was getting high, something they could hold onto when there was no one


else to help. So we asked what they wanted on it. And of all the things that they could choose they picked Brooker’s VIPS. They wanted to ensure that they treated the people that they were working with in a person-centred way. But they also wanted permission to make change. So we made up the card, we gave permission. We agree that people living with dementia and their loved ones deserve to be valued, to be known as the individuals they are, for people to consider what their perspective is and for them to have a positive social environment. Our dream is that these amazing support workers will also be treated like VIPS by those that surround them: to be valued for the incredibly hard work they do, to be seen for their strengths, to have their uniqueness understood, and to be given the support to make change.

References Barrett, P., Hale, B., & Gauld, R. (2012). Social inclusion through ageing-in-place with care? Ageing & Society, 32, 361-378. Brooker, D. (2004). What is person-centred care in dementia? Reviews in Clinical Dementia, 13, 215-222. Controller and Auditor-General .(2011). Home-based support services for older people. Wellington, NZ: Office of the Auditor-General. Gee, S., Scott, M., & Croucher, M. (2012). Walking in Another’s Shoes: Encouraging person-centred care through an experiential education programme. In

Good Practice Publications. Wellington, NZ: Ako Aotearoa http://akoaotearoa.ac.nz/ako-hub/goodpractice-publication-grants-ebook/person-centred-care Hale, B., Barrett, P., & Gauld, R. (2010). The age of supported independence. Voices of in-home care. Breinigsville, PA: Springer. Kedgley, S. and Laban, W. (2010). A report into aged care, What does the future hold for older New Zealanders? Wellington, NZ: New Zealand Labour, Green Party of Aotearoa, New Zealand and Grey Power New Zealand. Retrieved December 4, 2013, from http://www.labour.org.nz/sites/default/fil es/Aged%20Care%20Report.pdf Kitwood, T. (1997). Dementia reconsidered. Buckingham, UK: Open University Press. Kolb, D.A. (1984). Experiential learning: Experience as the source of learning and development. Englewood Cliff, NJ: Prentice-Hall. Kuske, B., Hanns, S., Luck, T., Angermeyer, M.C., Behrens, J., & Riedel-Heller, S.G. (2007). Nursing home staff training in dementia care: a systematic review of evaluated programs. International Psychogeriatrics, 19(5), 818-841. Mason, J., & Adeshina, A. (2011). The role of psychiatrists in developing the skills of dementia care workers. Advances in Psychiatric Treatment, 17, 372-380. Martin-Matthews, A. & Sims-Gould, J. (2008). Employers, home support workers and elderly clients: Identifying key issues in


delivery and receipt of home support. Longwoods Review, 6(3), 69-75. Moloney, S. (2005). Report for Central Region DHBs: Home support purchase and contracting models. Wellington, NZ: Capital & Coast District Health Board. Patmore, C. (2004) Quality in home care for older people: factors to pay heed to. Quality in Ageing, 5(1), 32-40. Whitney, D., & Trosten-Bloom, A. (2010). The Power of Appreciative Inquiry (2nd ed). San Fancisco, CA: Berrett-Koehler Publshers.

Authors Dr Susan Gee, Lead Researcher and Tracey Hawkes, Dementia Educator, Psychiatry of Old Age Academic Unit, Canterbury District Health Board, Christchurch.

Photo source P. 49: manashomecare.com



Establishing independence In a stage 3 unit Lisa Cooke Lisa Cooke describes the process of facilitating a change of approach in a residential unit for people with dementia, encompassing staff ideas and practices, family involvement, environmental changes, engaging residents in meaningful activities, incorporating principles of the Spark of Life Approach and changing the model of care.

I am an Occupational Therapist, one of a few OTs in New Zealand managing a Stage 3 facility. To me this is a huge honour. I qualified as an OT in England in 2000, and worked in older person’s mental health services for 9 years before moving to New Zealand. I received training from tutors at Bradford University on Person Centred Care and Dementia Care mapping, principles which I still believe in today. After one year as facility OT at Sprott House I was asked to become the unit manager for Duncan Lodge – an opportunity I grabbed with both hands and I am still very thankful to my managers for believing in me. The Clinical Services Manager and General Manager had a clear vision of what they wanted for Duncan Lodge: “replicate normal daily living as far as possible within a safe, comforting environment while maintaining a high quality of care”.

Sprott House had also adopted the Spark of Life approach and my direction was to implement this in Duncan Lodge. As an OT this vision of replicating normal daily living fitted in well with the philosophies I believe in, as humans all need to feel they have a purpose and a meaning and that we are all worth something. I made a list of things I wanted to change: staff ideas and practices, family involvement, environmental changes, engaging residents in meaningful activities, incorporating principles of the Spark of Life Approach and changing the model of care currently in use. I soon found that staff were resistant to change. Some staff had worked in the unit for a long time and thought ‘their’ way was the only way. I asked myself why is this not working? My conclusion was my expectations were too high and I wanted progress overnight. How could I educate staff on trying


new ways of working? How could I get staff to trust in me? My answer: education, sharing ideas, and working alongside them. I undertook training sessions on the Spark of Life Approach so staff were more informed of the way we wanted Duncan Lodge to be. I listened to staff on the ways they worked and challenged them to try new things. In my capacity as an OT I completed washing and dressing assessments alongside caregivers and discussed alternative ways to enable residents to participate in personal care tasks and maximise their ability. Simple things like talking to residents throughout the task, giving residents a choice of two items of clothing, asking ‘today is it this or this’, giving residents a flannel to wash themselves in the shower – giving verbal or physical prompts, laying clothing out in order of sequence. Giving residents a choice on time of rising – my expectations were not that all residents would be up and dressed and in the lounge for morning tea. I also spoke with staff about their own cultural beliefs. From this I understood that the focus for staff was on making sure residents were washed, dressed, warm and fed. I spoke with staff on how we needed to think about what was important to our residents – had they always been dressed by 8am or did they like to walk around in their bed clothes and have a drink before dressing? How would staff feel if they were sound asleep and got woken up and put under a shower without knowing what was happening? I also did activities with residents so staff could see that residents were able to engage

in activities if they were meaningful to them. Staff challenged me as the ‘end result’ may not have been perfect. I explained that I was not concerned with the end result but that residents were engaged and wellbeing had been enhanced through participation. I developed rummage boxes and baskets and left them around the unit. Left linen out so residents could fold it if they wished, and magazines for residents to look through. Again staff challenged this, and I understood that to them it was important for everything to be put away and tidy. Thinking of the overall aim to replicate normal daily living I discussed with staff that Duncan Lodge was our residents’ home not a hospital and it was ok if things were left out. This was a way for our residents to connect with their surroundings and initiate activity for themselves thus enabling independence. Finally, staff embraced the changes. They saw how things I did with residents had a positive effect and they wanted to try it themselves. Also, because they knew what my expectations were, particularly about personal cares, they became more relaxed and willing to try new things. Because staff became more relaxed in their work so too did residents which assisted in creating a more ‘relaxed homely atmosphere’. To develop this further, I introduced ‘daily routines’ that staff could invite residents to join in. This included collecting morning and afternoon tea and helping to serve it, setting tables for lunch and dinner and wiping tables down, folding the towels or pillow cases and delivering clean towels to residents’ rooms. This helped the staff to adopt the Spark of Life approach by including residents in their usual daily tasks. It supported relationships with


staff and residents to enhance therapeutic rapport. Staff could also see that residents really enjoyed helping the staff to ‘do things’ and made them feel ‘useful’, thus boosting their feelings of self-esteem. I also asked staff to say ‘thank you’ to residents when they provided assistance in any way. I used this strategy also with staff to give positive reinforcement to the work they had been doing. I think this assisted staff to trust me and believe in what I was trying to achieve. Another way I thanked staff was to introduce a buffet meal for lunch one day a week for residents to enable them to choose what they would like to eat. Staff also share this meal. As well as a ‘perk’ for staff it also assists to make mealtimes a more sociable time, to promote a homely atmosphere and build relationships with staff and residents. I actively encourage staff to sit with residents in the afternoon to have a drink with them, chat about life, look through magazines, and go out for walks or into the community. Following the Spark of Life principles staff need to share part of themselves with residents and these activities encourage this. Staff now initiate activities with residents every day from walking, exercises, physical games and reminiscence. One member of staff even set up a Kapa Haka group which residents and families enjoy. Involvement in activities also assisted when residents display unmet needs. Afternoon activities, especially before dinner time, have assisted to support residents who become unsettled and want to leave the unit. Similarly, if residents want to ‘go home’ in the afternoon, staff will take them for short walks around the grounds and then invite them to

come in for a ‘cup of tea’ and ‘join us for dinner’. Family involvement I know from personal experience that the decision to admit a loved one into care is one of the hardest for a family member to make. I spent time speaking with families to develop a relationship and help me understand what their expectations were and what was important to them. Most families expressed a wish that their loved one be encouraged to participate in activities. We developed a life history profile and all new residents’ families are requested to complete this on admission. This gives staff the knowledge of likes/dislikes, what is important to the resident, usual routines, profession, holidays, and what interests the resident has, to hopefully aid a more settled admission period. The information is used to stimulate conversation with a new resident and also validate their life experiences. Environmental changes Duncan Lodge is a purpose built unit that opened in 2010. The environment creates the feeling of space and has natural walkways for residents. It is bright and spacious with a glass pavilion in the middle. The 24 rooms all have en-suites. Families are encouraged to bring artwork, photos of family members, or small items of furniture, like a familiar chair. This helps to create a more ‘homely’ environment, and staff can also use photos to get to know the residents better, as an opportunity for reminiscence, and to validate life experiences.


A small “pod” for interaction

The dining room used to be at the front of Duncan Lodge. Mealtimes always seemed to be noisy and ‘chaotic’ and this use of space just did not feel right. Our Clinical Services manager suggested changing the location of the dining room to the back of the unit which at that time was being used as a living area. The ‘old’ dining room area then became a ‘living area’. We created small ‘pods’ that increased the potential for interaction. Since these changes, we have noted that mealtimes have become very sociable and less chaotic, and residents began to interact more with each other without staff having to initiate this. Residents sat for longer periods through mealtimes and stayed after meals were finished, talked to each other and commented on the environment. Having the living room area at the front was more welcoming for visitors. The additional ‘pod’ area also created space where residents could sit with families and friends when

visiting. Magazines and ‘rummage’ items were left out on tables and residents took an interest in what was available. We observed that residents would socialise for a while, then move to another area to socialise with other residents. Laughter and conversation are now a regular part of the day. We recently changed our dispensary into a kitchenette area for staff, families and visitors. This is with the viewpoint that families and visitors are in essence visiting their loved one in their home and the normal thing to do would be to make themselves (and anyone else) a drink to enjoy while chatting. Families have responded well to this. Families also have swipe cards to enter/exit the unit, all adding to the ‘feeling’ that they are visiting someone’s home. We also hope to improve our outdoor space. Our current courtyard is used by residents but the layout does not maximise its potential. We have completed a draft drawing for a true sensory garden but need to raise around $100,000 to complete the project. This area


will add another room and residents can choose if they want to be inside or outside. There will be a washing area where residents can wash and hang washing out as they would if they were at home. The senses will be stimulated and private areas created for families to sit when visiting.

Spark of Life Approach The Spark of Life Approach has three core principles to ‘shift your focus’ and always emphasise the positives not the negatives, ‘share your heart’ by showing compassion, and ‘shine your light’ by being patient, having fun and being creative.

Engagement in meaningful activities Enabling residents to participate in meaningful and purposeful activity is one of the main aims at Duncan Lodge. This is why families are requested to complete a life profile, as described above. This information enables us to individualise activities for each resident. It highlights that certain people may not respond in group situations but would benefit from 1:1 interactions. Our activity coordinator runs a programme three days a week. We record activity for every resident every day so we can evaluate its effectiveness. We can see which residents do not attend group based activities so we can then focus on individual activities for them.

When I became the manager of Duncan Lodge I was asked to implement this approach into the unit. To counteract staff reluctance to change their working practices, I demonstrated clear expectations on how this approach could be used. I acted as a role model, demonstrating how a simple smile, comment and a thank you could make a big difference to our residents. Offering choice to a resident seemed at first to be a foreign concept to staff. I asked them to think about how they were in ‘control’ even over what drink a resident has. How did they know that the resident liked tea every morning, just because that was what they had always had, maybe for one day they may like a coffee or even a glass of water. I feel choice is the key to implementing this approach and giving residents the power to choose for themselves and thus enabling independence.

Most residents want to feel useful and that is why staff are encouraged to invite residents to assist them in daily routine tasks. To be effective, activities need to have an aim and also have meaning for the person. That’s why I believe we as staff really need to get to know our residents so a good therapeutic rapport can be built and staff and residents can work together. If residents feel that they are still ‘useful’ this can aid wellbeing, and residents hopefully feel they still have a purpose in life. If used correctly activities can assist residents to have more control over their lives and make informed decisions on how they spend their time, thus enabling independence.

Along with the three core principles of the approach it looks at ‘unmet needs’. Personally, I do not like the term ‘behaviours’. An unmet need is the resident’s way of letting us know that something is not right, it’s up to us as staff to figure out what this may be. Also within this approach it’s not for us as staff to judge a resident when an unmet need has been displayed, any compassion we have for residents has been lost if judgements are made. The Spark of Life categorises unmet needs into four areas – physical, social,


environmental and emotional. I gave staff ideas on what may trigger an unmet need - is the resident too hot or cold, hungry, thirsty, do they need the toilet, are they comfortable in a group setting, is the environment too bright, or noisy, has the resident done anything during the day to give them a purpose. My office door is always open for staff if they have any difficulties or concerns and we discuss strategies they could try with residents. Staff have become more empowered and use their initiative to attempt to find the trigger for the unmet need which in turn has enhanced resident care. We have decreased the amount of anti-psychotics used and for some residents even stopped them completely. Anti-psychotic medications have their place but are used as a ‘last resort’ after all strategies outlined above have been tried. Within this approach staff also have to be creative. For example, if a resident ‘picks things up’ as they are walking around the unit, the staff roster for example, I would see staff running up to residents and try and pull whatever item they had out of their hands. This would make the resident immediately become more agitated and could possibly result in an aggressive outburst. I asked staff why they react the way they did and the response was ‘they should not have it’; my response was a) why leave it out in the first place and b) does it really matter, what harm can it do? Staff always seemed puzzled by this response so I role modelled when this situation arose. I just say, thank you so much for finding this for me, I have been looking for it everywhere – usually the resident will give it back to me, and this then can boost someone’s self-esteem as they feel useful.

Within this approach you have to make every interaction with a resident a positive one, never focus on the negatives. Make every interaction an opportunity to boost selfesteem, a simple comment like what a lovely top you have on can immediately bring a smile to a face. Within this approach it is important to give residents the opportunity to care for others. If a resident is unwell it’s not uncommon for other residents to show an interest and sit with them or hold their hand. We encourage this and always say thank you for their care and support of others. By using the Spark of Life on the unit, staff have become more relaxed in their approach and offer choice to residents on clothing, food, drinks, time of rising for example. Adopting the principles has helped staff to think about residents on an individual basis and to see past the memory problem and see the person. By giving staff time to spend with residents, have a drink and chat this has given staff the tools to be creative with their approach and identify causes for unmet needs as they know their residents very well. Staff also give residents information to make informed decisions so residents get back some control in their lives. Changing the model of care When I took over as unit manager the emphasis to care appeared to be on physical health status. It seemed to be so important that residents were washed and dressed and had substantial food and fluid intake. There was very limited social interaction with residents and staff and any unmet needs displayed were due to the dementia. This was an area I really wanted to change. Although physical health is important, and food and


fluid intakes have to be observed it is only a small part in the care of our residents. Social interactions and wellbeing should be the main emphasis.

levels, care for others, promote autonomy and attempt to foster an environment of love and belonging and of course enable independence.

To really change the model of care, I spoke with my Clinical Services Manager about the long term care plans in use, which were very much focused on physical health and not really individualised. To truly implement the Spark of Life approach and to enable independence the Clinical Services Manager set about finding some alternatives to the current long term care plans.

Summary

The one we adopted was based on the BASICS bio-psycho-social model of care. This model assists staff in planning care for residents and supports remaining abilities and caring relationships. BASICS stands for biological, activities of daily living, societal, interpersonal, creative and symbolic. Now each resident has a long term care plan that is individualised to them. The care plans are also written for the caregivers, so they can clearly see what the goals and approaches are for each resident. Families are involved with writing the care plans and can make alterations. The care plans are then signed by me, a registered nurse, and the Enduring Power Of Attorney. The care plans are written in a way to maximise activity and suggest ways for care givers to enable independence. It also states clearly what residents enjoy doing and what activities residents may benefit from attending if they are invited. It recognises the principles of the Spark of Life Approach by suggesting strategies to enable residents to make informed choices, maintain current skill

Managing change is difficult, managing people and change is even harder. To enable independence effectively as professionals we need to     



  



Have a clear goal for the unit we work in – what is it you want to achieve Communicate this goal to the staff and always keep them fully informed Educate staff on new ways and ideas of working Work alongside staff to build trust and rapport Look at your environment – is it working for the residents – can any changes be made to enhance independence, create smaller ‘pod’ areas to increase social interaction of residents Integrate Person Centred Care into work principles – enable staff to see past the memory problem and see the residents Know your residents – their interests, likes/dislikes Have open lines of communication with families, GP, psychogeriatric services Focus on engaging residents in meaningful activities to maximise function and optimal abilities - introduce daily routines to your facility, develop rummage boxes for residents Look at long term care planning – look at how they could be developed to ensure independence is enabled


Changing staff culture can be a difficult process but it is an enabling one. I have watched staff grow and develop their skills because they were given the information and support to do so. Enabling independence for staff will enable independence for residents and ultimately enable independence for all in a stage 3 facility.

Reference BASICS model adapted for EDGE (Electronic Dementia Guide for Excellence) from Vickers, R. (1977). Originally modified with permission in Ronch, J.L. (1987). Specialized Alzheimer's unit in nursing homes: Pros and Cons. American Journal of Alzheimer's Care and Related Disorders & Research, 2, 10-19.

Author Lisa Cooke, Unit Manager/Occupational Therapist Duncan Lodge, Sprott House, Wellington.

Photo source P. 62: Photo courtesy of author Lisa Cooke


Coming to our senses Occupation focused sensory assessment, implementation and research – An interdisciplinary approach Marlies Dorrestein, Tina Chivers, and Margaret Fincken People with moderate to severe dementia who live in secure dementia care facilities have limited opportunity to participate in meaningful activities. In this chapter firstly the development of an occupation focused sensory assessment for this population is introduced. Next a sample page of the assessment is provided and explained. A description follows of how the assessment of selected residents is implemented in one specialist dementia care facility. Fourthly we describe how an individualised sensory based activities care plan is developed and integrated into the activities programme of the facility. Finally two resident examples will be given and implications for staff will be discussed.

The sensory assessment tool and implementation process which is the topic of this paper, was developed at a specialist dementia care facility in West Auckland, New Zealand. Seadrome Home and Hospital (hereafter called the facility) is a privately owned Specialist Dementia care facility, with a 20 bed Dementia Care Hospital and a 25 bed secure Dementia Care Rest Home. The facility has an absolute commitment to the residents’ quality of life and well-being: a belief that people with dementia are entitled to and able to enjoy life. The organisation’s philosophy includes: tapping into the creativity of individual residents e.g. through music, art,

dance; spontaneity of the moment; encouraging and enabling social interaction and communication through an innovative activities programme, which provides opportunities for meaningful occupational engagement. The facility follows a personcentred and relationship centred approach, with a view to inclusion and empowerment of the residents, and in keeping with the New Zealand Framework for Dementia Care (Ministry of Health, 2013). The occupational therapist currently has a consultancy role in the facility, but has longstanding practice experience in residential dementia care, and has been working with the facility’s residents and staff for a significant period of time.


Background to the development of the sensory assessment tool The facility recognises the importance of meaningful occupations in residents’ lives. Occupations are activities which are meaningful and enjoyable for a person and which contribute to that person’s physical, cognitive, social and spiritual wellbeing (Townsend & Polatajko, 2007). In spite of the focus on meeting individuals’ occupational needs, residents with moderate to advanced dementia (hereafter called residents) were not able to take part in the facility’s usual comprehensive activities programme. Due to limited cognitive abilities of these residents, it was difficult for staff to provide and/or maintain regular engagement in activities that were within the residents’ capabilities and enjoyment. One of the challenges faced by the occupational therapist and the facility’s staff was how to assess the residents’ remaining abilities and provide opportunities for meaningful engagement in activities that are appropriate to their needs and are sustainably implemented by the staff team. Existing functional and cognitive assessments did not produce the outcomes that were easy to translate into the provision of meaningful occupations for these residents’ remaining level of ability. We searched for an assessment and intervention approach that might suit the needs we had identified. This was completed with involvement from third year occupational therapy students from the Department of Occupational Science and Therapy at Auckland University of Technology (AUT) in 2009 and 2010.

Brief literature review Generally, older people in residential care have limited opportunity to participate in meaningful occupations, thereby being subject to occupational deprivation (Dorrestein, 2006; Dorrestein & Hocking, 2010; French, 2002; Wood, 2005). In Dementia Care facilities this situation is even more pronounced for residents with very limited cognitive and functional abilities, due to the challenges involved in identifying remaining abilities and sustaining appropriate interventions by staff involved in their care (Dorrestein, 2006). An under-stimulating or inappropriately stimulating environment can result in sensory deprivation (Baker et al., 2003), which has been shown to have negative effect on people in general (Solomon et al. as cited in Baker et al, 2003) and specifically on the behaviour of people with dementia (Loew & Silverstone as cited in Baker et al., 2003; Bowlby, 1993), for example: lack of engagement with others and within their environment, restlessness, agitation, vocalisations, apparently aimless wandering, or simply “just sitting” or standing with little or no verbal communication. These behaviours may indicate a lack of well-being in the person (Brooker, 2005). Even in an environment with positively rated features for a secure dementia unit, residents may still not be engaged socially or occupationally for a large proportion of the day, resulting in agitation and distress (Wood, Harris, Snider, & Patchel, 2005). In order to address the effects of sensory deprivation, various forms of (multi-) sensory stimulation (e.g. Snoezelen) have been described in the literature. Studies have explored the outcomes of multi-sensory


stimulation groups on individuals’ mood and behaviour (Baker, Bell, Baker, & Gibson, 2001; Baker et al., 2003; Milev et al., 2008); on functional performance (Collier, McPherson, Ellis-Hill, Staal, & Bucks, 2010); or a combination of these (Finnema, Dröes, Ribbe, & Van Tilburg, 2000; Staal et al., 2007; Van Weert, Van Dulmen, Spreeuwenberg, Ribbe, & Bensing, 2005). The provision and targeted outcomes of sensory stimulation fit well with occupational therapy’s main concern of enabling occupation (Townsend & Polatajko, 2007). This fit is evident by its inclusion in occupational therapy literature since the 1960s (for examples see Bowlby, 1993; Gordon, 1983; Paire & Karney, 1984; Robichaud, Hébert, & Desrosiers, 1994) Where the focus of this project differs from the literature on sensory stimulation, is that a structured observational process described here forms the basis for the implementation of an individually tailored intervention or care plan. This assessment process has an occupational focus, i.e. the sensory cues offered to the resident during the assessment time and during implementation are inherently linked to occupation within the everyday personal care and leisure routines of the resident. An occupation focused sensory approach has been described in the literature before by Bowlby (1993), however, this was focused on generalised sensory intervention rather than specifically focused sensory stimulation based on an individual resident’s most positive responses to specific sensory stimuli; the latter was the focus of this project. Another approach that supports the use of sensory based interventions to improve quality of life is the Sensory Modulation

approach (Champagne, 2011). This approach was developed within a mental health care context to identify and then utilise sensory interventions to assist with service users’ emotional disregulation. While Champagne (2011) identified potential benefits of sensory modulation for people with dementia, the assessment processes within this approach are designed primarily for a verbal response by the user, which was not suitable for the abilities of our targeted resident group.

Development of the observational sensory assessment tool A structured observational process was developed to assess the residents’ responsiveness to selected sensory experiences. The following elements of the Hierarchic Dementia Scale (HDS) (Cole & Dastoor, 1996) and Allen Cognitive Levels theory (Pollard, 2005) formed the basis for the process that evolved, due to the occupational therapist’s previous experience with both these resources. The HDS allows an assessor to start the assessment process at a level at which the person is likely to be able to achieve, in order to minimise unnecessary confrontation or sense of failure and frustration (Cole & Dastoor, 1996). Allen Cognitive Levels theory recognises that at the two lowest levels of cognitive performance meaningful interaction needs to be sensory based (Champagne, 2011; Pollard, 2005). The tool that was developed assists in identifying what sensory modalities individuals are still able or best able to respond to and how they respond to specific sensory experiences. The rationale for focusing on the senses rather than on cognition (the usual focus of assessments for


people with dementia) is that the presentation of a sensory stimulus does not make demands on the person’s cognitive abilities (Finnema et al., 2000) and offers the person the possibility of spontaneously responding to “an appropriately organized environment” (Robichaud et al., 1994, p. 555) in ways that can be observed and recorded on the assessment form. Another outcome of the tool is to provide meaningful and person centred sensory activity input which increases these residents’ occupational engagement, thus enhancing their well-being (Finnema et al., 2000). Due to the occupational therapist’s role and limited time at the facility, the decision was made to make the tool a team-based approach.

Implementation of the tool Staff selection and education Specific staff members were invited to be part of the “sensory assessment team”. They were selected for their specific abilities (i.e. showing significant interest in the residents and with skills to interact well) and roles within the team: the diversional therapist, two care assistants, the hospital charge nurse, and the manager who is an RN. Before staff were able to take an active role in the assessment process, education sessions were provided by the occupational therapist. Education focused on the structure of the form (see Figure 1. for a sample page), an exploration of the terminology and codes used on the form (Figure 2.), a demonstration of how to offer the sensory cues, objects or activities to individual residents and how to observe residents’ responses. Staff were made aware of the importance of just offering the sensory cue, object or activity, then ‘just noticing’ and

documenting the individual’s responses without expecting or asking for a particular (e.g. ‘correct’) answer or response, and/or responding to the resident’s reaction. In addition, education was provided on how to document responses or lack of responses from the resident on each form. A session of practical application followed in which the occupational therapist observed staff members using the observational assessment with a resident and providing feedback and further coaching as needed. Staff members chose a sense they would like to work with on an ongoing basis, and that became ‘their’ element of the process, in order to develop familiarity and a sense of competence with it. Sensory observation process On a regular basis, prior to the start of an assessment a resident is selected for the sensory assessment in discussion with staff. Each sensory team member then spends time with that resident offering a variety of the listed sensory cues on their form, mostly as part of their usual routines for the following week (as all staff are involved in some way in the activities programme). This may include making use of information already known about the resident’s past interests or life experience, which may not be listed in the cues column on the sensory assessment form. Recording the results Following the assessment period the sensory team meet to discuss the outcomes. Each sensory team member reports back on their observations. Sensory cues, objects or activities eliciting a positive response, e.g. engaged gaze or interest, communication and/or participation, as well as signs of positive affect (Wood, 2005), and

Figure 1: Sample page of the structured observational process 71 | Proceedings of the NDC Dementia Knowledgesensory Exchange Forum | 2013 Responses Tactile Stimulus Cues It is not expected that all the stimulus cues need to be offered. The stimulus cues start with a lower level of response through to a higher level of response.

Responses include turning the head, moving any body part toward/away from the stimulus cue, or any other demonstration of interest or dislike. E

C

P

AP

AN

AX

Comment / Item(s) most engaged with

Record whether person spontaneously taps, rubs, sucks etc. Responses to care activities involving touch: e.g. hand over hand feeding, tooth-brushing, washing or combing hair, washing face, washing other body parts Response to deliberate caring touch (e.g. hand massage, back / shoulder massage, foot massage, hair brushing, face massage), and the same using a ‘massager’, using different pressure (light touch, stronger touch) Responses to water: e.g. shower, bath, foot spa, hand basin Responses to providing tactile cues using utensils: e.g. place cup in dominant hand (cup may need adaptations); place spoon in hand; place flannel in hand. Responses to providing a variety of tactile cues using objects of potential interest placed in person’s hand : •textures (e.g. smooth, rough, fluffy, spiky) •weights (e.g. heavy, light, very light) •temperatures (warm, cold e.g. wool, metal) •shapes (round, angled, irregular, large, small) * Potential for animal assisted therapy; may need to guide hand of resident to pat animal. Responses to tactile activities presented: e.g. planting, working with paint / fabric/ paper/ glue, cooking activities e.g. making dough; ball / balloon throwing. Key for codes E. engaged gaze / interest C. communication Figure 2. Explanation of codes P. participation AP. apparent affect = positive AN. apparent affect = negative M: movement

e.g reaches, pushes away, looks at object or looks away, actions involving object

General comments:

for recording responses (adapted from Wood, 2005)

In the first column, the sensory cues to be offered are listed in a hierarchic order, from least demanding to allowing a somewhat higher cognitive level of engagement. The next column provides space to record the person’s level and type of response. The final column provides space for additional comments, other sensory cues offered, and observations by the staff member who has completed this part of the assessment process. (* objects of interest to the resident will be incorporated in specific activities)


Codes

E

Engaged gaze / interest

C

Conversation

P

AP

Participation

Apparent affect = positive

Some level of intentional involvement with, awareness or watching of, others or the physical environment. This code can be applied if person has eyes closed, where active responsiveness to the environment is observable, such as tapping feet to music or engaging in conversation Sustained efforts to communicate with someone, whether in coherent, incoherent or nonverbal fashion Sustained engagement in some activity or task in the absence of agitation or distress. Simply being in an activity situation where activities are going on, but not participating in those activities, does not count as participation.

Expressed or observed signs of emotional response: Interest or pleasure

AN

Apparent affect = negative

AX

Apparent affect = neutral

No particular emotional response expressed or observed

M

Movement

Upright exercise or walking in the absence of agitation or distress

Expressed or observed signs of emotional response: Anger, anxiety / fear or sadness / depression

Figure Sample of a Sensory Summary (following informalExchange structuredForum sensory| 2013 73 |3.Proceedings of the NDC Dementia Knowledge assessment)

Name: Betty (pseudonym) __________________ Preferred Name: Number:

VISUAL

sight

AUDITORY

hearing

GUSTATORY taste

TACTILE touch

OLFACTORY smell

________________________

KINAESTHETIC

movement

Morning Tea Milo made with milk with 2 marshmallows

Look at Cat books, animal magazines encourage Betty to look at the pictures & turn the pages of the book.

Music in her room Mario Lanza with an orange to eat.

Afternoon Tea Coffee with 1 sugar

Fabrics, looking at different fabrics, folding, exploring the texture.

Take Apricot the cat into Betty’s room, encourage her to stroke Apricot the cat.

Supper Milo made with milk with 2 marshmallows Poetry reading

Enjoys  Oranges/Mandarins  Orange juice  Ice cream  Chocolate topping Classical Music Group For 45minutes

Take Apricot into Betty’s room, encourage her to stroke Apricot.

Weather permitting wheelchair ride outside looking at the garden or over to the park or Walking inside, looking outside


75 |4.Proceedings of theactivities NDC Dementia Knowledge Exchange Forum | 2013 Figure Sample of sensory timetable MONDAY

TUESDAY

WEDNESDAY

THURSDAY

FRIDAY

SATURDAY

SUNDAY

NOTES

Morning Tea Milo made with milk with 2 marshmallows

9.30am Poetry Reading

2.15pm in Betty’s room for 20 minutes. Look at Cat books, animal magazines encourage Betty to look at the pictures & turn the pages of the book.

2.15pm Music in her room Mario Lanza with an orange to eat.

2.15pm Weather permitting wheelchair ride outside looking at the garden or over to the park or Walking inside, looking outside

1.15pm Classical Music Group for 45minutes

10.30am Fabrics, looking at different fabrics, folding, exploring the texture.

10.30am Weather permitting wheelchair ride outside looking at the garden or over to the park or Walking inside, looking outside

10.30am Weather permitting wheelchair ride outside looking at the garden or over to the park or Walking inside, looking outside

Afternoon Tea Coffee with 1 sugar

Supper Milo made with milk with 2 marshmallows Betty enjoys  Oranges  Mandarin’s  Orange juice  Ice-cream  Chocolate topping


corresponding activities are documented and summarised in a sensory summary (for an example see Figure 3). Any negative responses can be noted in the notes column. This summary is comparable to Champagne’s “sensory diet” (2011, p. 118) – an overview of what sensory cues a person responds to and how. The sensory summary is kept in the resident’s file and displayed in the resident’s room. Images are used on the forms in order to make it easy and appealing for family and/or other visitors to make use of the information, e.g. engage in a preferred activity with the resident during a visit. The team discusses and agrees on an individually tailored intervention plan for the resident (for an example see Figure 4). The identified activities for the individual are subsequently included in the general activities timetable. All of the care staff, including those who are not members of the sensory assessment team, engage the resident in identified activities within the routine of full time care, as documented on the weekly activities timetable in the resident’s area, i.e. the rest home or hospital. Activities documented for each resident can be offered at any time during the day or night, as most appropriate or needed for the resident at the time.

Outcomes and discussion Research The facility collaborated with a University of Auckland Psychology Master’s student to evaluate whether some of the observed and anecdotal responses were supported through structured research of this sensory based assessment and intervention approach. The outcomes of this research will be published elsewhere. While the research did not identify any ongoing positive outcomes during the observation times after the interventions,

there were many positive outcomes (i.e. desirable responses) for most of the participants in the study during the interventions. Impact on residents Informal observations of the residents with whom this approach has been used at the facility revealed some of the following responses for different residents: enhanced responsiveness, enhanced spontaneous communication, enhanced level of alertness and awareness of others, along with reduced agitation, and reduced aimless wandering. Some of these responses were sustained over time and some of the responses revealed past meaningful connections that staff had not been aware of previously. Example: Betty (pseudonym), whose sensory summary and activities timetable is used for illustration in this chapter, has been a resident for a number of years. During this time, she usually looked unhappy, had minimal verbal communication, and did not want to participate in any group or individual activities offered, apart from being interested in the facility’s cat. During her sensory assessment, Betty responded with great interest to being shown a box with pieces of fabric. She carefully selected specific pieces of fabric and folded each of them meticulously. When offered and facilitated to create a picture with pieces of the fabric, she made very definite choices about which fabrics to include, how they should be arranged (including some of them being scrunched up), and where they should be placed on the canvas. Sometime later staff learnt from a visitor that Betty’s mother had been a seamstress and Betty grew up “surrounded by fabrics” in the family home. Following implementation of Betty’s sensory based activities plan, in general Betty


is now seen to return smiles, is talking more and has opportunity to engage in activities which she obviously enjoys. The content of her verbal comments is still completely muddled; however, the intonation and nonverbal cues are clearer.

The interest from the diversional therapist, the registered nurses and caregivers has been maintained and this interest was further developed by the educational value of the approach and by staff witnessing the positive outcomes for residents and for themselves.

Staff experience Staff who were initially selected for the project responded enthusiastically. They realised that they were getting to know the selected residents a lot better, and were therefore better able to meet their needs. Additionally they realised that they were developing new skills in observation and reporting. All of this generated a sense of pride and increased personal interest in their job. They took great care in their part of the assessment process and the amount of detail provided in relating the results to the team was remarkable. Other caregiving staff became involved in the activities designed for the residents in the sensory programme. These staff members also responded positively, as generally they were engaging a resident in individual activities he or she was able to respond to and enjoy, and staff could see the residents respond to them personally.

Opportunities for further development are recognised, as the tool’s validity and interrater reliability have not been researched. The tool described in this chapter is not a standardised assessment, it is an informal, though structured, observational tool, the results of which need to be incorporated into a regular individually focused activities timetable for it to be of real value to the resident’s quality of life.

Implications for management It takes time and interest to develop and implement an approach like this. “Time is money” and time spent on activities (the programme overall and the occupation based sensory assessment and implementation) needs to be high on the list of priorities, as is the case in this facility. Since this sensory programme is person-centred and relationship-centred, aiming to improve the quality of life of people with moderate to advanced dementia, it fits well within the philosophy and commitment of the facility.

In this chapter the development and implementation is described of a team based, structured observational occupation-focused sensory assessment approach in a secure dementia care facility, for people with moderate to advanced dementia. The aim of the tool is to identify a reasoned foundation for facilitating specific sensory based occupations for these residents, who often show signs of lack of wellbeing, and who are usually unable to participate in a facility’s regular activities programme. The overall aim of improving residents’ quality of life appears

Furthermore it would be useful to explore in more depth the possibility of integration of the Sensory Modulation assessment (Champagne, 2011) with this occupation based sensory assessment, bringing it into alignment with an approach that is gaining recognition in mental health services in New Zealand and that is starting to be used by occupational therapists in dementia care.

Summary


to have been successful by incorporating the assessment outcomes into an individual person-centred sensory activities plan. Opportunities for further development have been identified and discussed.

References

Dorrestein, M. (2006). Leisure activity assessment in residential care: Improving occupational outcomes for residents. New Zealand Journal of Occupational Therapy, 53(2), 20-26.

Baker, R., Bell, S., Baker, E., & Gibson, S. (2001). A randomized controlled trial of the effects of mulit-sensory stimulation (MSS) for people with dementia. The British Journal of Clinical Psychology, 40, 81-96.

Dorrestein, M., & Hocking, C. (2010). Maximising participation for older people: Scoping the occupational therapy role in residential care settings. New Zealand Journal of Occupational Therapy, 57(2), 4955.

Baker, R., Holloway, J., Holtkamp, C. C. M., Larsson, A., Hartman, L. C., Pearce, R., ... Owens, M. (2003). Effects of multi-sensory stimulation for people with dementia. Journal of Advanced Nursing, 43(5), 465477. doi:10.1046/j.1365-2648.2003.02744.x

Finnema, E., Dröes, R.-M., Ribbe, M., & Van Tilburg, W. (2000). The effects of emotionoriented approaches in the care for persons suffering from dementia: A review of the literature [Article]. International Journal of Geriatric Psychiatry, 15(2), 141-161.

Bowlby, C. (1993). Therapeutic activities with person’s disabled by Alzheimer’s disease and related disorders. Gaitherburg, MD: Aspen Publishers.

French, G. (2002). Occupational disfranchisement in the dependency culture of a nursing home. Journal of Occupational Science, 9(1), 28-37.

Brooker, D. (2005). Dementia care mapping: A review of the research literature. The Gerontologist, 45(Special Issue 1), 11-18.

Gordon, B. H. (1983). Aspects of dementia care and occupational therapy intervention. Journal of the New Zealand Association of Occupational Therapists, 34(2), 11-13.

Champagne, T. T. (2011). Sensory modulation & environment: Essential elements of occupation (3rd, revised ed.). Sydney, Australia: Pearson Australia Group. Collier, L., McPherson, K., Ellis-Hill, C., Staal, J., & Bucks, R. (2010). Multisensory stimulation to improve functional performance in moderate to severe dementia-interim results. American Journal of Alzheimer's Disease and Other Dementias, 25(8), 698-703.

Milev, R. V., Kellar, T., McLean, M., Mileva, V., Luthra, V., Thompson, S., & Peever, L. (2008). Multisensory stimulation for elderly with dementia: A 24-week single-blind randomized controlled pilot study. American Journal of Alzheimer's Disease and Other Dementias, 23(4), 372-376. doi:10.1177/1533317508316681 Ministry of Health. (2013). New Zealand framework for dementia care. Retrieved


from http://www.health.govt.nz/publication/ne w-zealand-framework-dementia-care Paire, J. A., & Karney, R. J. (1984). The effectiveness of sensory stimulation for geropsychiatric inpatients. American Journal of Occupational Therapy, 38(8), 505-509. Robichaud, L., Hébert, R., & Desrosiers, J. (1994). Efficacy of a sensory integration program on behaviors of inpatients with dementia. American Journal of Occupational Therapy, 48(4), 355-360. Staal, J. A., Sacks, A., Matheis, R., Collier, L., Calia, T., Hanif, H., & Kofman, E. S. (2007). The Effects of Snoezelen (Multi-Sensory Behavior Therapy) and Psychiatric Care on Agitation, Apathy, and Activities of Daily Living in Dementia Patients on a Short Term Geriatric Psychiatric Inpatient Unit. International Journal of Psychiatry in Medicine, 37(4), 357-357-370. Townsend, E., & Polatajko, H. (2007). Enabling occupation II: Advancing an occupational therapy vision for health, well-being, & justice through occupation. Ottawa, Ontario: CAOT Publications ACE. Van Weert, J. C. M., Van Dulmen, A. M., Spreeuwenberg, P. M. M., Ribbe, M. W., & Bensing, J. M. (2005). Behavioral and mood effects of snoezelen integrated into 24hour dementia care. Journal of the American Geriatrics Society, 53(1), 24-33. Wood, W. (2005). Toward developing new occupational science measures: An example from dementia care research.

Journal of Occupational Science, 12(3), 121129. Wood, W., Harris, S., Snider, M., & Patchel, S. A. (2005). Activity situations on an Alzheimer's disease special care unit and resident environmental interaction, time use, and affect. American Journal of Alzheimer's Disease and Other Dementias, 20(2), 105-118. doi:10.1177/153331750502000210

Authors Marlies Dorrestein, Lifeworks Occupational Therapy; Tina Chivers and Margaret Fincken, Seadrome Home and Hospital, Auckland.

Acknowledgements We thank Buthaina Al Aufi, Adelia Sadler and Austen Gillman for their enthusiasm and contribution to this project in the early stages of its development. Thank you to Mae Hensman for her dedication to and enthusiasm in researching the outcomes of this approach. Thanks also to the owners and the Seadrome staff team for their ongoing support and interest in the development and implementation of this project

.


“Our residents don’t live in our facility, we work in their home” Our journey towards resident-centred care Jenny Prentice and Trish Shallard

This paper describes a change process towards more resident-centred care in a dementia unit. It describes the facility and the issues faced, what they did to create change, and provides cases studies of the residents.

Where were we? Woburn Home is a Presbyterian Support Central (PSC), Enliven, Aged care facility, in Lower Hutt. The facility has 110 beds – 43 Hospital, 42 Rest Home and 25 Stage 3 Dementia beds. The care at Woburn is guided by the “Eden philosophy” which is epitomised by the quote “Our residents don’t live in our facility, we work in their home”. Our task is to provide antidotes to the three plagues of ageing – helplessness, hopelessness and boredom.

In 2010 the Dementia Unit was run as a separate unit within the wider facility. Some of the practices and processes, while essentially following the PSC guidelines, were given their own style and diverged from other areas in the facility e.g. different forms kept in different places, different rostering techniques. This made it very difficult for the Registered Nurses (RN) who cover the whole facility to provide the required standard of care when there was no consistent approach.


The Unit was staffed with dedicated Health Care Assistants (HCA) who did not often mix with others in the facility. The pool of knowledge and skill was rapidly shrinking and the staff becoming isolated. We were running the risk of complacency in resident care and doing things the way we always had – because no one challenged any practices or learnt from different view points. Rumours were rife about the “bad” behaviours of the residents and some staff were fearful of doing shifts in the Dementia Unit, in fact many regarded working there as a punishment. The culture being built (behind closed doors) was one of bullying and conservatism. Any new or innovative ideas were stamped out as not being “the way we do things around here”. Residents were safe but the respect and regard for them as individuals was not often evident. It became clear that if staff do not treat each other with respect they certainly won’t be treating residents this way. The falls, challenging behaviours and complaints continued at a fairly high level. The staff attitude was not one of finding solutions to problems with the resident’s best interests at the centre of that process. It was more about providing a routine that suited the staff and the hours they worked.

What did we do? This is in effect a change process and was fundamentally driven by three levers of change - Training, Staffing (including rostering) and Environmental changes. Training The training was mostly through our Compulsory Training Day (CTD) and the Careerforce Limited Credit Programme (LCP) Dementia Unit standards. We had a number

of staff who needed to do the LCP qualification to meet contractual obligations with Hutt Valley DHB so we ensured we had an on site assessor to support this process. We also were stricter with those who didn’t want to do the qualification and they were no longer rostered to work in the Dementia Unit. We are fortunate to have a large facility so we can accommodate this change to working areas and still meet the guaranteed minimum hours in the employment contracts. CTD is held every month and covers the topics set by PSC Central Office. In addition we worked with the Nurse Practitioner, Older Persons Mental Health Service, Hutt Valley DHB, to develop a short, interactive session on “Understanding Dementia”. This training day is for all staff (clinical staff, services staff and administration staff), on the basis that we have people living with Dementia in all of the facility, not just the secure unit, and all of the staff need a basic understanding regardless of their role here. This has increased awareness and stimulated debate on why our residents behave as they do. All these discussions are held with less judgement and more compassion for their situation. The involvement of all staff has had some unexpected results. Some of the cleaning staff spend some of their lunch break assisting residents to eat; kitchen staff are providing food all day, and more finger food; care staff requesting to work shifts in the secure unit and providing a higher standard of basic care to those who are frail. This last point has been backed up with positive feedback from our GP. We have found that when HCAs have been trained in how to provide full care for frail residents in our hospital then they are able to


provide it when residents in the Dementia Unit require this level of care. This does not replace re-assessment if required but does mean we can provide appropriate care in the short term if required. In the past when residents became frail or ill this may have resulted in re-assessment and new placement (which was very disruptive for both family and resident) or very disgruntled staff who believed that the solution was to increase the number of staff. In fact, the answer proved to be exploring what and how tasks were being done, not how many people were doing the tasks. Staffing We now have a senior RN who coordinates the day to day care, sets the standards, provides leadership and support to staff and families. As mentioned, a number of staff are requesting to work in the Dementia Unit and they are participating in activities e.g. outings, setting and clearing tables, newspaper reading, games – previously most of this was left solely to the Recreation Officer but now is part of every staff member’s role. The staff are encourage to “know” residents and become detectives to work out why behaviour that challenges is occurring and what we can do about it. One resident who worked for the local city council has a broom to sweep up leaves and a bin to collect them in – he is busy all the time and seems happier in himself. Another example of this supported independence is encouraging residents to have teapots on the table. Some now will pour tea for others and many have several cups. Despite using the very best china we have had no breakages to date, and for one resident, decreased incidence of urinary tract infections. The residents also set tables, put

dishes away in the kitchen, have their own garden and grow vegetables, go on outings and enjoy entertainers from time to time. Some staff are anecdotally reporting more satisfaction in their work in this Unit and more are requesting shifts in this area. Staff reliability has increased and absenteeism has decreased. We are increasingly recognising the significance of the role of the Recreation Officer in guiding and facilitating activities. There is now a regular meeting in the morning to plan the day’s activities and provide clarity to the staff as to what activities will be happening. This increased use of Recreation time and regular planning meetings has made a significant difference to the well-being of residents and reduction in disruptive behaviour. It is an area we will continue to explore for the wider facility. Environment We have created areas that are quiet and areas with activity. Not all residents like to be with others, some have intolerance to too much noise – now they can get some “quiet time” if they need it. The TV is not going with meals, and music is used to enhance the activity as opposed to being the only input. There is a noticeable change in some who are no longer so bent over or falling frequently because they are tired. They can now be persuaded to sit down for a time and do an activity and not constantly pace. Staff meetings are well attended by staff and residents. Often this is a time that some of the busier residents will sit and participate. Now the meetings are held in the dining room


where anyone can attend, not in the office with the door shut to residents.

has been positive impact across the whole facility.

Our environmental changes have involved all staff e.g. handrails were put along the edge of the garden at the maintenance man’s suggestion, to enable a resident with poor sight to walk outside without injury. This solution was well received by family and gave the resident more independence.

We estimate 80% of all our residents are living with some degree of dementia so the knowledge and learning is of benefit to all levels of care and all staff.

In the early days we encouraged residents and their families to choose a colour for the door of their room. It made the environment bright and cheerful. Now new residents can be restricted to the colour on the door of whichever room is vacant but the bright, less clinical atmosphere remains – and on occasion we have changed the colour at a specific request.

What do we see now? Some of the most tangible changes are fewer complaints, higher occupancy, lower levels of staff absenteeism, and anecdotally higher job satisfaction. Our residents seem happier and calmer. Families tell wonderful stories of their family member doing things they haven’t done for years e.g. playing the piano – albeit two or three tunes over and over. We continue to track the changes with a photographic record.

Summary This is a journey not a destination. We continue to have days that are difficult and see behaviour that confounds us. However we are getting much better at recognising the meaning in behaviour and finding creative solutions to any issues. There

The challenge for us will be to keep the momentum going and to keep making the changes we need to ensure our residents are at the centre of all we do.

Resources “Our residents do not live in our facility …….we work in their home.” Adapted quote from St Pauls Retirement Community, USA, a registered Eden Home. www.edeninoznz.com.au Website for information about Eden philosophy

Author Jenny Prentice, Facility Manager, and Trish Shallard, RN, Woburn Home, Lower Hutt, Wellington. Address correspondence to: [email protected]

Photo source P. 79: St Catherines Standard


can sustainably be engage in, and know how to

Learning to do things differently Innovations within an intellectual disability service framework Colene Herbert IHC has been engaged in a four year Successful Ageing Project and have made a strong commitment to enabling people to remain in their homes for as long as they can. There has been a drive to put everything in place that enables this to happen as safely and as easily as possible. This presentation will describe the areas of innovation and enhancement of existing can sustainably be engaged in, and know how IHC has been in 4-year project to cater for people who have an intellectual practice thatengaged have been implemented to build our capacity for this. related to and Successful Ageing for people with disability dementia. Intellectual Disabilities. It is premised on the view that IHC and IDEA Services wish to give effect to an Ageing in Place philosophy, but to do so from a more informed and strategically sound basis and utilising evidence based practice. The outcome of the project will be that we know what business and activity we

The project arose from the findings of a 2009 Scoping report in response to a need to know how prepared IHC and its service arms were to meet the needs of elders with disability. Through this project we have enquired into ways we can strengthen our practice as a total


organization to meet the needs of older people who have disabilities now and into the future. We started the project because: 





Families told us they were uncertain what we could provide for their family member as they got older. Demographics: Clearly we could see that the makeup of people within our services was changing. We wanted to be able to offer a real choice in living arrangements to people who were ageing.

There have been three stages to the project:





Older parents may not be alive so siblings, friends and previous carers are very important Most often there is no spouse or adult children to support

Dementia Screening Rates of dementia are extremely high in people who have Down Syndrome (approximately 60% by age 60). The rates in other people with intellectual disability are slightly higher than in the typical population (Bigby, 2004). Being able to respond to this group of people and provide good support is important in meeting the organisation’s commitment to ageing in place.

IHC, IDEA Services and Timata Hou believe that people should be able to age in place. This means that if it is their wish, we will support people to stay living safely in their home, or within our services, for their lifetime.

It was identified that using a screening tool would help staff to know when to seek further assessment, and would help GPs and specialists in their decision making. Specialist Services reviewed a variety of dementia screening tools for use within IDEA Services. The Dementia Screening Questionnaire for Individuals with an Intellectual Disability (DSQIID) (Deb et al., 2007) was selected as most appropriate. IDEA Services Ageing Champions and Timata Hou Specialist Services staff have been trained to use the DSQIID. This tool is being used whenever dementia is suspected and assists clinicians with the diagnostic process.

Dementia

Dementia Related Training for Staff

For people who have dementia and a learning disability we have learnt that:

A support worker competency analysis completed







Exploration : Broadening networks, addressing key policy gaps and preparing for exemplars. Strengthening Practice : Policy implementation and using exemplars to expand our knowledge Organization wide implementation and evaluation

 

Diagnosis of dementia is harder and can take longer For people with Down’s syndrome, the progression to end stages and death are usually much quicker than for those without a learning difficulty

in Phase One of the project was used as a guide when identifying training requirements and developing a training pathway for staff who were working with people who are ageing or developing dementia. The competencies fall comfortably into three content categories, and therefore project


work focused on finding learning and development solutions to meet these needs:   

General Ageing Dementia Advance Care Planning and End of Life Care

Dementia Specific training - Supporting Derek Supporting Derek (Watchman, Kerr, & Wilkinson, 2010) is a short drama DVD and learning package designed to encourage thinking about the world from the perspective of someone with dementia. Purchased from the Joseph Rowntree Foundation in Scotland, it covers topics such as          

Learning Difficulty and Dementia Understanding behavior Responding to pain Night time care Palliative care Developing supportive and meaningful environments Effective communication Meaningful activities Nutrition and hydration When a friend or relative has dementia

This training has been invaluable in helping the organisation respond to the learning needs of staff that are supporting people with Down’s Syndrome who are ageing, particularly those with dementia.

Housing Design A significant amount of work has gone into identifying the specific housing needs of older people with intellectual disability. Research

shows that a person’s home environment strongly influences their ability to remain at home as they age, and particularly near the end of their lives. The team liaised closely with Colm Cunningham and colleagues at Hammond Care in Australia, The Dementia Services Centre in the UK, The University of Auckland, and other palliative care specialists to identify what can make a home environment more likely to last the distance, particularly for people who have dementia and/or other deteriorating conditions and palliative care needs. After investigating a variety of options it was determined that the design principles that make a home “dementia friendly” have the added benefit of being generally “olderperson friendly” and “high support” friendly as well. The Dementia Design Checklist (Health Facilities Scotland, 2007) was adapted to suit the community home environments that are used by IDEA Services. Organisational ‘Ageing Champions’ were trained in design principles and the use of the checklist. When used appropriately the Dementia Design Checklist will assist services to: 

 

Assess their housing stock for suitability for older people (including those who have dementia) Make short and long-term changes Plan their housing needs for the future

This work on the Dementia Design Checklist resulted in the organisation winning the design section at the prestigious International Dementia Excellence Awards. This was the first time that an organisation outside of the aged care sector had won any of the categories.


Planning For Future Service Provision Data collection during phase one identified that there were numbers of people with “suspected” dementia, where no steps had been taken to seek diagnosis. The two main reasons for this were a) diagnostic assessment was not sought by IDEA Services, and b) GPs did not have enough information to indicate that onward referral to specialists was warranted. This is problematic – the best support and resources can only be accessed and applied when a support team knows what is causing difficulty for an individual. Having a diagnosis is a large part of that puzzle. In 2010 the Successful Ageing project gathered information regarding dementia and people using IDEA Services via a questionnaire. This was repeated in 2013. The information gathered through these internal surveys showed:     

In 2010 – 113 people were confirmed or suspected of having dementia In 2013 – 159 people were confirmed or suspected Of those who had a confirmed diagnosis there was a 53.7% increase Of those suspected of having dementia there was a 28.8% increase There were some regions that showed a higher proportion of people developing dementia than others

This information has been helpful in assisting IDEA Services to plan for future service provision and in anticipating areas of greater need.

It is important to IHC/IDEA Services/Timata Hou that all responses to a person’s changing needs are done in conjunction with the person, their family/significant others, agencies who offer expertise in dementia care, death and dying and with NASC agencies.

References Bigby, C. (2004). Ageing With A Lifelong Disability. London, England: Jessica Kingsley. Deb, S., Hare, M., Prior, L., & Bhaumik S. (2007). Dementia Screening Questionnaire for Individuals with Intellectual Disabilities British Jounal of Psychiatry, 190, 440-4. Health Facilities Scotland (2007). Dementia Design Checklist. Glasgow, UK: Health Facilities Scotland Watchman, K., Kerr, D., Wilkinson, H. (2010). Supporting Derek. York, UK: Joseph Rowntree.

Author Colene Herbert, Project Manager, IHC Successful Ageing Project. Address correspondence to: [email protected]

Photo source P. 83: IHC


Artzheimers 4. Darral Campbell

This chapter describes an art appreciation programme for people living with dementia, a collaboration between Alzheimer’s Canterbury and the Christchurch City Art Gallery. In late 2012 we (Lana Coles, Christchurch City Art Gallery, and Darral Campbell, Alzheimers Canterbury) began discussion about using art appreciation as a medium for stimulation for people with dementia. Whilst at the time no programs as such existed in New Zealand, the concept is not new in other parts of the world. It is recognized that art appreciation provides a mechanism of stimulation and socialization for people from all walks of life, and with a variety of disabilities, but in New Zealand we have tended not to look at the role art appreciation could play for older adults and those with

dementia. “There are a lot of programs for children and babies.” says Christchurch Art Gallery public project and education team leader Lana Coles. “We were thinking they don’t do very much for older citizens, who probably make up most of the audience at an art gallery.”


The benefits of remaining active and staying socially integrated are well documented in relation to dementia. Aside from the enjoyment and pleasure, encouraging people to remain stimulated can contribute to maintaining independence, increased understanding, and relief of anxiety and depression. Activity, stimulation, and social interaction contribute to well-being and selfesteem. (e.g., Woods et al’s 2012 Cochrane study cited by Netzer, 2012) Art is a powerful mechanism for evoking memories, and to stimulate emotions. Helen Bate (founder of Pictures to Share Community Interest Company) notes “For the majority of people with dementia and the associated problems of isolation and depression, the provision of suitable resources and activities is crucial to their mental and emotional well-being.” A study by Halpern et al. (cited by Bate, 2009) looked at the art preferences of people with and without dementia. The study found that people with dementia were as able as people who did not have dementia to express a preference for particular pictures, and that these preferences remained consistent over time. MoMa (Museum of Modern Art) New York began a program in 2006 called Meet Me At MOMA. The program offers small group sessions and workshops for people in the early to mid-stages of Alzheimers. The program involves presentation and discussion about art works. Caregivers and family can attend, but the primary focus is on encouraging people with dementia to discuss the works, and express whatever thoughts and emotions come to mind.

Macquarie University Art Gallery in Australia also developed an Art & Dementia Program in 2001 until 2005 when it ceased due to funding issues. It has since been revitalized and is being researched using a sociological framework. “From the outset this program has proved to be successful in not only building new relationships within our local community but in creating an art space that has engaged the audience beyond our expectations. We are witnessing art as a conduit in opening up dialogue for people with dementia whose world often exists in silence.” (Sarah Smyth-King, 2012). Our planning for our art appreciation group which we named “Artzheimers” included working with the existing art gallery volunteer guides, providing them with an introductory training in dementia and ideas and skills in engaging people with dementia. As the Christchurch City gallery remains closed due to earthquake damage, our sessions have been at one of our city libraries. Large ‘copies’ of the works are displayed and handed around the group while the guide presents information about the history, culture, artist, content of the art work. The group is encouraged to contribute their thoughts, feelings and ideas about the work. Each group has around 10-12 participants, caregivers can attend if this is helpful for the person with dementia. Postcards of the works are given to the participants to take home. Feedback from the participants and guides has been overwhelmingly positive. “I love the artwork. I’m no good at it myself but I appreciate it. Really see something in artwork. I made up my own little stories for what I think it’s about. That’s what it does for


me. It makes the old brain think and that’s what I need.” (June King, as quoted in Lee, 2013). Reviews with all the participants have provided very valuable feedback about what kind of works they prefer to view (narrative, portraits, NZ landscapes) and of how to structure the sessions. Particularly abstract works do not appear to work well for people with dementia. Art has proved a powerful mechanism for evoking memories, stimulating emotions, and encouraging people to share their thoughts and ideas in a non-threatening environment. There are no right or wrong answers in Artzheimers, and the stimulation and social connection has proved to work very well with our group. The success of our current Artzheimers group means we will commence a second monthly group in 2014, open to anyone living in the community with dementia.

References Bate, H (2009) Art, dignity and dementia – Living with dementia, Alzheimers UK website. Retrieved from alzheimers.org.uk/site/scripts/documents _info.php?documentID=899&pageNumbe r=2 Lee, F (2013). The art of urging those with dementia to think Christchurch Press, 31 May 2013. Retrieved from http://www.stuff.co.nz/thepress/news/8739661/The-art-of-urgingthose-with-dementia-to-think

Netzer, 2012. Mental Stimulation Slows Alzheimer’s Progression, www.ALZinfo.org. The Alzheimers’s Information Site. Retrieved from http://www.alzinfo.org/08/articles/preve ntion-and-wellness/mental-stimulationslows-alzheimers-progression Smyth-King, S (2012). Reconnecting: The Art and Dementia Program at Macquarie University Art Gallery A.mus.ine Spring 2012. Retrieved from http://amusine.typepad.com/art/reconne cting-the-art-and-dementia-program-atmacquarie-university-art-gallery.html

Resources Pictures to Share is a social enterprise which provides appropriate media for people with dementia. www.picturestoshare.co.uk To learn about the Art for Alzheimers’s program visit the website for the Museum of Modern Art. The website includes resouces for organisations and families. http://www.moma.org/meetme/

Author Darral Campbell, Manager Alzheimers Canterbury, Christchurch.

Photo source P. 87 ©Alzheimers Canterbury



Day programmes Effective Client-focused Dementia Day Programmes in the Community: Improving the Quality of Life for People Living with Dementia and Their Families Annie Weir and Christa Fouche

ammes

Dementia Day programmes play an important role in supporting the wellbeing of both older people living with dementia and their caregivers. This study investigated the elements that make up an effective client-focused dementia day programme and the methods used to measure outcomes. A mixed methods approach was employed with an international literature review, document analysis, interviews, focus group, online survey, site observations, and a photovoice exercise. The research revealed five core elements, including activities aimed at improved client functioning; caregiver benefits; workforce capability; cultural responsiveness; and service processes. Reporting and auditing processes as well as surveys were used to measure outcomes of day programmes. It is predicted that by 2026, 74 821 people or 1.5% of the country’s population will have some form of dementia and that this proportion will continue to grow (Ministry of Health (MoH), 2011). The provision of care

for people living with dementia in New Zealand is however not at the present time covered by a dedicated government policy and the New Zealand Government has yet to officially recognise dementia as a national


health priority. Instead the Health of Older People Strategy (MoH, 2002) is seen to also cover dementia-related care. A review of international policy frameworks highlighted that Australia recognised dementia as a national health priority in 2005. England released its National Dementia Strategy in early 2009. Scotland and Wales followed in June 2010 and February 2011 respectively. The United States has not advanced a national dementia strategy, but has passed legislation at the end of 2010 signalling a commitment to a national dementia plan in the future. In addition to signalling important shifts in dementia-related care in government policies internationally, commitment at this level has ultimately meant that more funding became available for the provision of dementia care at both the national and community level. Day programmes provide an important aspect of the care continuum supporting the wellbeing of both older people living with dementia and their caregivers. Day services can be divided into three models: the medical model, the social model, and the combined model (Van Beveren and Hetherington, 1998). Programmes operating under the medical model include skilled assessment, treatment, and rehabilitation goals. The social model programmes focuses on socialization and preventive services whilst a combined model has elements of both a social and medical programme, depending on individual client needs (Van Beveren and Hetherington, 1998). Despite these categories, there are significant within-model variations in service delivery. A range of intervention-specific studies document the impact or effectiveness of particular interventions offered as part of a day service. The programmes are often provided by not-for-profit organisations or

charitable trusts that are intrinsically connected to their respective communities through the services they have provided over a number of years. Funding for the day programmes is obtained through sources that include state funding, private client fees, bequests, donations and contributions in the form of volunteer work. There is wide variation in terms of dementia-specific or allinclusive adult day service delivery. Some providers make limited distinction between different groups and others provide separate guidelines for ‘Dementia and Memory Community Centres’ (Aged Care Australia, 2012). In New Zealand, some providers offer activities exclusively aimed at people living with dementia as part of programmes catering for all older people. However, for most providers, day programmes are open to all elderly individuals that require support and care on account of their health condition, and not specifically targeted at people living with dementia. Presbyterian Support Northern (PSN) Enliven has been providing communitybased support and care for older New Zealanders since 2002. They have been contracted by various District Health Boards to run day programmes in five upper North Island locations. While a notable proportion of their attendees are living with dementia, other clients do not have dementia and are aged 65 years or older, are of ‘lower level need’ or have other health-related conditions or disabilities. In adopting this open access policy, PSN Enliven clearly demonstrate how they have aligned their organisation and the services they provide with the Government’s Positive Ageing Strategy (Ministry of Social Development (MSD), 2001). The PSN Enliven community level day programmes aimed at


people living with dementia and the subject of this research are part of PSN’s adult day services to older people. Impact Research NZ was commissioned by PSN to investigate the elements that make up an effective client-focused day programme for people living with dementia and the methods employed to measure the quality of outcomes of day programmes. The focus of the research was on a day programme regarded as a nonresidential day service utilizing a social care model and although based in the community, excluded home-based services. Two overarching research questions guided the project: a. What are the elements that make up an effective client-focused day programme for people living with dementia? b. What are the methods employed by organisations to measure the quality of outcomes of their day programmes?

Methodology To address the research questions, a mixed methods approach was employed by the research team. Qualitative and quantitative data were collected between January and March 2013 from a range of stakeholders. A document review preceded the fieldwork. The review focused on organisational documents and published material on existing day programmes for older people living with dementia with the aim to identify common elements of effective programmes and measures utilised to assess outcomes as a context for the findings from the study. Data collection comprised structured observations and a photovoice exercise with people living with dementia; a brief survey and telephone

interviews with family members and/or significant others; interviews with and online questionnaires completed by day programme staff; individual interviews with the drivers providing transport to the clients; and interviews with key informants, including members of local District Health Boards. The clients who attend the PSN Enliven day programmes have been assessed and referred to the programmes by appropriate regional assessment teams such as those employed by the Needs Assessment and Service Coordination Service (NASC). While clients have a range of medical conditions or disabilities, many of the attendees have been diagnosed with dementia and are at different stages of the condition. Some for instance have early stage dementia and have only been attending the day programme for less than a month. Other attendees however have been living with dementia for many years and are much closer to requiring full-time residential care due to their personal circumstances and needs. A day in the life of a client living with dementia was captured through the photovoice exercise. A total of eight clients (four males and four females) consented. Drivers, caregivers and support workers involved with the participating clients on the day, also contributed to the photovoice exercise. The unstructured site observations provided the research team with an opportunity to meet some of the clients and staff on-site and to record clients’ experiences from a participatory perspective. Caregivers and support workers completed a brief questionnaire – a total of 32 completed questionnaires were analysed. Three team leaders, four caregiver participants and two drivers from each day programme


participated in the telephone interviews, while two support workers from each site participated in face-to-face interviews. Faceto-face interviews were also conducted with representatives from the Counties Manukau and the Waikato District Health Boards: the PSN General Manager for Enliven Services and the two area managers of both day programmes. The data from all the face-toface individual interviews as well as the recorded telephone interviews were combined and analysed using inductive thematic analysis. Individual interviews were audio recorded and transcribed. A thematic pattern analysis was performed on qualitative data from interviews and responses to openended survey questions. Quantitative data from questionnaires were entered into an Excel database for statistical analysis and used to generate descriptive tables and figures. The ethical considerations pertained mostly to anonymity and confidentiality. Participants’ informed consent was obtained in writing. A number of authors warn of the ethical issues, such as capacity and accessibility when using photovoice with populations experiencing various forms of illness and disability (Wiersma, 2011; Lal et al., 2012). The involvement of multiple actors in the collection of data and the careful attention of informed consent by caregivers in consultation with their family members were effectively utilised to manage these challenges. Moyle (2012) highlighted the influence of age and extent of cognitive impairment can impact on the level of participation. Taking this into consideration we decided to have those closest to the client help out with the photographs and provide context. Photovoice entrusted cameras to the hands of those closest to the clients, engaging

them and the clients in creating the clients’ ‘narratives’ and enabling them to act as recorders and interpreters. Although this is a fairly new method in the field of dementia research, we believe it was effective to enable participation at some level of the person living with dementia.

Key findings: Common elements Common elements of day programmes derived from the document review were considered alongside relevant literature and findings from the data to inform research question 1. Five main elements were identified. The research revealed that effective day programmes comprised five core elements, including activities aimed at improved client functioning; caregiver benefits; workforce capability; cultural responsiveness; and service processes. Reporting and auditing processes as well as surveys are reportedly used as methods to measure the quality of outcomes of day programmes. It wasn’t in the scope of the study to evaluate the actual effectiveness of these elements, but these elements are considered core to what people perceive an effective day programme should comprise. Measuring the effectiveness may be a useful focus for a future project. Activities aimed at improved client functioning The heterogeneity of programs, participants, and funding sources creates challenges in defining and measuring participant outcomes of adult day services. There have been mixed results in previous studies examining the improvement of client functioning among day programme participants (Gaugler and Zarit, 2001). However, social and physical activities


are widely regarded as an effective intervention for people living with dementia to improve participants’ social skills and social inclusion, raise their self-confidence and selfesteem, and minimize the risk of depression (Department of Health, 2009, Gallrach, 2010). Client engagement with activities in the programme under review included: physical exercise sessions and walking; arts and craftsrelated activities and music/singing; cooking/baking and gardening; individual activities (e.g. reading the newspaper or magazines); group-based games (e.g. board games, pétanque, bingo); watching DVDs and using the internet/computers; visits/outings to places of interest and shopping; group meals; interaction with animals; interaction with children; and conversations between participants. Caregiver benefits Families continue to be the greatest resource in helping frail older adults to live a high quality of life at home. Providing care to frail older adults can be stressful and result in a range of well-documented negative consequences, including clinical depression, health problems, social isolation, financial difficulties, and mortality (Schulz and Beach, 1999). With acknowledgement of mixed results in terms of the type of intervention, number of sessions, the setting, care receiver age, caregiver age, gender, type of caregiver– care receiver relationship (spouse vs adult child), initial burden, and study characteristics etc., it can on the whole be accepted that one of the core elements of day programmes is the benefit to caregivers. Effective day programmes include a focus on caregivers to enable participation in work and leisure activities, a reduction in stress and potentially

capability to support the client better as to delay institutionalisation. Three main themes emerged from the interview data on perceived benefits to the caregivers themselves by having their spouse or family member attend the day programme. These are: 1) ability to keep working; 2) a reduction in stress, and 3) being able to enjoy other activities. Additionally, the potential of delayed nursing home placement for the person living with dementia through focusing on the needs of the caregiver was raised. Workforce capability Effective day programmes employ staff that are well-trained and knowledgeable about dementia, possess key qualities, including the ability to build and maintain relationships, and clarity about their duties and expectations to manage challenges. The subthemes developed from the study comprised staff training, staff duties and key qualities of staff. Additionally, aspects of caring for people with dementia regarded as rewarding and challenging were highlighted. Findings suggest however that dementia can be regarded as a specialised field of practice and that base qualifications such as Career Force Level 4 papers focused on dementia and the goodwill and good intentions of willing individuals should be regarded as the absolute minimum workforce requirement. Cultural responsiveness Effective day programmes are responsive to clients’ and caregivers’ cultural needs, and staff members are able to address issues in caring for clients in a culturally appropriate manner. PSN where possible employ staff that reflect their client population and are able to communicate effectively with clients and


facilitate culturally appropriate activities such as waiata and Pasifika art and crafts. One caregiver noted that: “It was good to see Maori women on the staff, it gives me a feeling of safety” (Caregiver 8). Martin and Paki (2012) indicate that Maori clients with dementia are perhaps less likely to use day programmes; however, cultural relevance comprises more than assumptions about user profile; it highlights a core design issue for day programmes – this may present a challenge to many service providers. With a growing Asian population in Auckland catering for the needs of these groups will also challenge current service provision. Service processes Effective day programmes have a focus on service processes, including targeted communication about what happens at the day programme while enabling staff and caregivers to get to know each other better, and access to resources. Resources enable effective transport and serving of refreshments. This in turn enhances the ability to create a routine that strengthens a sense of security for the client. The most important advantage of adequate referral processes seem to be the efficient development of individual intervention plans with measurable outcomes and targeted support. In the programmes under consideration, clients have either free or paid access to transport arranged by the programme provider. Additionally, refreshments are served to clients during morning and afternoon tea and, as appropriate, lunch will also be provided. The importance of service processes on participant outcomes should not be underestimated. Determining the effect of

day programmes on individuals is a complex process that includes many variables and supposedly ‘minor’ elements, such as transport and food, may well be a major aspect for some participants and caregivers (O’Sullivan, 2011).

Key findings: Methods to measure the quality of outcomes The document review provided insights on the methods employed to measure the quality of outcomes of day programmes, which were considered in the context of relevant literature. The findings from the data were used alongside these insights to develop an understanding of the methods employed, in response to research question 2. Reporting and auditing processes The contracting District Health Boards (DHBs) have very clear expectations that PSN and other similar providers will participate in various formal activities which include reporting on quarterly and six monthly bases and engaging in auditing processes. This subsequently enables providers to use these measures to demonstrate what they are doing well, that the needs of the clients are being met, and also calls attention to any problems with how their service is being delivered. Quarterly reports are further augmented with a narrative report which is due every six months and is an ideal opportunity for service providers to put forward as one of the key stakeholders put it, ‘the good news stories as well as the issues’. The key stakeholders interviewed described how DHB audits of the day programmes, their facilities and staff are routinely carried out every two to three years. Interviewees did signal that one possible limitation of the auditing process is that the exercise is ‘only ever valid for one point in


time’ which is the day the auditors visit a day programme or service provider. One interviewee indicated that this problem is addressed by another level of service planning and monitoring that goes on below contract monitoring or at what could be described as ‘the client level’. Surveys While the majority of the reporting and auditing activities are formal and prescribed well before they take place, there are other methods available to the day programmes to produce evidence documenting and informing the extent to which they meet their external obligations. The PSN day programmes for instance participate routinely in results-based accountability (RBA) surveys to encourage client feedback and to monitor the quality of service delivery. These measures are aimed at both monitoring client outcomes and service improvement and signal a focus and commitment to best practice.

Discussion It is interesting to note that the research team was unable to locate any significant literature on the advantages or disadvantages of dementia-specific programmes vs day programmes for all older people. There are multiple studies reporting on the effectiveness of particular interventions for people living with dementia, for their caregivers and for workforce development in this context. However, the utilisation of these studies and related recommendations are not evident in the design of the day programmes under study. Although the preference for dementia-specific programmes in the context of adult day services for older people is not clear, meeting the requirements for an effective day programmes assumes growing

trends and directions for targeted interventions with specific populations, including caregivers. In reviewing the information available on selected day programmes in New Zealand, no reported outcomes for the programmes were identified. None of the programmes offered evidence with regards the impact or effectiveness of the programmes or any component thereof. Similarly, there was no information on methods employed by these programmes to measure the quality of outcomes of the programmes, other than reference to financial support received and the implied contractual obligations requiring engagement in reporting and auditing processes. It was therefore not possible to do any synthesis on this issue. This does raise questions about the nature and availability of evidence informing decisions regarding the design and implementation of day programmes. Key findings on the methods employed to measure the quality of outcomes of day programmes further highlight questions about the nature and availability of evidence to inform decisions regarding the design and implementation of day programmes. Both a conceptual framework and tools to measure the effect of interventions are lacking. A need exists to better describe and conceptualize individual and programmatic outcomes that can be implemented and measured in practice. Results-based accountability frameworks can be a useful mechanism to adopt an outcomes-focused reporting framework for the delivery of day programmes for people living with dementia and their caregivers.


References Aged Care Australia. (2012). ‘National Respite for Carers Program’. Retrieved January 29, 2014, from http://www.myagedcare.gov.au/agedcare-services/national-respite-carersprogram

Dementia Services: Guideline for district health boards on an integrated approach to mental health and addiction services for older people and dementia services for people of any age. Wellington, New Zealand: Ministry of Health.

Department of Health. (2009). Living Well with Dementia: a National Dementia Strategy – Implementation Plan. London: Department of Health (United Kingdom). Retrieved January 29, 2014, from https://www.gov.uk/government/uploads /system/uploads/attachment_data/file/16 8220/dh_094051.pdf

Ministry of Social Development. (2001). New Zealand Positive Ageing Strategy. Wellington, New Zealand: Ministry of Social Development. Retrieved January 16, 2014, from http://www.msd.govt.nz/about-msd-andour-work/publicationsresources/planning-strategy/positiveageing/vision.html.

Gallrach, F. (2010). Quality of Life of People with Dementia and Their Informal Caregivers – A Clinical and Economic Analysis in New Zealand. Unpublished PhD thesis, University of Canterbury, New Zealand.

Moyle, W., Murfield, J., E., Griffiths, S., G. & Venturato, L. (2012). Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing, 68(10), 2237-2246.

Gaugler, J. E. and Zarit, S. H. (2001). The effectiveness of adult day services for disabled older people. Journal of Aging and Social Policy, 12(2), 23-47.

Authors

Lal, S., Jarus, T. and Suto, M. J. (2012). A scoping review of the Photovoice method: Implications for occupational therapy research. Canadian Journal of Occupational Therapy, 79(3), 181-190. Martin, R. and Paki, P. (2012). ‘Towards inclusion: The beginnings of a bicultural model of dementia care in Aotearoa New Zealand’. Dementia, 11 (4), 545-552. Ministry of Health. (2002). Health of Older People Strategy. Wellington, New Zealand: Ministry of Health.

Dr Annie Weir, Director, Impact Research NZ, and Honorary Research Fellow, Faculty of Education, University of Auckland, and Christa Fouche, Research Associate, Impact Research NZ and Associate Professor in Social Work at The University of Auckland.

Acknowledgments We would like to warmly thank all the participants who offered their time and valuable contributions to this research project and acknowledge the contributions of Richard Griffiths and Sue Allison of the Impact Research NZ research team in the implementation of the study.

Photo source P. 91: John Michael Kohler Art Center

Ministry of Health. (2011). Mental Health and Addiction Services for Older People and


Developing dementiafriendly communities 5. Karen Smith The aim of developing dementia-friendly communities is to maintain independence and social inclusion for all people with dementia. This chapter looks at international dementiafriendly initiatives and introduces the Developing a Dementia-friendly Christchurch project. This project aims to gather insights from Christchurch people living with dementia about what would make it possible for them to live better in their community as the city rebuilds after the devastating earthquakes. The concept of dementia friendly societies has emerged in countless different ways across the world but the common thread that brings these initiatives together is the desire to promote a better understanding of dementia and to reduce the social isolation and stigma that is so often experienced by the person with dementia. Alzheimers Australia (2012, p.5)

Many communities around the world are undertaking initiatives to create dementiafriendly communities aimed at removing the stigma often associated with dementia; reducing the risk of social isolation, which has been recognised as a contributing factor in the rate of progression (Alzheimer’s Society UK, 2013; Hughes, 2012; Hulko, 2009); raising awareness of the effects of dementia on those experiencing it and of those supporting a person with dementia amongst the wider population; and facilitating independence for people with dementia.


While there is no universal definition of a ‘dementia-friendly community’, it is widely accepted that such a community is one that has a physical environment and a social community conducive to the needs of a person with dementia. For instance, it uses appropriate signage, given in both word and picture format, and is designed using the latest assistive technology; providers of local services, such as leisure and retail services, are educated about the effects of dementia in order to provide appropriate levels of support; people with dementia have access to local groups and are facilitated to develop and maintain social networks; and there are a range of support services, such as home based support, readily available (Milton, 2012; Mitchell, 2012; Lakey, 2012). Alzheimer’s Australia’s Dementia Friendly Societies: The Way Forward report uses a definition of dementia-friendly proposed by Sam Davis and colleagues in 2009: “A cohesive system of support that recognizes the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way.” One of the features of this definition is that is prioritises the experiences of the person with dementia. As Milton (2011) argues, the voices of those with dementia and those who care for them should be “at the start and the heart of the process of creating dementia-friendly communities.” Thus the first step is to ask people with dementia and their caregivers what can be done on a community level to improve the quality of their daily lives, and then the next step is to create alliances that bring people and organizations together to implement these changes.(Tingley, 2013).

Examples of global initiatives The very first national Alzheimer plan was developed in France in 2001 by Girard, which included the implementation of a network of memory consultants, the introduction of day centres, and measures to improve the quality of care for people with cognitive impairments living in residential care facilities. In 2007 Alzheimer’s disease was declared a major national concern (Alzheimer Grande Cause Nationale). Since then, France has been carrying out numerous research projects examining genetic links and searching for an effective treatment (Guisset-Martinez, 2012). The Netherlands produced a four year National Dementia Programme between 2005 and 2008 in conjunction with the Ministry of Public Health, Welfare and Support and Alzheimer Nederland (Alzheimer Europe, 2014). This involved developing a network of regional care providers on a voluntary basis aimed at improving the quality of care for people with dementia and their families. This led to the national standard for dementia care being established in 2011, which encompasses all professional guidelines, best practices and evidence based intentions. In 2009 the UK government launched “Living Well with Dementia: A National Dementia Strategy”. This is a five year plan aimed at raising awareness of dementia; ensuring earlier diagnosis in order to offer more timely treatment options; and develop a range of services that meet the changing needs of the person with dementia and their family/support people. In December 2013 the UK also staged the International G8 Dementia Summit in London bringing world leaders and global experts


together to implement strategies to tackle the global issue of dementia, which includes plans to increase funding into human research with the ambitious aim of producing an effective treatment or cure for Alzheimer’s disease by 2025 (G8 UK). This will be led by academia and industry partnerships in Canada and France. Examples of localised projects In 2010 the Hogewey dementia village was developed on the outskirts of Amsterdam in the Netherlands (Henley, 2012), which was designed to accommodate the needs and lifestyle choices of individual residents. It comprises of 23 different care homes with up to seven residents and two care staff in each one, all situated within a secure village-like environment. Each care home has a unique design, aimed at meeting each resident’s particular taste. There is ample open space with walkways and boulevards, a cafe, movie theatre, restaurant, minimarket and hairdressing salon. While Hogewey presents as an ideal model as far as the future of dementia care facilities is concerned, it could be argued that by developing stand alone, gated villages we are, in fact, in danger of further marginalising and stigmatising people with dementia. Such a model potentially removes people living with dementia from the wider community and limits opportunities for the wider community to interact with people living with dementia, especially those with severe dementia. However, it is commendable that Hogewey was developed after consultation with people with dementia and their support people, with safety being a key element. Life Care in South Australia have coupled up with the Do-It-Yourself retail chain, Bunnings

Warehouse, to enable people living with young onset dementia to participate in a range of work activities, with the support of a “buddy” – a volunteer who has received training on how to support a person with dementia (Alzheimers Australia, 2012). An evaluation of this programme revealed that people living with dementia had improved self-esteem, increased mental alertness and were more interested in life in general. Furthermore, the programme has helped to raise awareness of dementia amongst staff and the wider community. South Korea has begun training thousands of people, including children, to become “dementia supporters” in order to recognize symptoms and care for people with dementia (Lee, 2010). The UK has also recently completed a pilot study aimed at educating school children about dementia (Saad, 2012), as well as leading the way in terms of dementia design. More and more emphasis is being placed on encouraging risk-taking as people living with dementia are increasingly voicing their wishes to continue engaging in, or embark on new meaningful activities that involve an element of risk. The UK charity ‘Dementia Adventure’ is among one of the first organisations to embrace this concept after a group of men all living with dementia voiced how they wanted to continue to enjoy sailing, therefore, they have been facilitated to do so with the support of specially trained personnel. Furthermore, Dementia Adventure recognises the importance of outdoor space for all people living with dementia and offers many


other activities, including woodland walks and nature holidays. Our findings so far reveal that there are some people living with dementia in Christchurch who would like to try horse riding, while others would like support to take up fishing once more. There are also numerous people who would like an opportunity to play golf or bowls at a pace that meets their current level of ability without feeling intimidated or as though they might be a burden to other players. New Zealand has many migrants, many of whom have chosen to live in this country because of its vast outdoor space and for an opportunity to engage in outdoor leisure activities. Therefore, it would appear appropriate for dementia care providers and other service providers to bear this in mind when considering how far their service meets the wants and needs of people living with dementia. New Zealand has made some headway in terms of dementia education for paid caregivers through the ‘Walking in Another’s Shoes’ programme (Gee, Scott and Croucher, 2013), which was established in 2008 in Christchurch as a means to improve communication between paid caregivers and people with dementia, both in care homes and in people’s own homes, and is currently expanding throughout the whole of New Zealand. Examples of coordinated initiatives While there is a heart-warming array of individuals, groups and businesses around the world creating dementia-friendly initiatives, there is also a role for leadership, coordination, and strategic planning at a

national and local level. This includes national charters that organisations and business can become signatories to. In the UK examples include the Dementia Action Alliance whereby organisations and businesses sign up to adhere to the principles of a dementia-friendly community by ensuring staff receive appropriate education and training in order to offer a more supportive service to people living with dementia (Innovations in Dementia, 2011), with the Hampshire Dementia-Friendly Toolkit which includes a checklist for the principles of good dementia-friendly community design, e.g. appropriate signage, lighting, seating, flooring and navigation; the dementia friendly financial services charter (Alzheimers Society UK, 2013b), and the dementia friendly communities recognition process (Alzheimers Society UK, 2013c). Recognised dementia friendly organisations can display the relevant symbol, such as a forget-me-not in the UK, a purple angel in the US, or a handkerchief with knots in Bruges. It also includes initiatives with local government leadership such as those of Stirling in Scotland which has adopted the “Stirling the real dementia friendly city” as a corporate vision for 2013-2016 (Stirling Council, 2013), or Bruges in Belgium which has a 5 year action plan called “Together for a dementia friendly Bruges” (cited in Alzheimer’s Australia, 2013) Making Christchurch, New Zealand, dementia-friendly Between 2010 and 2011 the city of Christchurch suffered three major earthquakes resulting in extensive damage and the need for a complete rebuild of the Central Business District (CBD) and local community centres.


After the devastating earthquakes Christchurch is in a unique position to engage with designing for dementia-friendly communities as part of its rebuild process. As the recovery Strategy points out

creating a culture of interdependency for people with dementia whereby they are included and valued as essential contributors to the development of strong, diverse communities.

“ Recovery is inherently future focused and there will be opportunities to “build back better” when repairing damage done by the earthquakes.”

The positive focus of Appreciative Inquiry helps reduce the risk of inciting feelings of despair and hopelessness. This is of particular importance given the brief interactions between researcher and participant (Pratt, 2002).

The need to rebuild can indeed be seen as opening opportunities to be amongst the first specifically designed, appropriately serviced and empowering dementia friendly communities in the world. An essential first step in this process is to gather the views of Christchurch people living with dementia. A team of researchers from Canterbury District Health Board led by Karen Smith are undertaking a study to seek the perspectives of people with dementia. The aim of the present project is to gather insights from Christchurch people living with dementia about what would make it possible for them to live better in their community, and to distil this local advice to those who can make a difference in a series of user-friendly ‘toolkits’.

The Developing a DementiaFriendly Christchurch Study The study incorporates a qualitative design using methods of life history narrative and a semi-structured interview using an appreciative inquiry approach. Both of these methods involve actively listening to the views of people, which Crampton, Dean and Eley (2012) suggest is the underlying premise of the work of the Joseph Rowntree Foundation’s ‘York Dementia Without Walls’ project (2012), an initiative in the UK aimed at

In addition, appreciative inquiry can be used when interviewing people in the later stages of their dementia as it does not require detailed responses and much can be learned from non-verbal exchanges (Gill, White and Cameron, 2011). Each interview takes place in the participants’ own home unless a request for an alternative location is requested. Cantley (2001) suggests a number of reasons for this, such as people with cognitive impairments usually function best in familiar surroundings; they can easily comment on their immediate surroundings, which will be a useful criteria given the type of information sought for my study; they may need the aid of stimulus materials to offer their perspective; and support people, be they family care givers or care home staff, may feel the need to be present to aid discussion. This view is shared by McKillop and Wilkinson (2004). Recent research by Crampton, Dean and Eley (2012) and Keady et al (2012) suggest that memory walks that involve a person with dementia participating in a walking interview around their community enables them to respond to more community-specific visual cues, which may give rise to further wishes


and aspirations for future community development. This approach was deemed inappropriate for some people with dementia living in Christchurch at the current time given the significant impact following the earthquakes of 2010/11 resulting in the loss of numerous landmarks and historical buildings. Such an approach might give rise to unanticipated grief, distress and further confusion under the circumstances. Future phases of the research might be able to utilise this approach with selected participants. The Developing Dementia-Friendly Christchurch sample will consist of 24 - 36 participants, and will include individuals with mild, moderate and severe dementia. The effort to include people with a range of severity of progression of dementia, and those who live in care facilities as well as those who live in their own homes, is a particular strength of this study. Previous studies into the development of dementia friendly societies, including Wolverhampton City Council’s (2013) bid to become the first dementia friendly city in the UK, the Innovations in Dementia (2011) study in Ireland, and the New South Wales initiative in Australia (2011), did not seek the perspectives of people with severe dementia. Furthermore, they recruited participants into their studies via focus groups, which may prevent those who are less comfortable in the public arena from voicing their opinions (Bamford and Bruce, 2011; Morgan and Kreuger, 2009). Sherratt, Soteriou and Evans (2007) found that many people with dementia living in care homes were often denied the opportunity to participate in research as staff acting as gatekeepers deemed them to be disinterested

in research. Pratt (2002) argues that gatekeepers have a valid, protective role and should be regarded as a vital resource to the research process. Personal experience suggests there also appears to be an assumption that people with dementia have little to contribute or are unable to express an opinion. Yet, if we adopt the notion that all behaviour is communication then we should be offering people living with dementia in care homes the opportunity to express their opinions in whatever way they can. Swain, Heyman and Gillman (1998) and Dewing (2002) state that just as people with dementia have a right to privacy they also have a right to be heard. At the time of writing, three participants who are all living in a care home and have severe dementia have participated in the study, with all of them having made some highly valuable contributions to the research with the support of a family member. Thematic coding analysis will be used inductively to identify themes emerging during each interview and coded accordingly (Robson, 2011) e.g. experiences, expectations, dreams, or wishes for a dementia friendly community, and identified areas where support can be strengthened such as leisure, retail, transport services, or support networks. Our findings will be presented in user-friendly reports that will integrate an international literature review with themes and extracts from the Developing a Dementia Friendly Christchurch study and make specific recommendations for those involved in the design and rebuild of Christchurch City. These will be shared and promoted through the


alliances formed for the research including Alzheimer’s Canterbury, CERA (The Christchurch Earthquake Recovery Authority), and the Christchurch City Council.

Conclusion The notion of a dementia-friendly community strives to maximise the well-being of a person living with dementia by designing and developing environments that aid independence; provides services whereby staff have received appropriate training on how to best support a person living with dementia; has adequate transport to enable people to continue being a part of their community; and offers meaningful activities conducive to both past pleasures as well as encouraging new opportunities and risktaking. With so many recent developments in dementia design and assistive technology Christchurch currently has the ability to embrace these as part of its post earthquakes rebuild and even potentially be the very first designed and built dementia-friendly city in the world. However, it is imperative that the opinions of those living with dementia are sought before any developments take place as nobody understands the full implications of this disease quite like someone who is living with it. This should include the thoughts and feelings of those with severe dementia living in care facilities, who are often deemed incapable of expressing their opinions. This is a unique opportunity for Christchurch but one that can be lost – as decisions are being made and plans are being drawn, will they be embracing the best of dementia friendly and disability friendly design or could

they be unintentionally creating barriers that will remain with us for decades to come? In a Christchurch which is anything but dementia-friendly post-earthquake there is a chance to make a positive difference. This project is one step in learning from people living with dementia in order to turn these needs into action to create a dementiafriendly Christchurch.

References Alzheimer’s Australia New South Wales. (2011). Building dementia and age friendly neighbourhoods. Retrieved March 1, 2014, from http://www.fightdementia.org.au/commo n/files/NSW/20110803-NSW-PUBDementiaFriendlyNeighbourhoods.pdf Alzheimer’s Australia. (2013). Dementia friendly societies: The way forward. Retrieved January 6, 2014, from http://www.fightdementia.org.au/commo n/files/NAT/Paper_31_web.pdf Alzheimer Europe. (2014). National Dementia Strategies (diagnosis, treatment and research). Retrieved January 7, 2014, from http://www.alzheimer-europe.org/Policyin-Practice2/Countrycomparisons/National-DementiaStrategies-diagnosis-treatment-andresearch Alzheimers New Zealand. (2011). National Dementia Strategy. Retrieved March 1, 2013, from http://www.alzheimers.org.nz/aboutus/national-dementia-strategy Alzheimer’s Society UK. (2013a). Dementia 2013: The hidden voice of loneliness.


Retrieved April 25, 2013, from http://alzheimers.org.uk/site/scripts/dow nload_info.php?fileID=1677 Alzheimer’s Society UK. (2013b). Dementia friendly financial services. Retrieved Jan 7, 2014, from http://www.alzheimers.org.uk/dementiafr iendlyfinance Alzheimer’s Society UK. (2013b). Foundation criteria for the dementia-friendly communities recognition process. Retrieved Jan 7, 2014, from http://www.alzheimers.org.uk/site/scripts /documents_info.php?documentID=2136 Cantley, C. (2001), A handbook of dementia care. Berkshire, England: Open University Press. Crampton, J., Dean, J. &Eley, R. (2012). Creating a dementia-friendly York. Retrieved March 3, 2013, from http://www.jrf.org.uk/sites/files/jrf/deme ntia-communities-york-summary.pdf G8 UK. (2013). Global action against dementia. Retrieved March 1, 2014, from https://www.gov.uk/government/policies /improving-care-for-people-withdementia Gee, S., Scott, M., & Croucher, M. (2012). Walking in Another’s Shoes: Encouraging person-centred care through an experiential education programme. In Good Practice Publications. Wellington, NZ: Ako Aotearoa http://akoaotearoa.ac.nz/ako-hub/goodpractice-publication-grants-ebook/person-centred-care

Gill, L., White, L. & Cameron, I.D. (2011). Interaction in community-based aged healthcare: Perceptions of people with dementia, Dementia, 10 (4), 539-554. Guisset-Martinez, M.J. (2012) Three Alzheimer plans in France (2008-2012). In A. Innes, F. Kelly, and L. McCabe (Eds.), Key issues in evolving dementia care: international thery-based policy and practice (pp. 122-136). London,UK: Jessica Kingsley. Retrieved Jan 7, 2014, from http://www.alzheimereurope.org/policy-in-practice2/Countrycomparisons/National-DementiaStrategies-diagnosis-treatment-andresearch Henley, J. (2012). The village where people have dementia – and fun. Retrieved Janiuary 6, 2014, from http://www.theguardian.com/society/201 2/aug/27/dementia-village-residentshave-fun Hughes, J. (2012). Society should embrace people with dementia. Nursing Standard, 26(31), 26-27. Hulko, W. (2009). From ‘not a big deal’ to ‘hellish’: Experiences of older people with dementia. Journal of Aging Studies, 23, 131-144. Innovations in Dementia CIC. (2011). Retrieved May 2, 2013, from www.innovationsindementia.org.uk Jackson, J. (2012). This is: The Debenham Project. Retrieved April 30, 2013, from www.the-debenham-project.org.uk Keady, J., Campbell, S., Barnes, H., Ward, R., Li, X., Swarbrick, C., Burrow, S. & Elvish, R.


(2012). Neighbourhoods and dementia in the health and social care context: a realist review of the literature and implications for UK policy development, Reviews in Clinical Gerontology, 22 (2), 150-163. Lakey, L. (2012). Dementia Challenge, Practice Nursing, 23( 9), 432. Lee, S. (2010). South Korea’s ‘war on dementia’. Canadian Nursing Home, 21(4), 14-17. Lichtenberg, P.A., Cameron, M., Ensberg, M., Heidebrink, J., Horst, M., MunsonMcCorry, M. & Sumner, H. (2009). Doing More With Less: The Michigan Dementia Coalition. Journal of American Society on Aging, 33(1), 60-65. Manchester City Council. (2012). Manchester Age Friendly Strategy. Retrieved April 30, 2013, from http://www.manchester.gov.uk/downloa ds/file/11912/summary_manchester_a_gr eat_place_to_grow_older_2010-2020 McKillop, J. &Wilkinson, H. (2004), Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed, Dementia, 3 (2), 117-125. Milton, S. (2012). What makes a dementiafriendly community? The Journal of Dementia Care, 20(2), 12-13. Mitchell, L. (2012). Breaking New Ground: The Quest for Dementia Friendly Communities, Retrieved April 30, 2013, from www.housinglin.org.uk , accessed 30/04/2013

Pratt, R. (2011), Nobody’s ever asked how I felt. In H. Wilkinson (Ed.), The perspectives of people with dementia: Research methods and motivations (pp. 166-169). London, UK: Jessica Kingsley Publishers, Robson, C. (2011). Real world research: A resource for users of social research methods in applied settings. Cornwall, UK: Wiley. Saad, K. (2012), Prime Minister’s Challenge – Intergenerational School’s Project. Retrieved February 2, 2013, from http://www.worcester.ac.uk/discover/de mentia-prime-ministers-challengeintergenerational -schools-project.html Sherratt, C., Soteriou, C. & Evans, S. (2007). Ethical issues in social research involving people with dementia, Dementia, 6 (4), 463-479. Stirling Council (2013) Dementia Friendly Stirling. Retrieved Jan 7, 2014, from http://minutes.stirling.gov.uk/pdfs/scoun cil/Reports/SC20130228Item17DementiaF riendlyStirling.pdf Swain, J., Heyman, B. & Gillman, M. (1998). Public Research, private concerns: Ethical issues in the use of open-ended interviews with people who have learning difficulties, Disability and Society, 13(1), 21-36. Tingley, D. (2013). Memory cafes and the dementia friendly movement. Retrieved Jan 7, 2014, from http://memorycafecatalyst.org/blog/list/t ag/dementia+friendly Wallace, J. (2005), Living with dementia, Mental Health Today, April 2005, 14-15.


Wolverhampton City Council (2013), Community back’s city’s bid to become dementia friendly, Retrieved January 27, 2014, from http://www.bcpcnet.co.uk/content.asp?id=1523&cat=5&ni d=743

Author Karen Smith, Dementia Educator, Psychiatry of Old Age Academic Unit, Canterbury District Health Board, Christchurch.

Acknowledgements Thanks to Susan Gee and Matthew Croucher for their support of this project. Thanks to Tal Sharrock for her valuable contribution to the project as a summer student, Age Concern Canterbury for sponsoring the summer studentship, and all the participants who gave so generously of their time and insights.

Photo source P. 99: Anita Edridge for the Guardian (Margaretha Bos and her brother take a tour of Hogewey).


Come listen to me Using the TimeSlips method to improve quality of life and social identity Annabel Grant Telling a story is an activity we all frequently experience, as the storyteller, or as the listener. People with dementia retain the ability to tell their own stories, with increasing support required as their vocabulary and memory diminishes. They maintain the ability to be creative and fulfil the role of ‘storyteller’, given appropriate support. This chapter describes the experience of speech language therapy students in implementing a creative expression program called TimeSlips, in a residential home. A brief description of TimeSlips will be provided, as well as research on the program. Finally, the chapter will provide a more in-depth description of how dementia can affect communication.

Alzheimer’s dementia is the most prevalent cause of communication impairment in people over the age of 65, and many residential care facilities have a high proportion of people with dementia (Worrall & Hickson, 2003). Good communication is a very important aspect of quality of life, yet research on quality of life for people with communication disorders is scarce (Cruice, 2008). The residential care environment, in

comparison to home, can impact on how a communication disorder is experienced by a person with dementia. In residential care individuals with dementia have to adapt to communication partners who are unfamiliar, and who may also have communication problems. A large study (434 participants) of older people living in residential care facilities in Australia found 95% had at least one communication impairment (hearing,


cognition, language, voice, pragmatics) (Worrall, Hickson, & Dodd, 1993). The residential care environment has been described as socially barren (Burgio et al., 2001). Communication between staff and residents is often impoverished as talk is focused mainly on the caring task, or the person’s health (Lubinski, 1995). People with dementia are therefore more “vulnerable to being disempowered” than an individual living with family members (Lloyd, Gatherer, & Kalsy, 2006). In order to overcome some of these negatives people need opportunities to maintain social connections and exercise their communication skills. TimeSlips is a group storytelling activity which provides social and cognitive stimulation in a fun failure-free environment. People with communication problems due to dementia are the fastest growing clinical population assessed and treated by speech language therapists (Kinsella & Phillips, 2005). It is therefore important to ensure that speech language therapy students receive training that prepares them to deliver a high quality service to people with dementia. Since 2011, Massey University speech and language therapy (SLT) students have been gaining practical experience working with older adults residing at Aria Gardens Home and Hospital. Their input has ranged from providing education to caregivers on communication disorders and swallowing, to working on speech with individuals with Parkinson’s disease or after a stroke, and working with individuals with dementia one-to-one or in small groups. The TimeSlips program has been used since 2012, after the clinical educator completed the online training. This creative group storytelling activity is used with people with moderate-late stage dementia, who

become the storytellers. The activity provides a failure-free environment for communication, which supports feelings of self-worth and encourages social connectedness. “TimeSlips opens storytelling to everyone by replacing the pressure to remember with the freedom to imagine”(TimeSlips, N.D) . All contributions to the story are valued and acknowledged, which promotes social confidence and a positive psychosocial environment integral to person centred care. The activity aligns favourably with Tom Kitwood’s descriptions of “positive person work” in that storytellers are recognised and welcomed to the activity, and all their contributions are valued. The TimeSlips creative storytelling project was founded by Anne Davis Basting (2009). Any individual can complete the TimeSlips training, and scholarships are available for free training for family carers. The project shares stories and ideas about implementation via their website and facebook page. The TimeSlips sessions at Aria Gardens were usually run by 3 speech language therapy students (1 scribe, 2 facilitators). Sessions were run weekly, in the residents’ lounge and the storytelling usually lasted between 30-45 minutes. All storytellers were given a printed copy of last week’s story which was read out by the student facilitating. Then each person was given a copy of a new photo, and the facilitator asked open ended questions to elicit a story. The photos were usually of a playful or amusing nature, for example a dog wearing a cape, or a woman dancing to the band. The scribe recorded all the contributions on a large whiteboard and the story gradually developed. The story was read out periodically as it evolved to keep the focus


and enthusiasm going. A failure-free environment means that there is no such thing as the right answer to the prompts and questions. The most recent speech language therapy students to use TimeSlips made the following comments. “I really enjoyed TimeSlips and learning about the concept behind it. Implementing it helped me view our clients as people, not so much people with dementia”. This comment aligns with Tom Kitwood’s idea of the view being a PERSON with dementia, rather than a person with DEMENTIA (Kitwood, 1997). The student added “I think it's great how it is implemented in a group as participants feed off each other and keep the momentum going. The main benefits are that anybody can contribute, individual feedback is acknowledged and the outcome is a group effort. Drawbacks may be if participants ask repetitive questions or get fixated on one part of the story or the picture, as this can also distract others in the group”. Another student commented “My feelings towards people with dementia changed as the weeks we delivered TimeSlips progressed. I saw the creative side of individuals come out and the ability to enjoy themselves”. This fits with the philosophy of TimeSlips, in that people are given the title of storyteller and the opportunity to showcase the creative abilities they retain. One student said “I found the TimeSlips experience a really rewarding therapy approach. It allowed me insight into how to communicate with individuals with dementia and insight and perceptions into the versatile role of an SLT and the many different service deliveries we can provide for this population”. The final student commented “My opinions of people with dementia have

changed. I feel that with the appropriate tools they have a lot more to share than meets the eye.” Problems with communication are among the first symptoms noted by caregivers, and are rated as more stressful than self-care problems (Bayles & Tomoeda, 1991). Deteriorating memory impacts negatively on the language skills of people with dementia, placing them at risk for social exclusion. In the early stages of the disease the person may often repeat themselves, and forget what they have heard or read (Hopper & Bayles, 2001). Conversation can become increasingly difficult as the person’s vocabulary shrinks, and their responses to questions become less relevant and less accurate (Orange & Purves, 1996). In the advanced stages of dementia of the Alzheimer’s type, discourse can lack coherence and become fragmented and tangential. There are a number of reasons why communication is especially important for people with dementia, including maintaining a sense of identity and the ability to reminisce, remaining an active participant in their own care, and the cognitive stimulation of interaction (Lubinski, 1991). This last factor may be particularly important, as social engagement is one factor being investigated as a possible prevention strategy for dementia (Middleton & Yaffe, 2009). Language production and processing are affected by Alzheimer’s (Caramelli, Mansur, & Nitrini, 1998). In the early stages word-finding problems are common (anomia), these become more pervasive as the disease progresses (Guendouzi & Müller, 2006). In the late stages anomia may cause the person to overuse empty or non-specific vocabulary (e.g. thing, stuff), leaving the listener


struggling to determine the topic (Ulatowska & Bond Chapman, 1991). Initial difficulties of staying on the topic may progress to forgetting the topic entirely (Hopper & Bayles, 2008). The language of the person with dementia may contain less information and frequent digressions from the topic (tangentiality). Impaired discourse abilities were shown in a 1992 study that compared 10 people with mild dementia to healthy older people used as controls completing discourse tasks. For participants with dementia, 58 percent of their utterances were neither essential nor elaborative, compared to 25 percent of utterances for the controls. Participants with dementia included more irrelevant information, and less information overall (Cherney & Canter, 1993). Disruptions in coherence and cohesion have been described in the literature (Ulatowska & Bond Chapman, 1991). Coherent discourse has a unified theme and logical sequence, and cohesion is achieved by the use of linguistic devices which tie output together in structure and in meaning (e.g. conjunctions) (Ripich & Terrell, 1988). Dijkstra, Bourgeois, Allen, & Burgio demonstrated that residential care residents with moderate dementia used significantly less features to build discourse (e.g. elaborations on topic, information units) than healthy adults (2004). Decreases in extralinguistic functions (memory and attention) are primarily responsible for impaired language in mild to moderate Alzheimer’s dementia, and deficits in the semantic/conceptual system cause problems with naming and comprehension of words in the later stages (Kempler & Goral, 2008). Individual differences in language deterioration exist, and conversation partners need to do more to ensure communicative

success. Deteriorating communication can lead to social isolation and a decline in quality of life (Bourgeois & Hickey, 2007). Hence, speech language therapists have looked for ways to reduce the activity limitations or participation restrictions that result from declining communication skills. Strategies for improved communication with the person with dementia include only asking questions to which a ‘yes’ or ‘no’ response is required, or putting important information at the end of a sentence rather than the beginning (Whitworth, Perkins, & Lesser, 1999). Many individuals benefit from having a memory book to support as they tell their life stories. However, it is increasingly recognized that communication difficulties caused by dementia vary greatly between individuals. A useful tool for ideas and advice on communication problems can be found on the DemTalk website (www.demtalk.org.uk). There is some evidence that TimeSlips has a positive impact. TimeSlips improved the frequency of staff-resident interactions and the quality of engagement, even among those who didn’t take the training or participate in the sessions. Participating staff held more positive views toward people with dementia (Fritsch et al., 2009). Participants demonstrated increased expressions of pleasure and better communication skills (Phillips, Reid-Arndt, & Pak, 2010). Participation in TimeSlips with persons affected by dementia improved medical students’ attitudes toward this patient population, giving them a richer sense of the people involved (George, Stuckey, Dillon, & Whitehead, 2011). It is anticipated that the speech language therapy students will continue to use


TimeSlips as part of their undergraduate clinical training. In the pipeline is a collaboration with the Massey University Theatre Society, to enable students from other areas of study to learn about engaging with people with dementia. We are also interested in exploring intergenerational collaboration via interactions with local primary school children. A longer term goal is to increase community awareness of the strengths of storytellers in their present lives, demonstrating their humour, imagination and creativity, as a means to decrease the stigma which exists around dementia.

References Basting, A. D. (2009). TimeSlips Creative Storytelling Project. Forget Memory. Creating Better Lives for People with Dementia. Baltimore, MA: John Hopkins. Bayles, K. A., & Tomoeda, C. K. (1991). Caregiver report of prevalence and appearance order of linguistic symptoms in Alzheimer's patients. The Gerontologist, 31(2), 210-216. Bourgeois, M. S., & Hickey, E. (2007). Dementia. In D. R. Beukelman, K. L. Garrett & K. M. Yorkston (Eds.), Augmentative communication strategies for adults with acute or chronic medical condition (pp. 243–285). Baltimore, MD: Paul H. Brookes. Burgio, L. D., Allen-Burge, R., Roth, D. L., Bourgeois, M. S., Dijkstra, K., et al (2001). Come talk with me: Improving communication between nursing assistants and nursing home residents during care routines. The Gerontologist, 41(4), 449-460.

Caramelli, P., Mansur, L. L., & Nitrini, R. (1998). Language and communication disorders in dementia of the Alzheimer type. In B. Stemmer & H. A. Whitaker (Eds.), Handbook of Neurolinguistics (pp. 463-473). San Diego, CA: Elsevier. Cherney, L. R., & Canter, G. J. (1993). Informational content in the discourse of patients with probable Alzheimer’s disease and patients with right brain damage. Clinical Aphasiology, 21, 123134. Cruice, M. (2008). The contribution and impact of the International Classification of Functioning, Disability and Health on quality of life in communication disorders. International Journal of Speech-Language Pathology, 10(1-2), 38-49. Dijkstra, K., Bourgeois, M. S., Allen, R. S., & Burgio, L. D. (2004). Conversational coherence: Discourse analysis of older adults with and without dementia. Journal of Neurolinguistics, 17(4), 263-283. Fritsch, T., Kwak, J., Grant, S., Lang, J., Montgomery, R. R., & Basting, A. D. (2009). Impact of TimeSlips, a Creative Expression Intervention Program, on Nursing Home Residents with Dementia and their Caregivers. Gerontologist, 49(1), 117-127. George, D. R., Stuckey, H. L., Dillon, C. F., & Whitehead, M. M. (2011). Impact of participation in TimeSlips, a creative group-based storytelling program, on medical student attitudes toward persons with dementia: A qualitative study. The Gerontologist, 51(5), 699-703.


Guendouzi, J. A., & Müller, N. (2006). Approaches to discourse in dementia. Mahwah, N.J: Lawrence Erlbaum. Hopper, T., & Bayles, K. A. (2001). Management of neurogenic communication disorders associated with dementia. In R. Chapey (Ed.), Language intervention strategies in Aphasia and related neurogenic communication disorders (4th ed, pp. 829-846). Philadelphia, PA: Lippincott Williams and Wilkins. Hopper, T. & Bayles, K. A. (2008). Management of communication disorders associated with dementia. In R. Chapey (Ed.), Language intervention strategies in aphasia and related neurogenic communication disorders (5th ed, pp. 9981008). Philadelphia, PA: Wolters Kluwer Health. Kempler, D., & Goral, M. (2008). Language and dementia: Neuropsychological aspects. Annual Review of Applied Linguistics, 28, 73-90.

Lubinski, R. (1991). Environmental considerations for elderly patients. In R. Lubinski (Ed.), Dementia and communication (pp. 257-278). Philadelphia, PA: B.C Decker. Lubinski, R. (1995). State-of-the-art perspectives on communication in nursing homes. Topics in Language Disorders, 15(2), 1-19. Middleton, L. E., & Yaffe, K. (2009). Promising strategies for the prevention of dementia. Archives of Neurology, 66(10), 1210. Orange, J., & Purves, B. (1996). Conversational discourse and cognitive impairment: Implications for Alzheimer's disease. Journal of Speech Language Pathology and Audiology, 20, 139-139. Phillips, L. J., Reid-Arndt, S. A., & Pak, Y. (2010). Effects of a creative expression intervention on emotions, communication, and quality of life in persons with dementia. Nursing Research, 59(6), 417-425

Kinsella, K. G., & Phillips, D. R. (2005). Global aging: The challenge of success, Population Bulletin, 60, 1-40.

TimeSlips. (N.D). TimeSlips Creative Storytelling, from http://www.timeslips.org/

Kitwood, T. M. (1997). Dementia reconsidered: the person comes first Buckingham, England: Open University Press.

Ulatowska, H. K., & Bond Chapman, S. (1991). Discourse Studies. In R. Lubinski, J. Orange, D. Henderson & N. Stecker (Eds.), Dementia and communication (pp. 115132). Philadelphia, PA: B.C Decker.

Lloyd, V., Gatherer, A., & Kalsy, S. (2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research, 16(10), 1386-1404.

Whitworth, A., Perkins, L., & Lesser, R. (1999). Communication in dementia care: a partnership approach. In T. Adams & C. Clarke (Eds.), Dementia Care: Developing Partnerships in Practice (pp. 121-143). London: Bailliere Tindall.


Worrall, L. E., Hickson, L., & Dodd, B. (1993). Screening for communication impairment in nursing homes and hostels. Australian Journal of Human Communication Disorders, 21(2), 53-64. Worrall, L. E., & Hickson, L. M. (2003). Communication disability in aging: From prevention to intervention. New York, NY: Thomson Delmar Learning.

Author Annabel Grant, Speech Language Therapist, Clinical educator, Albany campus, Massey University.

Photo source P. 109: stroke4carers.org



Blokes’ Club Facilitating a social club for men with younger-onset dementia Howard Vickridge Typical aged care services are not shaped to meet the needs of men with younger-onset dementia. In 2010, the Waikato District Hospital Board Memory Service and Enliven Waikato introduced Blokes’ Club. Blokes’ club involves a weekly get together with a shared evening meal for up to 10 ‘blokes’ with younger-onset dementia, with some group outings. The group is facilitated by two staff members. This chapter describes this successful initiative, highlighted with the reflections of one of the foundation group members.

Men with younger-onset dementias have said their post-diagnosis world is lacking male company; they are living under the watchful care of their wives at home, usually have female ‘minders’, miss their workmates, and pine for relaxed male conversations. Typical aged care services are not shaped to meet their needs because these men are considerably younger and it is specifically brain disease rather than age that brings them together.

In Hamilton, New Zealand, in 2009, there were no respite or social groups specifically for people with younger-onset dementias. Respite was offered to some through existing day programmes for the aged, or as day visitors at some secure dementia facilities. Neither was particularly appropriate for younger people with dementia who were living at home. The Waikato District Hospital Board Memory Service proposed a pilot project as a special extension of an existing day programme at Enliven Waikato, a branch of Presbyterian Support Northern.


Late in 2010 The Blokes’ Club was formed. It meets each Thursday from 3.30 to 7.30pm at the Enliven Waikato ‘clubrooms’ (a day programme facility), and includes sharing an evening meal. Every six weeks or so, the club will have a special outing like visiting a museum, fire station, having a picnic offsite, or playing at a full-size bowling alley. These are activities shaped to provide reminiscence stimulus, provide opportunity for members to show off their expertise, or simply just to have fun as a group. “We’re not with our wives; we’re on our own which is a big thing. And the wives are away doing their thing but we’re also doing our thing, and that’s big, it’s good.” [All quotes are from foundation member Neil Timmo speaking in November 2013 about his experience of the club.] The blokes’ ages have ranged from early fifties to mid seventies. They are generally fitter and with less co-morbidity than the more aged. They have often been forced into early retirement, are facing an unexpected terminal illness, they can have (though may be losing) greater current family commitments and community roles than the elderly, they are adjusting their lifestyle to account for crucial lost earning years, losing financial controls, stopping driving, and dealing with all the feelings these circumstances generate. Those with insight, who appreciate their capacities are diminishing, express fears about losing or relinquishing control in their lives. The blokes see themselves as far from any twilight years. Membership criteria have evolved to guide both joining and leaving the Blokes’ Club. Because we do things like eating or walking as a group, practicality dictates that members

are able to autonomously walk and eat. A formal diagnosis is needed to become eligible for the respite funding that pays for the club to operate. Beyond that, mobility, communication skills, orientation to place, behavioural self-awareness and the desire to join the club act as filters so that no single member’s needs eclipse the wider group’s needs by monopolising staff attention. The club size is limited to 10 members and two staff. This provides a level of safety with a 1:5 ratio, and practicality in so far as the available van seats 12 people. Being a small group limits the likelihood of a member feeling socially overwhelmed. “There are ten of us, and there might be a couple or three conversations going at once, but we can communicate with each other. But if there’s more than ten it becomes sort of dominating and overcrowding, and we could separate and not as much would be said.” Neil. Since club members are experiencing degenerative disease and consequent progressive loss of facility, the blokes have tended to adapt to each others’ changes and give each other additional support as needed. For example, two members who have become increasingly aphasic (difficulty forming and speaking words and sentences) are able to stay connected within the club because the blokes, with supportive facilitation, practise patience in listening, suggest word substitutions, and use their past knowledge of the aphasic members to help keep them feeling involved, heard, and valued. However, sometimes a member’s symptoms become too disrupting for the other members. A past member with fronto-


temporal disease became increasingly belligerent about walking with the group. Instead, he would race off up front and head toward whatever destination he had in mind (usually his home or his past workplace). This meant one staffer needed to be with him the whole time (often away from the rest of the blokes) increasing the risks for the other staffer who was then alone with nine members. For another bloke, his similar disease process brought significant hallucinations that he would interact with. During one trip in the van he undid his seatbelt, leapt out of his seat and started punching the facilitator. Two other blokes intervened and the facilitator was able to talk the bloke down to a settled state. Later the bloke was able to explain how he had felt totally threated by the particular hallucination and was trying to stop it from attacking him. His embarrassment and apology to the club were met with hugs and voiced support from the other blokes. Fortunately, the club has never had to actively suggest a member leave. Just as the more disruptive symptoms changed the blokes’ functioning in the group, so their behaviours warranted greater support at home. Some of the blokes now visit past members who are in fulltime care, and at one care facility two past members asked to, and now share a room since they were friends. This illustrates an extended and significant personal benefit from the club building resilience and reducing social isolation. The benefits of the Blokes’ Club extend to their primary carers too. A number of the wives have formed a casual self-support network and often get together at one of their homes on a Thursday evening. They

offer each other practical help like hosting another’s bloke with their own to give one of them a day off, organising shared activities among the blokes (supporting new friendships that form at the club), and sharing knowledge of resources and services as they negotiate through a complex maze of health services. Another example of how important the club can become in the blokes’ lives was illustrated when a member died unexpectedly from meningitis. Five blokes and their wives attended the funeral and the family spoke of how much their bloke shaped his week around Thursdays. They then invited the whole club to visit his home as they packed his material life away, and invited us to each choose a useful memento from his toolshed. One of the blokes chose our friend’s fishing fly box and at the next club night used it to illustrate a biography and geography of our late friend’s fishing hobby. The Blokes’ Club objectives are formally described in a funding contract with the local public hospital board. In addition to providing respite for the member’s main carer, the club aims to reduce social isolation, provide a meaningful activities programme, maintain members’ functioning and independence, build resilience, and promote memberfocused decision-making. These objectives appear in many provider contracts for aged care and support, so have wide (and sometimes generic) application. The Blokes’ Club developed some guiding principles for our interactions; principles that point to the values and behaviours within our club environment which support the formal objectives: Respect each member’s autonomy


Respect members as adults Maximise each member’s self-power Reinforce each member’s life narrative Encourage an emotionally safe environment Apply evidence-based practices Support open disclosure by members Affirm trust between members Respect confidentiality within the club Consistent application of these principles establishes and maintains an environment where the blokes develop friendships with a spirit of mutuality, feel affirmed and uplifted by their interactions in the club, can discuss how they are managing some of their symptoms, can share feelings or thoughts that they may otherwise keep to themselves, and probably most importantly they can relax in a social space without anxiety about their social performance. “It’s different going to the Blokes’ Club because you’re talking with guys round about your same age and with the same problems, and [talking] about your problems, and this is quite good. Socially, conversation is very hard for us, and we just lean on each other a little at the club to get our conversations out, and then when we do go out socialising we can sort of…[laughs], well we can nearly hold our own, anyway.” Neil.

In the interests of maximising everyone’s selfpower (autonomy) the facilitation role is somewhat different from a typical supervisory role in dementia support groups. Language

within the club is deliberately shaped to reflect a non-hierarchical structure. Staff selfdefine as equal members of the club (albeit with formal responsibilities and accountability), so there is no ‘boss’ and no ‘them and us’. The facilitator and assistant have got to know the blokes and their families, their history, fears, aspirations and conversational repertoire. When we are in conversation, the staff will seed ideas, questions, or scenarios that will trigger a bloke to tell his story, share his joke, or have a chance to demonstrate his expertise. Members bring vast life experience to the group and by creating opportunities for them to tell of their experiences and knowledge, aspects of their identity – and many men anchor their identity in their work role – are affirmed and validated. By drawing on members’ wide and varied experiences our conversations can range, for example, from the mundane concerns of using a microwave to existential questions about the origins of life. Whatever the subject though, it will be relevant to one or more members. Within the membership, some blokes are in denial of any diagnosis, some have re-framed their diagnosis as being a ‘stroke’ or something similar, and others have good insight about their condition. When we discuss symptoms or treatments, the language used by staff is matched to each member’s beliefs about their condition. We have tended to use “neurological change” as a broad descriptor for the conditions members are experiencing. This avoids much of the labelling (and consequent stigmatising) and reduces the potential for any abrupt confrontation with an unwelcome diagnosis. However those with insight will at times speak openly of their diagnosis and symptoms,


which over time leads to others developing some insight, understanding, and acceptance of their particular condition. Wherever possible, the blokes will decide our activities by consensus. Because there is a degree of routine each week (gather and meet, have a cuppa and talk, go out for a walk or if raining an inside game, share a meal, play a game and/or sit around talking), it is easier for a bloke to make an appropriate suggestion of what we could do – it does not demand coming up with ever-new ideas. That said, a number of our outings have been made at a member’s suggestion; visiting a classic car museum, an arboretum, having a picnic at the lake, and going to a nearby hall to play indoor bowls. Showing how we play to each other’s strengths, a member who is a competitive bowler supervised the indoor bowling. He taught us what to do, and the protocols around ‘correct’ behaviour in a bowling tournament. And since he was no longer numerate, another of the blokes kept score. Blokes take turns at leading the way for our walks, two members are able to write up our 10-pin scores on a whiteboard, another has taught a newcomer how to throw darts. One of the aphasic members makes a particular point of bringing out meals and clearing the table – an arena of activity where he is contributing to the group and playing to his own strengths. Risk within the club is not eliminated, but is managed so that the blokes can experience some ‘texture’ in life (getting caught in a downpour, heading out for a walk without first deciding where to, finding our meals a bit over-heated and dry because we walked

longer than we intended) but always within safe parameters. Two areas of risk however stand out. The first is ‘creeping compensation’ that can happen when a member’s needs progressively get significantly greater than other members’. In the spirit of support and cohesion, there have been times when we have had to shorten walks because of one member’s declining mobility, or when one staff stays with the less mobile person while the other walks with the nine remaining members. Either way, the experience and safety of the entire group is compromised by one member’s needs. For a few weeks we had a new member who monopolised and dominated conversation (with a fair bit of spontaneous confabulation) to the exclusion of less confident members. The other club members, prompted by the facilitator, discussed the problem and devised a strategy of not responding to his assertions. The behaviour diminished. A second risk is placing unreasonable performative demands on any member. Two examples illustrate this; firstly when a member was being encouraged by the club assistant to draw something on the whiteboard. That member’s spacial perception and eye-hand coordination meant he could not, and he understandably became frustrated. A second was when the facilitator initiated a round-robin ‘tell us about yourself’ to help a new member get to know the group. For a member with aphasia, this unfairly put their incapacity in the spotlight. Where others had taken just a minute or two, this member took over 10 minutes. It was very affirming that the whole group listened patiently and voiced support as the member slowly got their information out. The blokes not only


cover for each other, but also covered for this slip-up by the facilitator. One of the most affirming aspects of the club is how the blokes provide effective therapy for each other. A member of about four months had framed his disease as a stroke, and believed himself to be in recovery. On hearing one of the others describe hallucinations that come on in the evening, the new bloke’s eyes welled up with tears as he told the group he had been experiencing this for the last two years but had kept it a complete secret for fear he was going mad. For that member, participation in the Blokes’ Club brought the insight that he was neither mad, nor alone in managing this symptom. In a similar vein, three members all described experiencing dual incontinence for several weeks following their diagnosis, and how it seemed to resolve without specific treatment. Only in an environment of trust and confidentiality could we expect this kind of disclosure. “It’s very good and everyone enjoys it, there wouldn’t be one of the blokes that doesn’t. The only problem is there’s not enough of them [Blokes’ Clubs]. For anyone with dementia, a Blokes’ Club is a great place to be.” The model developed by the Blokes’ Club over three years is proving successful, and in 2013 Enliven Waikato established a similar club for women with younger-onset dementias. We encourage readers to advocate for and consider developing services specifically for those with younger-onset dementias.

Author Howard Vickridge, Registered Nurse, Waikato District Health Board, Hamilton. Address correspondence to: Enliven Waikato Regional Manager, Rosemary Harris, email [email protected].

Photo source Howard Vickridge


National Dementia Cooperative NDC.HIIRC.ORG.NZ

sharing evidence, supporting action

sharing evidence, supporting action

Suggest Documents

Evidence to action and local action as evidence - cloudfront.net

Evidence to action and local action as evidence - cloudfront.net

sharing together - Evidence Exchange Network

sharing together - Evidence Exchange Network

Evidence Supporting Intralesional Stem Cell ... - Veterinary Evidence

From evidence to action

Physical evidence supporting a ribosomal

Supporting evidence and analysis - Wrap

Supporting evidence and analysis - Wrap

Supporting Voice Content Sharing among ... - Christian Remy

Supporting Instructional Designers: Sharing Our Stories and

Supporting Collaboration and Information Sharing ... - Semantic Scholar

Therapeutic Guidelines: Evidence into Action

From evidence into action - Gov.uk

From evidence into action - Gov.uk

Supporting Text 2 Experimental evidence supporting the ... - PLOS

Microdata Evidence on Rent-Sharing

Partisan Sharing: Facebook Evidence and Societal Consequences

Information-sharing and evidence base within ...

Delivering Safer Motherhood: Sharing the Evidence - Population ...

Sharing evidence on humanitarian relief - The BMJ

Observable and Unobservable Household Sharing Rules: Evidence ...

Supporting Teacher Learning Through Collaborative Action Research

Supporting Principled Humanitarian Action - Norwegian Refugee ...