Professional interaction in dementia care networks

Professional interaction in dementia care networks A toolkit for primary care professionals

Professional interaction in dementia care networks A toolkit for primary care professionals

Recommended reference: Stegge, C. aan de, N. Spruytte, B. Pianosi, J.S. Jukema, C.H.M. Smits (2016). Professional interaction in dementia care networks. A toolkit for primary care professionals. Zwolle: Windesheim University of Applied Sciences, ProMemo – Centre of Expertise for Dementia Professionals.

Colofon

Members of the Working Groups (care providers) Geriant, Netherlands: Paul-Jeroen Verkade, MSc, manager and 6 casemanagers: Yvonne Boon,

Project managers

Stefanie Eigenraam, Priscilla Eppenga, Linda van den Heuvel, Wendy Reuzenaar, Marian Totté.

• Jan S. Jukema, Ph.D., Researcher Innovation in Geriatric Care, Windesheim University of Applied Sciences.

• Carolien Smits, Ph.D., Associate Professor Innovation in Geriatric Care, Windesheim University of Applied Sciences.

Network DementiePlus Noord-West Veluwe, Netherlands: Ide Neumann, M.A., manager; Changuna Bijvank, quality assurance officer and 5 casemanagers: José Boon, Susan Captein, Sylvia Kuiper, Willy Overgoor, Marieke Roodink, Tea van der Veen.

Researchers

North East Community Care Access Centre in Huntington and North Bay, Canada:

• Cecile aan de Stegge, Ph.D., Innovation in Geriatric Care / Windesheim University

Robert Barnett, manager and 7 casemanagers: Nathalie Bureau, Jenniffer Cumming,

of Applied Sciences (Netherlands).

Kim Denomme, Kasey Lajeunesse, Joanne Peer, Tammy Winsor, Helena Zynger.

• Nele Spruytte, Ph.D., LUCAS / Centre for Care Research and Consultancy, University of Leuven (Belgium).

• Birgit Pianosi, Ph.D., Huntington University, Sudbury (Canada).

FOTON, Regional Centre of Expertise for Dementia and Family Care in West-Flanders, Bruges, Belgium: Bart Deltour, manager and 4 casemanagers: Hilde Delameillieure, Clarice de Cloedt, Claire Meire, Elke Poppe and professional Lieve Vermeulen.

Members of the Consortium • Prof. Chantal Van Audenhove, LUCAS (Centre for Care Research and Consultancy), University of Leuven, Belgium.

• Robert Barnett, North East Community Care Access Centre, Sudbury, Canada. • Corine van Maar, M.A., Vilans (Centre of Expertise for Long-term Care), Netherlands. • Ide Neumann, M.A. Netwerk DementiePlus Noord-West Veluwe (care provider), Netherlands. • Paul-Jeroen Verkade, M.A., Geriant (care provider), Netherlands. • Jurn Verschraegen, Flanders Centre of Expertise in Dementia, Belgium. • Helma Zijlstra, Verpleegkundigen & Verzorgenden Nederland (professional association of nurses), Netherlands.

Realisation Innovation in Geriatric Care / Windesheim university of applied sciences, in cooperation with members of the consortium.

Funds NRPO-SIA (National Taskforce Practice-Oriented Research SIA, formerly Stichting Innovatie Alliantie, project number 2011-3-11int, Netherlands), Windesheim University of Applied Sciences, Geriant, Network DementiePlus Noord-West-Veluwe, FOTON, NECCAC, University of Leuven, Huntington University.

Members of the Advisory Group (Netherlands)

Editor & translator

• Betty Freriks, LL.M., Alzheimer Netherlands, Network dementia IJssel-Vecht. • Henriëtte van Gils, Mezzo (association for support of informal caregivers). • Cindy Hobert, project manager OZOverbindzorg (virtual care home enabling digital

Paulien Rijkhoek, Piodoor.

contact between elderly, informal caregivers, professionals).

Design and layout Bataafsche Teeken Maatschappij, Rotterdam, Netherlands.

• Frans Hoogeveen, Ph.D., Associate Professor Psychogeriatrics, The Hague University of Applied Sciences.

• Coleta Platenkamp, M.A., www.patientervaringsverhalen.nl. • Theo Royers, M.A., Vilans (Centre of Expertise for Long-term Care). • Hilde de Vocht, Ph.D., Associate Professor Nursing: geriatric and palliative care & intimicy

© 2016 ProMemo - Centre of Expertise for Dementia Professionals | www.promemo.org No part of this publication may be changed in any way without previous written permission by the authors.

and sexuality, Saxion University of Applied Sciences.

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Preface Improving care and support for people with dementia is a major issue across the world. Care and support provided by professionals in primary care, like district nurses, nurse practitioners, case managers and other members of local support teams, require a great deal of expertise. Case managers in The Netherlands, Belgium and Canada joined forces to professionalize their jobs. Crucial to the daily support of people with dementia and their caregivers is the interaction between those who are involved. Since dementia leads to communication difficulties, the interaction will not always be fluent. This means that to improve care for people with dementia it is important to support professionals in enhancing their quality of interaction with clients and their respective networks.

International cooperation is both instructive and challenging. Professionals, researchers, students and managers worked together in systematically developing several tools that may improve the interaction between professional caregivers and people with dementia and those around them. This toolkit presents the results of this international cooperation, in a Dutch and an English issue. The toolkit consists of two parts. The first part concerns the complexity of the interaction between primary care professionals and people with dementia and their networks. This complexity is clarified in three examples of good practices. The second part presents a number of interaction tools, as a concrete aid for these professionals.

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Contents Preface 5 Contents 7 Introduction 8 Part I Communication model and good practices

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3. Reflection tools

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Tool 3.1

Reflection tool for interaction between

professional and client

Tool 3.2

Reflection tool for responding to resistance and

working with motivational interviewing

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Tool 3.3

Self-evaluation tool for motivational interviewing

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Good practice 1 An overburdened informal caregiver

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Appendix 73

Good practice 2 Dementia and physical problems

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Appendix 1

Accounting for the development

Good practice 3 Quality of life under pressure

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of this toolkit and the tools presented here 73

Part II Interaction tools

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Appendix 2

Essential literature and other sources of information 75

1. Contextual tools

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Tool 1.1 Ecogram

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Tool 1.2

Observation checklist of health literacy skills

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Tool 1.3

Deciding upon a particular interaction scenario

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Tool 1.4

Energy diary for informal caregivers

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2. Communication tools

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Tool 2.1

Communicating with people with dementia

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Tool 2.2

Interactive phone-calls

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Tool 2.3

Communication tips for informal caregivers

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Introduction People with dementia and those around them need professionals who support them over a longer period of time. The changes they are going through have an increasing impact on daily life. What used to be easy is not anymore, things do not work out the way they used to, or give rise to health and safety risks. Over time, people with dementia are increasingly dependent on care and support provided by others. Besides their own family and friends, these include professional caregivers as well. Primary care professionals like case managers, district nurses and nurse practitioners play an important part in the lives of people with dementia and their informal caregivers for a long time, even up to several years.

Core activities of primary care professionals What primary care professionals do exactly may differ from region to region and country to country. In any setting, however, their job is to enhance the quality of life of people with dementia and their care partners. Another characteristic is that they are crucial in coordinating different care and well fare services on the one hand, and offer personal psychosocial support on the other hand. Providing support to people with dementia is complex, and professionals need expertise and experience to face the various challenges. Providing good support is, determined by the quality of the interaction between the professional and the person with dementia and those around him/her. However, due to the effects of dementia this interaction is not always straightforward.

Interaction and dementia The interaction between people is multifaceted. Communication is taking place through language, movements of hands and arms, facial expressions and other non-verbal elements expressed by the body. Interaction is mutually responding to each other and exchanging information. This is often an unconscious process, and people mostly experience communication and interaction as straightforward. However, this changes for those who have dementia. Their articulation may change, they might not be able to find the right words, their facial expressions might change and so does their capacity to process information. Such changes give rise to emotions, like grief for what has been 8

lost, frustration, fatigue, anger, lack of understanding and fear of what is to come. Positive emotions may also arise, such as solidarity or gratitude, which are shared verbally but often also in non-verbal ways. All of this requires attention to other aspects of communication and finding new ways to interact with each other – that have to be adjusted over time during the entire process of dementia.

Skills of primary care professionals Professionals in primary care who support people with dementia are fundamentally aware that every situation is unique. Not one person is the same, and the impact of dementia on someone’s life also differs from one person to the next. These professionals can handle all those differences like no other. They are capable of behaving themselves appropriately and effectively in various circumstances, and a key aspect of this is adjusting one’s communi cation to every individual involved. The professionals respond appropriately and effectively to verbal and non-verbal expressions of everyone involved. Moreover, they know from experience and training how to enhance the quality of this interaction. Monitoring their own share in the interaction and reflecting on it, individually or with co-workers, significantly contributes to these improvements. This means that interaction tools and methods may support professionals in enhancing the quality of the interaction between themselves, people with dementia and those around them.

Interaction tools to support increasing quality Together with a group of primary care professionals who work as case managers in The Netherlands, Belgium and Canada, researchers aimed to develop several tools that support, ease or enhance interaction. The set of contextual, communication and reflection tools presented in this toolkit are the result of this research.

This toolkit presents: • A communication model for the practice of primary care, exemplified in three good practices of interaction between a professional, a person with dementia and the people close to him/her (Part I). • Examples of three kinds of interaction tools that enhance fruitful interaction between professionals, people with dementia and those around them (Part II): 1. Contextual tools 2. Communication tools 3. Reflection tools • An account of the development of this toolkit and the tools presented here (Appendix 1). • Essential literature and other sources of information (Appendix 2).

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Communication model and good practices

Part I Communication model and good practices

Part I

Part I

Communication model and good practices To be able to monitor and reflect on one’s own share in the interaction, it is useful for professionals to have a model of communication and interaction. A model offers a guideline for reflecting on one’s own behavior. De Haes and Bensing (2009) developed a communication model for medical settings. Further development of this model for primary care professionals who are responsible for supporting people with dementia led to the adjusted communication model presented in Table 1.

This model distinguishes six functions of professional communication: 1. To build trust in the relationship with a client and those who are close to him/her; 2. To gather information; 3. To transfer information; 4. To respond to emotions; 5. To arrive at collective decisions; 6. To enhance or decrease particular behavior that is related to illness and health. For each function of professional communication (1) a general goal is formulated, (2) the observable behavior of the professional is described and (3) a number of measurable mid-term goals are formulated.

Table 1. Six Functions Model for Communication by Primary Care Professionals and People with Dementia, issue 1.0 (cf. H. de Haes and J. Bensing (2009), 290).

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Function

General goal

Observable behavior / actions of the professional

Measurable mid-term goals for specific situations

To build trust in the relationship with a client and those who are close to him/her

There is a relationship of trust between the professional, the client and those who are close to him/her; based on this the professional is able to reinforce the emotional resources of the informal caregivers and enhance a positive, nonjudgmental way of dealing with the person with dementia.

• She acts sensitively in relation to the network; i.e. she enables the client and those who are close to him/her to be in charge of the situation, by not immediately coming up with her own solutions, but first getting a feeling of what the client would want, what they have tried, etc.; • She gains a thorough insight in the importance of the relationships in this network; • She arrives at an agreement on how frequent she will be in touch and in what way; • She has a nonjudgmental attitude towards the network.

• Client feels more autonomous and has a better quality of life; • Client and those who are close • to him/her are actively involved in how things are dealt with; • Client and those who are close to him/her trust the professional; • Client and those who are close to him/her feel more capable of listening to and enduring each other’s perspectives; • Informal caregivers express their own interests and use (respite) care facilities when needed; • The situation in general is more stable.

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Function

General goal


Measurable mid-term goals for specific situations • Informal caregivers are weighed down less by stress or burdens; • There are fewer crises that might cause an unvoluntary admission.

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To gather information

The professional can ‘monitor’ the network from a distance in an effective and positive way, by gaining sufficient information during home visits, concerning both the life and medical history of the client and his/her informal caregivers, and daily activities and developments in the context of this network.

• Through open questions and continued questioning she charts the physical, social and psychological functioning of the client; • She charts what the client prefers and what he/she is used to; • She charts relationships, needs and expectations and possibly hidden forces in the network and its functioning.

• The professional has as complete a picture of the situation of the client and those who are close to him/her as is possible; • The professional has an appro priate estimation of the resources of the client and those who are close to him/her; • There is a complete picture of the relationships in the network; • The professional looks for or gets signals from the network whenever there is something wrong.

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To transfer information

The client and those who are close to him/her are well aware of what dementia is and of what is available to everyone involved, in the way of care and welfare services and (medical, psycho logical and social) support.

• She knows when to tell what; • She arrives at an agreement with the client and those who are close to him/her about sharing information (with whom and how); • She responds to emotions that are triggered by her information; • She attunes her information quite well to what the client and those who are close to him/her are able to understand, checks their interpretation and need for support.

• All those involved have sufficient information or education, at a level they are able to comprehend, at a time that suits them and of a type that they are used to; • Those who need or wish for it get support in processing the information.

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Function

General goal



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To respond to emotions

The professional is capable of enhancing an affirmative, nonjudgmental way of dealing with the client and those who are close to him/her.

• She can recognize and acknowledge the feelings of the client and those who are close to him/her; • She can translate these feelings in a committed but neutral way, both from the client to the informal caregivers and the other way around; • She can enhance positive elements in a particular situation.

• The person with dementia feels he/she is acknowledged, seen and understood; • Those who are close to him/her feel they are acknowledged, seen and understood; • Everyone dares express his/her emotions; • Both the client and those who are close to him/her trust the professional to be committed to them.

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To arrive at collective decisions

Decisions that are made are not just based on information about how the client is functioning, but also on what the preferences and wishes are of both the client and those who are close to him/her.

• She plans a process of decision making and follows it; • She moves between the client’s point of view of the client and that of the other people involved; • She clarifies perspectives and interests; • She weighs the importance of having the client be in charge of his/her life to any safety issues involved; • Step by step she works towards a decision that is acknowledged by everyone involved.

• The client, those who are close to him/her and the professional have the same goal wherever possible; • There is mutual agreement about how to reach that goal; • Any risks involved in a higher level of autonomy for the client are explicitly recognized and shared with everyone involved.

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Function

General goal



To enhance or decrease particular behavior that is related to illness and health

The client and those who are close to him/her find a way of dealing with dementia that is acceptable to them, and are able to find a new way of life.

• She is able to motivate the client and those who are close to him/her to adopt new behavior (e.g. making use of daycare facilities), while being extremely careful to take into account what the network would prefer or reject; • She is able to discourage behavior that is undesirable or counterproductive.

• Advice that is acknowledged to be sound by everyone involved is followed; • The informal caregiver is satisfied about the quality of his/her own life and that of the person with dementia. • There are fewer crises.

Good practices The communication model for primary care professionals who work with people with dementia is illustrated below in three cases from actual practice. These can be considered as good practices that inspire professionals to learn how to respond to quite specific situations. A good practice has the following elements: • A case description • Interaction assignments for the professional • Communication function, actions and goals • Reflective questions for the professional The three good practices can be characterized as follows: 1. An overburdened informal caregiver 2. Dementia and physical problems 3. Quality of life under pressure

Good practice 1 An overburdened informal caregiver Case Today the case manager is visiting Mr and Mrs Langedijk. They have been living in a city of moderate size for over thirty years. The professional likes visiting them, she has been supporting Mr Langedijk for two years now and all three of them get along just fine. Bram Langedijk (73) has always been a hard-working and versatile plasterer. He lived on his own until he was 42, enjoying life with a group of friends with whom he went out to sail or fish. He never felt lonely. Then he met Mies (72), who was a widow of 41 with three children. She was full of life and there were sparks between them. Bram soon felt responsible for Mies and the children. She welcomed his care and the children were very fond of Bram. After years of living together they married. Their marriage is a happy one, and by now they have a flock of grandchildren. Eighteen months ago Bram was diagnosed with Alzheimer’s disease. He is depressed about this and uses medication, but unfortunately it causes tremors. He finds he cannot do the odd jobs he used to do around the house anymore. He selects the wrong tools or does not know in which order he should perform the individual actions. Working as a volunteer in a nature reserve he was recently declined the right to use an electric saw. However, just clearing away leaves is not that interesting to him. He feels useless, and is ashamed about it; and that is hard for him, because he does not like to talk about his feelings. Mies is constantly worried about Bram and in contrast, due to her work as a volunteer in an organisation aimed at giving people with physical disabilities a good time, she is very much used to talking about her own feelings and that of others. This regularly causes her to be confronted with Bram’s depression, and she is gradually becoming overburdened. Bram is growing rebellious because of her worries. The case manager is able to talk openly and honestly with everyone in this network; their daughters are often present at her home visits.

Interaction assignments for the primary care professional • To support Mies Langedijk, now that she notices that Bram Langedijk is gradually becoming more dependent on her, while he is also suffering from a depression. • To respond appropriately, as a professional, to Bram’s emotions. 17

Communication function, actions and goals Communication function and general goal

What can I do, as a professional, to reach the general goal?

What are specific goals?

1. To build trust in the relationship with this client and those who are close to him/her

• Do I make appropriate eye contact with all members of this network? • Do I adequately respond to their questions? Do I have enough information myself? • Do I respond actively to the daughters when they are present? • Can I answer their questions or do I promise to look up particular information for them? • Am I capable of maintaining an atmosphere of some lightness, for instance by using humor in the conversation? • Do I pose interested, open questions, and avoid questions starting with ‘why’? • Do I refrain from expressing judgments? • Do I express my understanding of Bram, Mies and their children, i.e. for all those involved? • Am I easily accessible by phone? • Do I follow the frequency of home visits I agreed to with Bram and Mies?

• Bram has activities during the day that are acceptable to him; • For Mies, her quality of life and her health is maintained; • Everyone in the network has an optimum quality of life; • Everyone in the network trusts me; • I can do my job in a pleasant way.

• Do I ask the members of the network how their visits to a physician and/or other professionals were? • Do I monitor when they are scheduled to pay the next visit, so that later on I can have them anticipate to this? • Do I get in touch with other professionals if necessary – and within the bounds of professional confidentiality – to gain extra information about his physical condition? • Do I discuss Bram’s care needs with him and the other members in the network? • Do I ask enough questions about the exact indications of Bram’s fatique (exhausted by the end of the day; inability to play Scrabble; inability to properly ride a bicycle)? • Do I inquire about his sleeping habits and sleeping pills? • Do I check continuously whether everyone still agrees on possible scenarios for respite care, admission; for now, for the near future as well as in the long run?

• My picture of the situation of Bram (including the resources of Mies and/or their daughters) is sufficient to define a feasible treatment plan, in order for everyone to maintain a reasonable quality of life; • I’m informed when something is wrong; • I can do my own job in a pleasant and efficient way.

General goal: There is a relationship of trust between the professional, the client and those who are close to him/her; based on this the professional is able to reinforce the emotional resources of the informal caregivers and enhance a positive, nonjudgmental way of dealing with the person with dementia. 2. To gather information General goal: The professional can ‘monitor’ the network from a distance in an effective and positive way, by gaining sufficient information during home visits, concerning both the life and medical history of the client and his/her informal caregivers, and daily activities and developments in the context of this network.

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Communication function and general goal



3. To transfer information

• Do I provide this network with enough information about medical issues and options for support, such as daycare? • Do I explain to them the consequences of the progression in dementia? • Do I clearly express that Bram’s functioning is deteriorating? • Do I check whether everyone understands the information I am providing them with?

• All those involved have access to sufficient information that they can understand, about dementia, depression, medication, daycare et cetera, in written form as well as on DVD or video; • All members of the network are at ease because they know what to expect; • With the information provided, members of the network can be as autonomous as possible.

• Do I adequately respond to Bram’s grief? • Do I express my understanding of and interest in what Mies and the daughters are worried about? • Do I keep asking questions often enough, until everything is clear? • Do I take Mies’ feelings seriously? • Do I make it clear to Bram that I understand his fear of stigmatization? • Is there anything I can compliment Bram on? • Do I empower Bram when he indicates he wants to take Mies into account? • Do I try to talk openly and on an equal footing with every person in this network (including the professionals), and to keep it that way?

• Bram, Mies and their daughters feel that I acknowledge, see and understand each of them individually.

• Do I ask the members of this network what alternatives they see, and what experiences they have with them? • Preceding each decision, do I give them a list of alternatives? • Do I ask them about the pros and cons they see? • Do I make it clear that Bram and Mies need not do anything for ME, but only what they themselves prefer? • Do I educate them about possible pros and cons of different alternatives in this particular situation? •

• All those involved have access to sufficient information that they can understand, about dementia, depression, medication, daycare et cetera, in written form as well as on DVD or video; • All members of the network are at ease because they know what to expect;

General goal: The client and those who are close to him/her are well aware of what dementia is and of what is available to everyone involved, in the way of care and welfare services and (medical, psychological and social) support.

4. To respond to emotions General goal: The professional is capable of enhancing an affirmative, nonjudgmental way of dealing with the client and those who are close to him/her.

5. To arrive at collective decisions General goal: Decisions that are made are not just based on information about how the client is functioning, but also on what the preferences and wishes are of both the client and those who are close to him/her.

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6. To enhance or decrease particular behavior General goal: The client and those who are close to him/her find a way of dealing with dementia that is acceptable to them, and are able to find a new way of life.



• Do I make sure that everyone involved is informed about daycare facilities in the area? • Do I ever compliment the daughters on their commitment? • What will I do when I doubt whether everyone agrees on the decision on activities for Bram, when I personally think it is an important decision? • Do I offer the network to help them find activities that suit Bram’s interests and skills, yet are not stigmatizing? • Do I evaluate the decision with Bram, Mies and their children?

• With the information provided, members of the network can be as autonomous as possible.

• Do I advise Bram that he might better go cycling together with someone else? • Do I anticipate in time on having Bram referred to a psychologist, because of his depression? • Dare I ask Bram to visit daycare facilities that I think would suit him? • Do I advise Mies and their daughters to join him during such visits? • Dare I confront Bram about the limitations of his wife’s resources?

• Bram is either not cycling, or cycling with a responsible adult; • Bram is visiting daycare at least one day a week, and tries to find a new hobby for an additional morning.

Reflective questions for the professional • Did I feel committed to the client? How did this contact make me feel? • Did I feel committed to the informal caregiver? How did this contact make me feel? • Is the client exhibiting behavior that seriously complicates informal care? • Do I think this is a complex case? Why? Can I talk about it to colleagues? • To what extent do past grievances influence the reactions of those involved? Can I deal with this myself, or should I refer to someone else? • Is everyone involved in this case healthy? How do they view their own wellbeing? • How would those involved value their quality of life? • Is everyone involved in this case properly informed about the next issue to decide on? 20

• Does everyone have enough information about dementia (in a form he/she can understand)? • Do Bram’s children take responsibility? Do they have their share in supporting him and is this well-balanced? • Do I pay enough attention to my own feelings about this case? Can I discuss them with colleagues? • Do I check regularly if my impression of those involved is correct? • How do I know whether I am right about my suspicions / impressions / emotional qualification of the mutual relationships between Bram, Mies and their children? • How do I know whether everyone involved in this case trusts me?


Good practice 2 Dementia and physical problems Case A case manager is paying a second visit to a couple that is relatively new to him. Teun and Femie H. (89 and 82, respectively) have been married for 60 years and are living in a city. Lately Teun (89) has been less and less active, as if he has not been able to push himself into action anymore. Just recently it appeared that all of a sudden he had lost a lot of weight, without there being any clear cause. Worried, the couple went to their general practitioner, who referred Teun to a hospital. Teun was subsequently screened during a weekday visit. To Femie’s horror, they were first told that Teun’s passive attitude was the result of “early-stage Alzheimer’s”, but that he also had an aneurysm in his abdomen; which basically meant that he could bleed to death at any time. After the hospital screening the couple was assigned to the healthcare organisation that the case manager is working for. The primary care professional devoted his first visit exclusively to taking care of the couple’s first emotional response. Today, in his second visit, he wants to get a picture of how Teun and Femie passed the last few weeks after all this horrible news. In addition, he wants to get a clear picture of the kind of support both of them need from him. In relation to this last question he primarily wants to know more about Teun. In what circumstances did he grow up and how does he cope with stress? As it turns out, Teun is rather down-to-earth. “When you are as old as we are, things start failing. And we can’t do anything about it anyway,” he says. Femie on the other hand would have preferred not knowing about the aneurysm, because now she feels Teun is carrying around a time bomb in his belly. Whenever he goes out for a walk or cycling she is anxious about him all the time, and it is difficult for her to stop feeling that way.

Interaction assignments for the primary care professional • To find out how Teun is doing; to get a better picture of how much weight he is losing and what consequences of dementia he is dealing with. • To gain as much information as possible about the diverging coping styles of Teun and Femie; how do they deal with stress? • To get a clear picture of what kind of support Femie needs, in order for her to keep functioning as informal caregiver and stay healthy herself. 21





• How and when can I refer to my first visit with Teun and Femie? Is there an element I should not forget? • What is the best way to refer to Teun’s hospital visit at this point in time? • Which open questions can I ask? • Do I realize I had better avoid questions starting with ‘why’ – as they are often perceived as threatening? • Do I try to follow up on what I’m told, without expressing any judgment? • Do tell them they can reach me later on, if they have any additional questions? • Do I agree on a frequency for visits with Teun and Femie, or do I leave it to them to invite me? • Do I have questions about his dementia in particular, or about his physical condition? • Are their children and my colleagues accessible to them? • Do I need other practitioners in order to gain all necessary information? What is my impression of Femie? Is she pulling back, or is she stimulating Teun to participate in activities they can do together? • Am I capable of expressing appropriate sympathy for Femie’s fears?

• Teun stays in the city, follows advice and takes the prescribed medication; • Femie can cope with supporting him and stays healthy herself; • Their children respect their choices; • Teun and Femie’s quality of life is good; • The network members trust me; • The sense that they are going through a crisis is less urgent.

• Does Teun feel he is appropriately supported by the advice given / measures taken in hospital? • How do I find out to what degree Teun and Femie are frightened? How did they process the bad things together? • Do I know what their daily habits are, and if not, do I know how to find out about them? • Do I know enough about Teun’s childhood to coach him adequately through this last stage of his life? How did he cope with bad luck up to now? • Do I know for how long Femie has been suspecting that Teun has Alzheimer’s disease? What did she notice?

• As a professional I have a picture of Teun’s situation (including the desired involvement of Femie) that is sufficiently clear for me to write a feasible plan of action.

General goal: There is a relationship of trust between the professional, the client and those who are close to him/her; based on this the professional is able to reinforce the emotional resources of the informal caregivers and enhance a positive, nonjudgmental way of dealing with the person with dementia.

2. To gather information General goal: The professional can ‘monitor’ the network from a distance in an effective and positive way, by gaining sufficient information during home visits, concerning both the life and medical history of the client and his/her informal caregivers, and daily activities and developments in the context of this network. 22




3. To transfer information

• What information should I give Teun to help him stay as healthy as possible physically? • What information about dementia do Femie and Teun need to be able to slow down the process? What can he do about this himself? • Am I capable of sensing / estimating how much information about dementia they can process at this point in time? • Do I know how to stimulate them to handle living together, now that one of them is suddenly deteriorating so rapidly? • How do I find out what they want to know first? • Can I anticipate which decisions have to be made in the future?

• All those involved have access to sufficient information that is relevant to them and that they can understand, about dementia, depression, medication, daycare, et cetera, in written form as well as on DVD or video.

• Am I capable of expressing understanding for their fears? How do I show this understanding? • Am I interested in the most important events in the couple’s life? • Do I understand that Teun was very fond of his mother? Can I use that element in my support? • Is there anything I can compliment Teun on, so that he feels proud of himself? • Can I help lighten Femie’s mood, for instance by complimenting her on something?

• Teun, Femie and their children feel that I acknowledge, see and understand each of them individually.

• Do I remember to check quite carefully, time and time again, if I understand each of them correctly? • With respect to decisions that have to be made in the future, do I know how to plan them in time and at proper intervals? • Do I take enough time to ask questions and get a thorough picture of each person’s perspective on the issue? • Dare I express confidence when that is called for, based on my expertise as a professional?

• Teun notices that I correctly understood he does not like playing games, and education for the elderly; • It is clear that I will only look for daycare activities that suit Teun’s preferences; • I know whether Femie is at peace with the fact that she has to do more things on her own.

General goal: The client and those who are close to him/her are well aware of what dementia is and of what is available to everyone involved, in the way of care and welfare services and (medical, psychological and social) support. 4. To respond to emotions General goal: The professional is capable of enhancing an affirmative, nonjudgmental way of dealing with the client and those who are close to him/her.

5. To arrive at collective decisions General goal: Decisions that are made are not just based on information about how the client is functioning, but also on what the preferences and wishes are of both the client and those who are close to him/her.

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6. To enhance or decrease particular behavior

• Do I have a set of specific recommendations in mind that I could give them? • Can I motivate them to follow such advice? How? • Can I transfer my knowledge of how to slow down or prevent dementia in a playful way? • Can I effectively stimulate Femie to stay involved in her own activities? • Do I show them that I try to be accessible to them in any way? • Do I show them they can come to me for information about anything?

• Teun is taking the extra nutrition properly; • Teun knows about his diseases and acts accordingly; • He doesn’t do anything dangerous; • He accepts that he needs to rest more; • He does not unnecessarily worry his wife and will not ‘wander around’; • Femie stays involved in her own activities.

General goal: The client and those who are close to him/her find a way of dealing with dementia that is acceptable to them, and are able to find a new way of life.

Reflective questions for the professional • Did I feel committed to the client? How did this contact make me feel? • Did I feel committed to the informal caregiver? How did this contact make me feel? • Was Teun exhibiting behavior that seriously complicates informal care? • Do I think this is a complex case? Why? Can I talk about it to colleagues? • To what extent do past grievances influence the reactions of those involved? Can I deal with this myself, or should I refer to someone else? • Is everyone involved in this case healthy? • Is everyone involved in this case properly informed about the next issue to decide on? • Does everyone have enough information about dementia (in a form he/she can understand)?

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• Do Teun’s children take responsibility? Do they have their share in supporting him and is this well-balanced? • Do I pay enough attention to my own feelings about this case? Can I discuss them with colleagues? • Do I check regularly if my impression of those involved is correct? • How do I know whether I am right about my suspicions / impressions / emotional qualification of the mutual relationships between Teun, Femie and their children? • How do I know whether everyone involved trusts me?


Good practice 3 Quality of life under pressure Case Anneke (almost 78) is suffering from early-stage dementia combined with a depression. Since eighteen months she has been supported by a case manager. For a long time, she wandered around in a large city in The Netherlands without a permanent home, and in those years she developed a strong need for autonomy. However, the question is whether she is still capable of coping with it now. Her sister, Mrs Visser (72), is very worried about this, because Anneke is quite careless with her medication, has an unsocial day-/night rhythm and regularly ‘threatens’ to take her own life. In addition, Anneke has ample talent in giving other people (including her sister) the feeling she needs to be ‘rescued’. For this reason, the case manager regularly visits Anneke’s sister, Mrs Visser. She was a nurse, was widowed nineteen years ago and shortly after moved from P. to E. where she has lived since then. Five years ago she went through a major surgery, when a malignant tumor was removed from her intestines and a subsequent bacterial infection made her gravely ill. Fortunately, she had always loved sports and her physical condition was good. During that time, she also learned how to relax, so lately she is feeling much better. Eighteen months ago Anneke confronted her with the news that she would move to E. as well. And since then, Mrs Visser has been trying to ‘rescue’ Anneke. The case manager suspects that Anneke feeds a sense of guilt into her sister (in the past there was some disaster in or near Mrs Visser’s home, which caused Anneke to suffer a loss). Anneke has two children: a son with whom she wants no contact, and a daughter who lives in Germany. The daughter is only occasionally involved in her mother’s treatment (mostly by phone), but legally she is the main contact for the case manager.

Interaction assignments for the primary care professional • To position oneself in the contacts with Anneke, her daughter and Mrs Visser in such a way, that Anneke can continue living in E. with as much autonomy as possible. • Get a picture of what kinds of support Mrs Visser needs (from the primary care professional as well) in order for her to play her part as informal care giver while staying healthy herself. 25





• When do I tell them that I am a ‘case manager’, right away or later? • Do Anneke and Mrs Visser respond positively to my supporting style, or do I feel resistance? What are the signs of resistance? • Do I want to give them my direct phone number or the general number of our organisation? • How do I get Anneke’s daughter actively involved in her mother’s treatment? Do I want to meet her in person or is contact by phone sufficient? • Do I think it is desirable that Mrs Visser takes care of Anneke? Can I keep my judgment to myself? • How deeply should I look into the relationship between the two sisters to be able to adequately support Anneke? • Am I capable of asking open questions? • Dare I respect Anneke’s autonomy to the degree that she is asking for? Am I supported in this by my team? • How often do I want to / can I / should I visit Anneke and visit Mrs Visser? • Do I promise to keep to a particular frequency, or is it better to pay visits only after being invited? • Do I respond openly, honestly and trustworthily to them? • Do I sufficiently reflect on my own actions?

• Anneke lives in her own home as long as possible; • Mrs Visser herself defines the extent to which she wants to take care of Anneke; • I have to act immediately less often, because those involved know which professional they should approach for which question; • I talk to Anneke and Mrs Visser about my part as a professional regularly. They are satisfied with my support and my interventions; • Anneke and Mrs Visser know when I will visit them at home.

• Whom do I contact for information about what support Anneke needs, her lifestyle and wishes? Just Anneke herself, her daughter, Mrs Visser, the professionals who help her with activities of daily living and housekeeping, the general practitioner? Do I have to ask Anneke’s permission first? • Do I gain her trust first, or do I discuss with colleagues which relevant diagnostic tests I need to arrange for, to get a clear picture of Anneke’s health? • Do I communicate the information I gather to all three people involved, and if yes, how? To each of them individually, or do I sit down with all three of them collectively? • As a professional in Anneke’s life, am I also responsible for the support needs of Mrs Visser?

• As a professional I have a picture of Anneke’s situation (including the desired involvement of her daughter and Mrs Visser) that is sufficiently clear for me to write a feasible plan of action, so that it is safe and secure for the client to live in her own home.

General goal: There is a relationship of trust between the professional, the client and those who are close to him/her; based on this the professional is able to reinforce the emotional resources of the informal caregivers and enhance a positive, nonjudgmental way of dealing with the person with dementia.

2. To gather information General goal: The professional can ‘monitor’ the network from a distance in an effective and positive way, by gaining sufficient information during home visits, concerning both the life and medical history of the client and his/her informal care givers, and daily activities and developments in the context of this network. 26




• Do I ask Anneke, her daughter and Mrs Visser what they expect of me? And do I intervene when Anneke does not agree with her daughter or her sister? • Do I ask what Mrs Visser can and wants to do for her sister? Do I ask Anneke whether she appreciates and wants to accept this? • Do I confront Mrs Visser with the fact that Anneke’s daughter is my legal contact and that she herself is not, even though she lives closer by? • Am I capable of stimulating Mrs Visser to support Anneke in practical ways rather than emotionally, for instance by helping her with her grocery shopping? 3. To transfer information General goal: The client and those who are close to him/her are well aware of what dementia is and of what is available to everyone involved, in the way of care and welfare services and (medical, psychological and social) support.

4. To respond to emotions General goal: The professional is capable of enhancing an affirmative, nonjudgmental way of dealing with the client and those who are close to him/her.

• How do I find out what information Anneke, her daughter and Mrs Visser need about dementia, depression, medication, daycare facilities, respite care, advanced care planning, et cetera? • Am I capable of sensing when each person is ready to receive which kind of information? • Do I know how to offer that information to each of them in a medium they can deal with and understand (oral or in writing, online, on DVD or video)? • Do they need extra support in processing that information? • Do they know how Anneke’s medication works, what its side-effects and dangers are? • Are there any issues they are afraid of (e.g. suicide by oxazepam), while I can take away those fears by educating them (e.g. oxazemap is not lethal)?

• Anneke, her daughter and Mrs Visser have access to sufficient information that they can understand, about dementia, depression, medication, daycare, et cetera, in written form as well as on DVD or video, or online (depending on their skills).

• Am I capable of taking Anneke’s feelings seriously, and of responding to them in a meaningful way? • Am I capable of taking the feelings of Anneke’s daughter seriously (and possibly her son’s as well), and of responding to them in a meaningful way? • Am I capable of taking the worries or fears of Mrs Visser seriously, and of responding to them in a meaningful way? • Am I capable of adequately responding to Mrs Visser’s own feelings? • Can I find something in Mrs Visser’s behavior that I can use to show her later on that she did learn how to behave herself differently, so that I can compliment her on this?

• Anneke, her daughter and Mrs Visser feel supported by me.

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• Am I on speaking terms with everyone who is involved in this case (other professionals as well) and do I pay attention to how difficult this case might be for the home care professionals who support Anneke in activities of daily life and housekeeping? 5. To arrive at collective decisions General goal: Decisions that are made are not just based on information about how the client is functioning, but also on what the preferences and wishes are of both the client and those who are close to him/her.

6. To enhance or decrease particular behavior General goal: The client and those who are close to him/her find a way of dealing with dementia that is acceptable to them, and are able to find a new way of life.

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• Do I adhere to the philosophy of ‘self-management’ by the client? Why / why not? • Do I enable everyone who is involved as professional or informal caregiver to get to know and respect each other’s ideas about the situation (e.g. by way of a collective meeting)? • Do I sufficiently take everyone’s interests and emotions into consideration? • Do I make sure that everyone who is directly involved knows in time which decisions have to be made (and in which order)? • Do I make sure that there are not too many decisions to be made at the same time? • Did I explore all the alternatives previous to each far-reaching decision? • Am I able to find out what, in this specific situation, the pros and cons of various alternatives would be? • Am I prepared to experiment? • Do I make sure that every decision is made collectively, and in some cases (when a decision is very hard for a particular person) supported by an authority such as a specialist in geriatric care?

• Mrs Visser accepts that she is not qualified to decide on her sister’s medication; • All members of the network (from Anneke to the general practitioner) focus on the same goal and we agree on how to reach it.

• Am I capable of tactfully limiting Mrs Visser’s care activities for her sister, either in time (e.g. one day per week instead of all seven), or in the kind of action that she performs (e.g. buying groceries instead of ‘pushing Anneke to get out of bed’)? • Am I capable of tactfully advising Mrs Visser to find some distraction by engaging in something she likes to do herself? • Do I make sure that Anneke is tested neuropsychologically? • Do all professionals involved know which questions to answer themselves and when to refer to me?

• Anneke agrees to cooperate in a neuropsychological test; • Anneke is open to checking out a daycare facility; • Home care professionals have a uniform way of dealing with Anneke and Mrs Visser;




• Mrs Visser is able to limit her need to take care of her sister, and to be involved in a practical way that is useful for everyone involved.

Reflective questions for the professional • Did I feel committed to the client? How did this contact make me feel? • Did I feel committed to the informal caregiver? How did this contact make me feel? • Was Anneke exhibiting behavior that seriously complicates informal care? • Do I think this is a complex case? Why? Can I talk about it to colleagues? • To what extent do past grievances influence the reactions of those involved? Can I deal with this myself, or should I refer to someone else? • Is everyone involved in this case healthy? • Is everyone involved properly informed about the next issue to decide on? • Does everyone have enough information about dementia (in a form he/she can understand)?

• Do Anneke’s children take responsibility? Do they have their share in supporting him? • Do I pay enough attention to my own feelings about this case? Can I discuss them with colleagues? • Do I check regularly if my impressions of this case are correct? • How do I know whether I am right about my suspicions / impressions / emotional qualification of the mutual relationship between Anneke and Mrs Visser? • How do I know whether everyone involved in this case trusts me?

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Part II Deel II Interaction tools

Interaction tools

Deel II

Interaction tools Meaningful interaction is not straightforward, but requires that professionals have knowledge of and expertise in interaction skills. Developing those can be supported by ‘tools’ – helpful aids that professionals can incorporate into their work practice. Especially for students and entry-level professionals such tools are meaningful. And experienced professionals can use them to improve the quality of their interaction skills. Verbal and non-verbal communication of the person with dementia and the response of a professional is influenced by many factors. Not every client finds himself in the same situation. For a professional it makes a huge difference whether the person with dementia lives alone, or with a partner who is caring, or alternatively a partner who is rather absent. Another important issue is whether there are any children that are involved or not. And then there are many ways of interacting: by phone, by e-mail, in face-to-face discussions during home visits. Finally, there are several reasons why a professional might feel inclined to reflect (again) on his or her own actions.

For these reasons, the tools are arranged into three groups: 1. Contextual tools: focusing on external factors that co-determine the interaction 1.1. Ecogram 1.2. Observation checklist of health literacy skills 1.3. Deciding upon a particular interaction scenario 1.4. Energy diary for informal caregivers 2. Communication tools: meant to support communication between the professional, the person with dementia and those who are close to him/her 2.1. Communicating with people with dementia 2.2. Interactive phone-calls 2.3. Communication tips for informal caregivers 3. Reflection tools: meant to support the professional in enhancing the quality of the interaction 3.1. Reflection tool for interaction between professional and client 3.2. Reflection tool for responding to resistance and working with motivational interviewing 3.3. Self-evaluation tool for motivational interviewing The contextual tools, communication tools and reflection tools mentioned above are presented and explained in this second part of the toolkit for primary care professionals. Table 2 on the next page indicates for each interaction tool what its goals are.

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Table 2. Overview of three types of interaction tools

Type

Goal

1. Contextual tools 1.1 Ecogram

Identifying and strengthening the network

1.2 Observation checklist health literacy skills

Estimating the level of understanding in people with dementia and those who are close to him/her

1.3 Deciding upon a particular interaction scenario

Offering education / information at the right level

1.4 Energy diary for informal caregivers

Empowering informal caregivers

2. Communication tools 2.1 Communicating with people with dementia

Clarifying changes in communication to informal caregivers

2.2 Interactive phone-calls

Collecting information effectively

2.3 Communication tips for informal caregivers

Enabling informal caregivers to improve communication with the person with dementia

3. Reflection tools 3.1 Reflection on interaction

Becoming aware of one’s professional actions and discovering opportunities to improve them

3.2 Reflection on responding to resistance and motivational interviewing

Detecting resistance and becoming aware of one’s professional actions and opportunities to improve working with motivational interviewing

3.3 Self-evaluation motivational interviewing

Becoming aware of one’s development in working with motivational interviewing

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Interaction tools 1. Contextual tools 2. Communication tools 3. Reflection tools

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1. Contextual tools Tool 1.1 Ecogram Information about the social contacts and relationships of a person with dementia and his/her primary informal caregiver is essential to professionals. This knowledge can be documented in an Ecogram, a visual representation of the number, type and character of someone’s contacts and relationships. An Ecogram, but also constructing one together, provides insight into contacts that are willing and able to contribute to the emotional and/or practical support of the client. This support may strengthen the self-reliance of (the network around) the client.

An Ecogram: • helps the person with dementia and his/her informal caregiver(s) to chart existing and desired contacts and relationships, and the support they (can) offer; • supports the professional in discussing the size, character and support of the social network; • directs decision-making concerning concrete support that is necessary, and by whom it could be offered

Goal Clarifying the size and character of social relationships and contacts, and what they could (want to) contribute to the emotional or practical support of the person with dementia in his/her functioning from day to day. The kinds of support charted in an Ecogram relate to: • Sharing emotions – Keeping company – Moving / going out / enjoying sports together • Living – Doing odd jobs - Gardening • Taking care of oneself: Activities of Daily Living (ADLs) + Providing meals – Housekeeping activities – Use of aids – Being home alone or not • Coordinating professional care – Keeping track of sleeping patterns – Medical care and diagnosis – Questions about the end of life • Advice – Managing financial affairs – Legal guardianship

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Working with an Ecogram Preparation • During the first home visit take ample time to get to know the person and his/her informal caregivers. • Explain why you ask the network to fill in an Ecogram; clarify what purposes are served by an Ecogram. • Stress that caring for a person with dementia usually cannot be carried out by just one person. Instructions for use • Give the materials for an Ecogram to the network; as the person with dementia and his/her informal caregiver to fill in the Ecogram together (or participate in it yourself). • (during the next visit) Ask the person with dementia and/or the informal caregiver (how they handled filling it in and) what they think of the result. • Go through each of the relationships and/or functions in the Ecogram with both of them. • Ask which people are most important to the person with dementia or to the informal caregiver. • Check whether these people are actually all in the Ecogram and what function they (could) have. • Ask whether the network members expect that certain relations might drop out in the near future, or which ones might become more important. • Return during other home visits to the Ecogram and any changes in it; make it into a regular issue to discuss.

More information • Brink, Cora, Anouk Poll en Petra van Leeuwen (2013). Quez, vragen naar zelfregie. Utrecht: Movisie, 2013.

• Herman, S. (2009). Het Ecogram. Sociale Netwerken in kaart gebracht. Leuven: Politeia. • Kruijswijk, Wilco, Mieke van der Veer, Cora Brink, Willy Calis, Jan Willem van de Maat en Inge Redeker (2014). Aan de Slag met Sociale Netwerken. Utrecht: MOVISIE-Vilans-Actiz.

• Scheffers, M. (2010). Sterk met een vitaal netwerk. Empowerment met de sociale netwerkmethodiek. Bussum: Coutinho.

• Smit, B. en van Gennep, A. (2008). Werken aan sociale relaties. Praktijk en theorie. Utrecht: Vilans. • Steyaert, J. & Kwekkeboom, R. (2012). De zorgkracht van sociale netwerken. Utrecht: MOVISIE.

The Ecogram

Subsequently give them a set of Post-it’s in different colours and a sheet of paper with the following questions:

After your first home visit, give the people in a network a large sheet of paper with several concentric circles. In the middle one – the smallest circle – you write down the name of the person with dementia. Attach the paper to a board, or tape it to a door or empty wall. Table 3. Important relations perform five different kinds of support or care activities

Kind of care or support that is offered by people in one’s social network

Colour of Post-it

Which people are important to you? • What people are you in touch with regularly? • With whom do you feel comfortable? • Which people support you? • To whom do you provide support yourself? Who is involved in your situation? • Who will notice when something changes in your situation? • In what ways are you in touch with other people? Through social media as well? • Are there any people you feel connected to, but with whom you are out of touch? • Do you want to change anything in the contacts you have?

Sharing emotions – Keeping company – Moving / going out / enjoying sports together

Pink

Living – Doing odd jobs - Gardening

Green

Taking care of oneself: Activities of Daily Living (ADLs) + Providing meals – Housekeeping activities – Use of aids – Being home alone or not

Yellow

Who would you like to involve in your situation? • Would you like to ask family and friends to support you? • Which professionals or volunteers are already involved? • In what way do you ask others to help you? • Would you like me to support you in getting others involved? If so, how?

Coordinating professional care – Keeping track of sleeping patterns – Medical care and diagnosis – Questions about the end of life

Blue

What would you like to ask of whom? • How do you plan to do this? • Who could help you with that?

Advice – Managing financial affairs – Legal guardianship

Orange

To answer the above questions, ask the people in the network to write the name of each person in the network on a Post-it in the colour that matches the kind of care or support he/she could offer (one name per Post-it). Subsequently they can stick all of the Post-it’s in the circles around the client’s name. Close to the middle and hence the person with dementia they should stick the Post-it’s with the names of those people they are in close contact with, and who do a lot of them; farther away or even very far from the centre the names of those people who are less involved. Regularly discuss the Ecogram; check whether there are any changes and what this means for the professional care that you and others provide. 37

Tool 1.2 Observation checklist of health literacy skills Case managers adjust their way of communicating with a person with dementia and (when present) the primary informal caregiver according to their ‘health literacy skills’. This is crucial to establishing and maintaining an optimum connection to the network. Health literacy skills can be divided into: • Functional skills (being able to read and/or write, sufficient understanding); • Communication skills (e.g. having sufficient language skills to look up information or, in case one doesn’t understand the information, to continue one’s search or ask a physician or other professionals); • Evaluation skills (also called critical skills; e.g. an evaluative and self-conscious attitude to health information, asking for a second opinion, evaluating and checking information about medication). For the professional to adjust the nature and contents of what she/he should communicate, it is crucial to know which health literacy skills are limited or readily available. • A lack of functional skills require him/her to keep information or education simple (only orally, or with more illustrations). In case the lack of functional skills is related to the language generally used, the professional is required to offer the necessary information in another language that is more appropriate; • A lack of communication or evaluation skills implies that the professional has to check continuously whether she/he is still in touch with the client and the informal caregiver; for each subject she/he checks extra carefully whether they understand her/him correctly.

Goal Gaining insight into the health literacy skills of the person with dementia and his/her primary informal caregiver, so that the professional can adjust communication accordingly. In terms of oral instruction and information this implies not too simple nor too complex information. And in terms of written material this implies not too much or too little information, nor materials with too few illustrations. 38

Working with the observation checklist of health literacy skills Preparation • Recognize that not all people are fluent in English (or the default language of your country). • Recognize that not being able to read or write is not a result of unwillingness to be taught, but of too little education due to social or personal circumstances. • In early stage dementia you will address especially the client him/herself; at later stages addressing his/her primary informal caregiver will become more important. Instructions for use • In practice professionals feel going through a questionnaire is ‘insulting’ or ‘makes people uneasy’. Because of this, do not offer the checklist itself, but embed the topics in a conversation, and then fill in the checklist either together with the network members, or after the home visit. In this conversation use all your observations concerning household items that may imply health literacy skills (books, newspapers, magazines, pen and paper at hand, computers, a TV-guide), as well as the kind of questions that they ask you. • Fill in two checklists: one for the person with dementia, one for the primary informal caregiver. • Adjust the frequency of your visits and the kind of interaction and education you will offer according to your findings. • During conversations do not focus your attention to the person with the highest level of skills all the time. • In your healthcare organisation, advocate for offering CDs, DVDs or cassettes with spoken information about dementia to clients with limited health literacy skills, so that you have those materials at hand. • Offer people with a high level of health literacy skills additional information that helps them to deepen their understanding of dementia, such as literature and autobiographical texts (e.g. books by other patients or informal caregivers) or websites. • Recognize that informal caregivers who have been monitoring their parent or partner for a long time can learn from this, and develop themselves to a higher level of health literacy skills.

More information • Check if there are organisations in your country or region who promote literacy in general and health literacy in particular, or digital skills. • www.healthliteracy.org.uk | www.who.int/healthpromotion/conferences/7gchp/track2/en/ • www.readingandwriting.eu • www.gezondheidsvaardigheden.nl | www.gezondheidsvaardigheden.nl/home/english/ • Vaart van der, R., Drossaert, C., Taal, E., Klooster, P., Hilderink-Koertshuis, R., Klaase, J. ,van der Laar, M. (2012). Validation of the Dutch functional, communicative and critical health literacy scales. Patient Education and Counseling, pp. 82-88.

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Observation checklist of health literacy skills This interaction tool can be used to determine health literacy skills in a person with dementia and his/her informal caregiver(s) by observing or asking them about the topics below. It is important to write down the answers for both the person with dementia and the primary informal caregiver. You can fill in the

checklist after careful observation and/or asking direct questions about skills in reading and understanding information. Use the scores to adjust your communication with and information for networks with higher or lower levels of health literacy skills.

Person with dementia Instruction: In case of the person with dementia three or more instances of “no” in the A-topics should alert you to limited skills in reading, and hence to offering materials with more illustrations. Three or more instances of “no” in the B-topics means you should focus more on the informal caregiver when presenting information. Observations/questions A A A A A A A B B B B B B

Finished secondary school or higher Has or had an occupation that requires reading and writing skills Has been speaking English from childhood, and is familiar with the mainstream culture Has magazines, newspapers or books at home and reads them Has a desktop, laptop or tablet at home and knows how to operate it Has a specific place to store important documents Reads forms and fills them in correctly Talks about changes in health or behaviour without being asked Explains information on dementia and other topics concerning support to other people Asks questions about health and about treatments Starts reading information leaflets right after receiving them Talks about information in magazines, newspapers, books, on TV or internet without being prompted Asks about methods and reasons (how and why) when given advice by a professional Total score, number of yes/no

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Yes

No

Primary informal caregiver Instruction: In case of the person with dementia three or more instances of “no” in the A-topics should alert you to limited skills in reading, and hence to engage in more frequent oral communication. Observations/questions A A A A A A A B B B B B B B B

Yes

No

Finished secondary school or higher Has or had an occupation that requires reading and writing skills Has spoken English from childhood, and is familiar with the mainstream culture Has magazines, newspapers or books at home and reads them Has a desktop, laptop or tablet at home and knows how to operate it Has a specific place to store important documents Reads forms and fills them in correctly Is actively interested in the situation of the person with dementia Talks about changes in his/her health or behavior without being asked Can explain information about dementia and other topics concerning support Actively asks questions about health and treatments Starts reading information leaflets right after receiving them Talks about information in magazines, newspapers, books, on TV or internet without being prompted Asks about methods and reasons (how and why) when given advice by a professional Follows advice given by the professional Total score, number of yes/no

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Tool 1.3 Deciding upon a particular interaction scenario An important task for professionals is to communicate in such a way that both the person with dementia and the informal caregiver feel acknowledged and understood, as this yields trust. This tool supports professionals in choosing an interaction scenario that is attuned to the fortes of all members of the social network and the health literacy skills they have. On the basis of his/her own observations, or on the basis of the Ecogram in combination with the observation checklist for health literacy skills, the professional can determine which of the four interaction scenarios for approaching and informing people is most appropriate.

Goal To decide upon a particular interaction scenario based on arguments; to agree on it with the person with dementia and those who are close to him/her, and record it in his/her care plan.

Working with an interaction scenario Preparation • First of all, ask yourself whether the client and the informal caregiver are capable of having, and willing to have, a conversation about dementia. • Take the scores from the observation checklist of health literacy skills seriously, but adjust your judgment when there are indications you should, for instance when someone developed him/herself up to another level. • Look at the Ecogram as well: how strong is this particular social network? Instructions for use • Study the four different ways of approaching a network of a person with dementia and those who are close to him/her, depending on the available health literacy skills and the strength of the social network. • Choose the scenario that seems most appropriate. • Attune your interaction scenario for this particular network to the health literacy skills that are available in it and the strength of the social network. • Do not offer the same educational materials about dementia by default. • Record what you agree on in the digital records (or the written log in the client’s home and in the office of your healthcare organisation), so that someone who might need to replace you follows your example. • If necessary, ask for support or education in communication skills.

Meer informatie • www.healthliteracy.org.uk | www.who.int/healthpromotion/conferences/7gchp/track2/en/ • www.gezondheidsvaardigheden.nl | www.gezondheidsvaardigheden.nl/home/english/ • Health Council of the Netherlands (2011). Laaggeletterdheid te lijf. Signalering ethiek en gezondheid, 2011/1. The Hague: Netherlands Centre for Ethics and Health, 2011. Publication number Health Council of the Netherlands: 2011/17. ISBN 978-90-78823-00-1

• Oosterberg, E., Bakx, J., Bommel van H., Elbrink, S. (2012). Visueel interactiemateriaal voor laaggeletterden. Accessed on May 10, 2014 through www.gezondheidsvaardigheden.nl/wordpress/wp-content/uploads/2012/12/Oosterberg-et-al_2011.pdf

• Saan, H., Singels, L. (2006). Gezondheidsvaardigheden en Informed Consent. Accessed on May 23, 2014 through www.gezondheidsvaardigheden.nl/wordpress/wp-content/uploads/2012/06/Gezondheidsvaardigheden-en-informed-consent.pdf

• Twickler, Th.B., Hoogstraaten, E., Reuwer, A., Singels, L., Stronks, K., Essink-Bot, M., (2007). Laaggeletterdheid en beperkte gezondheidsvaardigheden vragen om een antwoord in de zorg. Accessed on March 1, 2014 through janien.files.wordpress.com/2009/09/geletterdheid-dr-twickler09.pdf

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Deciding upon a particular interaction scenario 1. Ample health literacy skills – Strong social network Actions by professional

Check

Building trust (reflective listening – showing empathy) Providing information about dementia in both oral and written form Providing extra sources for written background information (books, courses) Offering to be accessible by e-mail Offering a peer group to participate in Agreeing on a low frequency for home visits, but evaluating this regularly Giving advice on useful supportive contacts in the network When that is called for: supporting the informal caregiver to activate those contacts Providing support in activating an evaluative attitude towards advice, medication, et cetera

2. Ample health literacy skills – Weak social network Actions by professional

Check

Building trust (reflective listening – showing empathy) Providing information about dementia in both oral and written form Providing extra sources for written background information (books, courses) Offering to be accessible by e-mail as well As professional, offering extra home visits through a higher frequency of visits Strengthening the social network Clarifying the nature of social-emotional relations in the network through a family group conversation Lightening the burden on the primary informal caregiver by enlisting more contacts Trying to increase the resources of the informal caregiver by using the energy diary Providing support in activating an evaluative attitude towards advice, medication, et cetera

43

3. Limited health literacy skills – Strong social network Actions by professional

Check

Building trust (reflective listening – showing empathy) Taking sufficient time for oral education Taking sufficient time for friendly and supportive conversations Using well-illustrated written materials in education Offering little written materials, but rather oral information with illustrations Stimulating a conversation about the educational materials with members of the network Inviting several people from the network to be present at your home visits Being even more alert on using familiar language and avoiding jargon Giving the most important message repeatedly Checking whether people understood you correctly, by actively asking questions Helping the client to formulate his/her most important question; same for informal caregiver Offering to help with filling in forms and/or questionaires

4. Limited health literacy skills – Weak social network Actions by professional Building trust (reflective listening – showing empathy) Appointing someone from outside the network as mentor Taking time for a home visit more often Taking sufficient time for oral education Taking sufficient time for friendly and supportive conversations Using familiar language and avoiding jargon Repeating the most important message regularly Checking whether people understood you correctly, by actively asking questions Stimulating client and informal caregiver to ask questions; ask for the most important issue Offering to help with filling in forms and/or questionaires

44

Check

Tool 1.4 Energy diary for informal caregivers The energy diary is an instrument for professionals to get informal caregivers about whom they are worried in touch with insights from positive psychology. It is a diary with four boxes: for describing three items that made the informal caregiver happy during the day that just passed, alongside one item that they felt was hard or difficult. In general, care partners of people with dementia will feel responsible 24 hours a day for an extensive period of time, and run a major risk of becoming overburdened. Children of people with dementia are also heavily burdened, due to the combination of informal care with their own family and work situation. As such, the number of pleasurable moment in an informal caregiver’s life may seriously decrease over time, which undermines his/her resources. The professional may ask partners and children to fill in the energy diary in the evenings, during a period of two weeks. With the information from the diary the professional can subsequently initiate a conversation about support that might be suitable.

Goal To enhance awareness, in the informal caregiver as well as the professional, of which day to day activities the informal caregiver feels are energizing him/ her. This insight can be used by the professional to get the informal caregiver in touch more often with those energy sources. Possibly this inspires informal caregivers to stand up for themselves and take a break, pick up an old hobby or reinitiate old social contacts.

Instructions for use • Have him/her write down in the evenings what situations or activities in the past day energized him/her the most, or made him/her feel good. • Walk through the energy diary together during a visit and ask the informal caregiver whether filling it in resulted in any particular wishes. • Have the informal caregiver formulate that wish him/herself. • Reinforce that desire through motivational interviewing, by having the informal caregiver express what it would give to him/her, if that particular wish would become a reality. • Try to support him/her in setting a goal with respect to that wish. • Only then consider what items surprised you positively in the informal caregiver’s diary; start a conversation about them. • Try to have the informal caregiver choose a pleasurable activity that can be realized in his/her vicinity (e.g. joining a book club; staying over somewhere; participating in a telephone befriending service or taking part in sports activities). • Invite the informal caregiver to share his/her experiences with peers / others in similar situations, and to keep track of his/her change.

More information • http://www.positivepsychology.org/ • Boer, A. de, Oudijk, D., Broese van Groenou, M., en Timmermans, J. (2012). Positieve ervaringen door mantelzorg; constructie van een schaal. In: Tijdschrift voor Gerontologie en Geriatrie, 43, pp. 243-255.

• Bohlmeijer, E., Bolier, L, Walburg, J.A. en Westerhof, G. (2013). Handboek positieve psychologie. Theorie, Onderzoek en Toepassingen. Amsterdam: Boom.

• Cuijpers M., Kruiswijk, W. (2012). Editorial: Aanspreken op kracht. In: Tijdschrift voor Gerontologie en Geriatrie, 43, p. 241.

• Peeters, J., Francke, A., Beek, S. van, Meerveld, J. (2007). Factsheet 2: Problemen

Working with the energy diary

en wensen van mantelzorgers van mensen met dementie; resultaten van de monitor

Preparation • Send the energy diary with the instruction to the informal caregiver, more than two weeks before your visit. • Ask the informal caregiver to fill in the diary for two weeks, preferably in the evenings.

Landelijk Dementieprogramma. Utrecht: Nivel.

• Zwaanswijk, M., Beek, A.P.A. van, Peeters, J., Meerveld, J., Francke, A.L. (2010). Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen van het ziekteproces. In: Tijdschrift voor Gerontologie en Geriatrie, 41, pp. 162-171.

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Energy diary for informal caregivers Name of informal caregiver:

Filled in from

..............................…

-

........................................................................................................................................................................................................................................................................

..............................…

-

....................…...................................…

to

..............................…

-

..............................…

-

....................…...................................…

How do you use this diary? The idea is that you write down which situations make you happy during the next period (at least two weeks). For each day you can describe at most three situations in the diary. Those situations may relate to your relative / partner / friend with dementia, but this is not a requirement. Examples are: sitting in the sun, visiting someone, having someone over to your house, carrying out your hobbies. In the fourth box you can write down what you thought was difficult that day. If you so wish, you can talk about this with the professional who gave you this diary, in order to find a solution. This diary is made to support you, so it is important that you fill it in as it suits you. It is not a problem if there is a day on which you have little or nothing to write about. Aside from actually filling in the diary you could talk to other people about it, and how you like using it. Perhaps other people have additional ideas that are useful to you.

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Date:

..............................…

-

..............................…

-

....................…...................................…

Today, did you see or speak with your relative / partner / friend with dementia?

I saw him/her

I spoke to him/her

No

What made me happy today? What gave me energy?

This was hard or difficult for me today. This cost energy.

1.

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2. Communication tools Tool 2.1 Communicating with people with dementia The checklist “Communicating with people with dementia” allows the informal caregiver to chart which communication aspects, in his/her experience, are most problematic in his/her contact with the person with dementia. It is important for the professional to subsequently discuss with the informal caregiver what he/she indicated, for when someone is made aware of a problem, it will become more prominent. In addition, having dementia is different for every individual, since 1) dementia can be caused by various diseases, 2) dementia has its own pace in every individual for subsequent stages to occur, and 3) dementia does not necessarily take away everything this particular person learned throughout his/her life. This also implies that the professional always has to respond to the person with dementia and his/her informal caregiver in a way that suits the particular context.

Instructions for use • After receiving and reading the list from the informal caregiver, always check whether you understand his/her answers correctly. • Together, estimate how serious the communication problems of the person with dementia are, and to what extent the informal caregiver needs support or education. • Are the communication tips you can provide sufficient? • Is it desirable or necessary to get help from a physiotherapist or speech and language therapist? • Record the required information in the care plan of the person with dementia.

More information • Haberstroh, J., Neumeyer, K., Krause, L., Franzmann, J., Pantel, J. (2010) TANDEM: Communication training for informal caregivers of people with dementia. Aging & Mental Health, 15 (3), pp. 405-413.

• McCallion, P. & Toseland, R.W. (2002) Contact houden met dementerende ouderen. Koninklijke Van Gorcum BV, Assen.

Goal Clarifying to the informal caregiver which changes he/she experiences in communicating with the person with dementia.

• NVLF (2009). Taal- en spraakstoornissen bij dementie. Accessed December 12, 2014 through www.logopedie.nl/site/taal-_en_spraakstoornissen_bij_dementie.

• Tacken, M., Oostveen, J., Debets, F., Kalf, H., Rompen, H., Nijhuis-van der Sanden, R. & de Swart, B. Communicatieproblemen bij dementie. Een inventarisatie van interactie-

Working with the checklist

en behandelmaterialen voor patiënten met beginnende dementie en communicatie

Preparation • Go through the checklist carefully before giving it to the informal caregiver, to be able to answer questions at any time. • Study the relevant literature and practice improved communication yourself, so that you can be a ‘model’ for the informal caregiver to follow. • If desired, get trained in the topic of communication problems.

problemen. Logopedie, 86, pp. 6-13.

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• Vandenbulcke, M. & Vandenberghe, R. (2011). Beeldvorming van taal en communicatie bij dementie. Tijdschrift voor psychiatrie, 53, pp. 625-633.

Communicating with people with dementia As an informal caregiver, you are very much aware of just how much is changing in the life of a person with dementia. That is certainly the case in everyday contact. Sometimes this might be fluent and familiar, sometimes it is simply hard. It can be useful to chart these changes in communication, and that is what this questionnaire is for.

The person with dementia... 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25

You answer the questions from your personal experience with the person with dementia. For each question check the answer that is appropriate. This checklist can be the start for talking to others about the observed changes in communication. A speech and language therapist can support you.

Always

Often

Sometimes

Never

Not applicable

keeps the conversation going him/herself joins me during a conversation makes eye contact with me during a conversation is talking as much as I am can keep track of the subject introduces a new subject pays attention to me during a conversation is telling stories that cannot be right uses words that are inappropriate gets emotional when he/she can’t speak likes talking with me points at something when he/she can’t find the word engages in the conversation in a group setting uses the right words with ease needs to find the right works uses short sentences uses the same, short sentence very often stops talking in the middle of a sentence uses the wrong words needs a lot of words to say something can’t stop talking hardly talks anymore, or not at all loses the storyline while he/she is talking says things I do not understand can easily be understood 49

The person with dementia... 26 27 28 29 30

Always

Often

Sometimes

Never

Not applicable

asks me to repeat what I said understands what I mean understands short questions better than long ones takes everything literally can keep track of a conversation in a noisy environment

Anything you would like to add: ...............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

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Tool 2.2 Interactive phone-calls In order to provide the person with dementia with appropriate services and to monitor the client’s situation correctly it is crucial for the case manager to get the necessary information. The case managers have experienced that the assessment provides much information on the so-called ‘Geriatric Giants’, but additional inquiry methods may also be helpful. To be able to understand the needs of the person with dementia, the case manager may use an interview guide. The following guide: • Advices the case manager to focus her/his attention on this one specific client before picking up the phone; • Presupposes that the case manager has planned the phone-call in advance, in order to make sure that the person with dementia is not alone at the time of the call; • Coaches her/him to ask the right questions about the Geriatric Giants (1st appendix to this tool) and to ask questions about (or to connect to) the spheres of interest (2nd appendix to this tool) and the biography of the person with dementia (3rd appendix to this tool); • Stimulates her/him to write down the answers of the person with dementia; • Supports the case manager to check the information of the person with dementia with the (in-)formal caregiver; • Supports the case manager to call the correct service provider with the needed skills; • Stimulates the case manager to share all new information with other professionals who bear responsibility for this client.

Goal To be able to adequately clarify the kind of support an individual person with dementia needs. Those needs may include: • Sharing emotions – Keeping company – Going out, to move, to do sports; • Making one’s home – Doing odd jobs – Gardening; • Activities of Daily Living + Providing meals – Household Daily Living – Providing of handy aids –Decision making about staying home alone or not; • Coordination of professional care – Watching day-/night rythm – Medical care and diagnosis – Advanced Care Planning at the end of life; • Giving advice – e.g. financial and juridical custody.

Working with interactive phone-calls Preparation • Take time for the call Instructions for use Give the tool a place at the desk where you make the phone call and try to stick to its tips; • Note the answers

More information • Check www.caring.com for information, tips and checklists • https://www.caring.com/articles/how-to-talk-about-incontinence • https://www.caring.com/articles/dementia-alzheimers-hygiene-problems • https://www.caring.com/static/household-safety-checklist.pdf

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Towards Interactive & Informative Phone-Calls with Persons with Dementia & Informal Caregivers

Preparation

Starting the call

Listening and Sharing

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• Make a date with the informal caregiver about the time you will call to make sure this person will be around for assistance. • Take time to review all information in the patient record before you call. • Consider any RAI information as a guide. • Take a moment to relax – realize you need time to make a good phone call. • Prepare to take notes.

• Use supportive, positive, non-technical language. Confirm who is on the call with the person with dementia and ensure that everyone can hear you and/or can be heard. • Focus on providing what information you can to empower the informal caregiver, acknowledge feelings. • Ask the informal caregiver to call you one day later to be able to check your notes.

• Clarify any and all expectations the person with dementia has of you and vice versa. • Use open ended questions about needs, habits, wishes, life history and the Geriatric Giants (Incontinence, Immobility, Instability (fall incidents), Intellectual impairment and Iatrogenic disease) when possible. • Listen actively: be friendly, supportive and use lay language; confirm answers with others on the call when unsure of reliability.

Ending the call

• Take the time to thank those on the call for speaking with you, and estimate when you foresee speaking with them next. Try to summarize all important decisions made with the person with dementia and informal caregiver. • Connect those on the call with written and illustrated educational material if appropriate.

Documentation

• Document all needs/wishes/issues that you heard. • Check your notes with the informal caregiver. • Share your notes, any new factual information, and decision points with the family practitioner and service providers.

Towards interactive & informative phone-calls with Persons with dementia who live without informal caregiver

Preparation

Starting the call

Listening and Sharing

• Make a date with his/her service provider about the moment you will call to make sure she/he will be around for assistance. • Take time to review all information in the patient record before you call. • Consider any RAI information as a guide. • Take a moment to relax – realize you need time to make a good phone call. • Prepare to take notes.

• Use supportive, positive, non-technical language. Confirm the service provider who is on the call with the person with dementia and ensure that both can hear you and/or can be heard. • Focus on providing whatever information you can to empower the service provider, acknowledge feelings. • Ask the service provider to call you one day after this call for a short chat, to be able to check your notes.

• Clarify any and all expectations the person with dementia has of you and vice versa. • Use open ended questions about needs, habits, wishes, life history and the Geriatric Giants (Incontinence, Immobility, Instability (fall incidents), Intellectual impairment and Iatrogenic disease) when possible. • Listen actively: be friendly, supportive and use lay language; confirm answers with others on the call when unsure of reliability.

Ending the call

• Take the time to thank those on the call for speaking with you, and estimate when you foresee speaking with them next. • Try to summarize all important decisions made with the person with dementia and the service provider. • Connect them with written and illustrated educational material if appropriate.

Documentation

• Document all needs/wishes/issues that you heard. • Check this documentation one day later with the service provider. • Make sure the service provider will call you if anything happens that makes her/him question your instructions. • Share your notes, any new factual information, and decision points with the family practitioner and the service provider.

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Appendix 1 Open-ended questions on the Geriatric Giant To be used as guideline for questions/discussion or as background information, during a home visit or interactive phone-call.

Incontinence • Are you having any accidents with your bowels or urine? • Do you have to rush to the toilet causing you to fall? • Are you having any difficulty getting on and off the toilet? • Are you using any incontinent product, attends or pads? • Are you having any skin problems because of your incontinence? • Is this a new problem for you? If yes: have you already discussed it with your doctor? • Would you like to receive more information on the best supportive aids for this problem?

More information • https://www.caring.com/articles/how-to-talk-about-incontinence • https://www.caring.com/articles/dementia-alzheimers-hygiene-problems

Immobility/Instability • Have you had any falls in the last 3 months? • If yes, what were the circumstances of your fall? • Are you using a walker/cane? • Has there been any change in your balance lately? • Are you doing the exercises the physiotherapist taught you? • Do you ever feel any dizziness? • Are you having any difficulty getting in and out of bed or on and off the toilet?

More information • https://www.caring.com/static/household-safety-checklist.pdf

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Intellectual Impairment • Is your family still visiting? • Are you able to visit your friends? • Do you have neighbors or other social contacts which might drive you somewhere if you wanted? • Is there any organisation in your town with volunteers to help older adult with transportation needs?

Iatrogenic Disease • Have there been any changes in you medication recently? • Do you ever forget to take your medication? • Do you know all unintended side effects of the medication you use?

Appendix 2 Spheres of interest in past and present

Date:

To be used as guideline for questions/discussion or as background information, during a home visit or interactive phone-call.

Name of client:

..............................…

Date of Birth:

-

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-

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-

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-

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Spheres of interest of client in past and present Please circle the answer that is most applicable. Clarify why.

Spheres of interest

Type

Interest

Communication

Reading books Reading newspapers Writing Watching TV Listening to radio Computer

Yes Yes Yes Yes Yes Yes

No No No No No No


No No No No No No

Embroidery Handicraft Drawing/painting Photography Gardening Animals Play billiards Play cards Listening to music Making music Games etc.

Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

No No No No No No No No No No No

Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes

No No No No No No No No No No No

Walking Cycling Skiing Swimming Dancing Other sports


No No No No No No


No No No No No No

Hobby’s

Sports and moving

Active

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Spheres of interest

Type

Interest

Contacts/Going out

Club life Theatre Cinema Pubs Travelling/Holidays

Yes Yes Yes Yes Yes

No No No No No

Yes Yes Yes Yes Yes

No No No No No

Politics Religion

Yes Yes

No No

Yes Yes

No No

General issues

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Active

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Appendix 3 Questionnaire on biography

Date:

To be used as guideline for questions/discussion or as background information, during a home visit or interactive phone-call.

Name of client:

..............................…

Date of Birth:

Questionnaire on biography 1 2a 2b 3 4a 4b 4c 5a 5b

Where were you born? When you grew up, how many brothers and sisters did you have? Are they all still alive? What did your parents do for a living? What did you do after primary school? Did you start searching for work or did you choose more education? If so, what is the highest level of education you completed? Work/Profession? At what age did you leave your parents’ house? Are you married? Did you marry young? Were you keen on staying independent?

6

What did your partner do to earn his/her living?

7a 7b

How many children do you have? Are they all still alive? Is there any subject that we forgot to mention of which you would like to give us some information?

8

-

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-

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Client

Informal caregiver

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Tool 2.3 Communication tips for informal caregivers Due to the decline in mental abilities, people with dementia change their way of dealing with and the interaction with other people over time. For informal caregivers it is often hard to find out how to communicate with their relative or friend with dementia. Primary care professionals can offer crucial support by providing informal caregivers with information and advice.

• Check in a next visit whether the communication tips helped them, and that everything is clear. Help them find the right direction when needed.

More information • Based on Huub Buijssen, The Simplicity of Dementia: A Guide for Family and Carers (2005, Jessica Kingsley Publishers Ltd.), translation of Buijssen, H.P.J. (2004). De heldere eenvoud van dementie: een gids voor de familie. Utrecht: Het Spectrum.

• DEMTEC Toolkit. In the United Kingdom the DEMTEC Toolkit was developed by Manthorp, Young en Howels.

The following aspects of the interaction with people with dementia are at stake: • Hearing & attention • Understanding • Right tone & attitude • Don’t ask too much • Preventing failure • Preventing fear and suspicion • Offering help when it is hard to express oneself correctly

Information is given about the importance of communicating with respect for the individuality of a person and promoting empowerment. Eight components of communication are described and applied in tips for professionals and tips for informal caregivers. This communication toolkit is especially useful to train primary care professionals in proper communication with people with dementia. The tools for informal caregivers are quite extensive, and because of that they are not always practical to use during individual home visits.

• FOTON, Regional Centre of Expertise for Dementia and Family Care in West-Flanders: www.familiezorg-wvl.be/foton.aspx

• Young, T., Manthorp, C., Howells, D. en Tullo, E. (2011). Developing a carer communication These communication tips are based on the work of Huub Buijssen, who wrote several books to support family members and offer insights in the process of declining mental abilities that is called dementia.

intervention to support personhood and quality of life in dementia. Ageing and Society, 31, pp. 1003-1025.

• Young, T., en Manthorp, C. (2009). Towards a code of practice for effective communication with people with dementing illnesses. Journal of Language and Social Psychology, 28,

Goal The goal of this document is to give informal caregivers concrete tips on how to deal with a person with dementia in a dementia-friendly way.

pp. 174-189.

• Young, T., Manthorp, C., Howells, D. en Tullo, E. (2011). Optimizing communication between medical professionals and people living with dementia. International Psychogeriatrics, 23:7, pp. 1078-1085.

Working with the communication tips • Always take some copies of this document with you on home visits. • When you notice that a family has questions about communication with and dealing with the person with dementia, use this to initiate the topic. Give them those tips from the document that are most useful to the family member and the person with dementia, and give them a copy of the whole document. • Try to discuss a particular instance from their life, to illustrate the use of the communication tips. 58

• Website: www.demtalk.org.uk

Communication tips in dealing with people with dementia Hearing & attention • Check if there are problems with the senses (eyes and ears). • Do not talk louder than usual. Say who you are. • Stay within the line of vision and stand at the same height, close by. • Make eye contact, or touch the person briefly if that is appropriate for him/her. • Make sure the environment is pleasant and quiet. • Do not engage in two things at the same time.

Understanding • Speak slowly, calmly and clearly. • Use short and clear sentences and familiar words. • Ask questions that start with “what”, “who”, “how“ or “where”. • Do not ask question that start with “why”. • Do not ask multiple choice questions, and avoid listing items. • Divide your message into several steps. • Check if the person with dementia understood what you were saying; pay attention to facial expressions and behavior, or ask them to repeat what you said. • Ask questions shortly before the moment that action is called for. • Ask for specific actions in the same environment every time. • Show certain things, guide the other into a movement, make the action attractive or try to evoke an automatic movement with the help of songs, humor, counting, ... • Tell the other what you are going to do; and then do it. • Connect your words with movements and the area around you; bring a newspaper when talking about the news, use pictures, clearly nod ‘yes’ or ‘no’, … • Information processing requires more time; so wait a bit long for an answer, or reformulate your question. • Repeat and summarize regularly what has been said. Have the other one write down important information, or do this yourself.

Right tone & attitude • Talk to the other person with respect, he/she is an adult. • Avoid speaking for the other person, and immediately filling in missing words. • Do not talk over the head of the person with dementia, but involve him/her in decisions and choices wherever that is still possible. Take over decisions where necessary. • Assume that the person with dementia realizes his/her situation, and understands what you are saying about him/her. • Let him/her know that you mean well, also non-verbally. • Be honest. Do not speak in jest, but rather address underlying emotions. • Always take into account the character, background and past of the person with dementia, and tune into it. • Pay attention to facial expressions, behavior and intonation, to judge whether what you say is understood correctly. • Kindness and a smile are often the key to good communication.

Don’t ask too much • Do not ask questions about the recent past. • Talk about what can be heard, seen, smelled, tasted or felt at thís moment. • Or talk about things from the more remote past. • Connect to interests and habits from the past. • Make sure there is order, regularity, structure, repeated ritual. • Do not only ask questions, but share something about yourself as well. • Your presence and a peaceful and interested attitude are often more important than words. • Do not extend a conversation for too long.

Preventing failure • Ask the right questions and create a situation in which the person cannot go wrong. • First give necessary information or describe the situation. • When choosing gets harder, simply ask for cooperation. • Be positive. Stress and stimulate what can still be done right. • Help him/her to save him/herself from difficult situations. • Do not dispute the other person and do not force another reality on to him/ her. Join his/her position yet guard the general flow of the conversation. 59

• Avoid punishing words like ‘always’, ‘never’. • Correct as inconspicuously as possible, only when necessary. • Respect the ‘façade’, accept any ‘pretext’.

Preventing fear & suspicion • Avoid words or subjects that make the person fearful, such as ‘hospital’, ‘money’, … • Avoid whispering. • Answer questions as honestly as possible. • Avoid standing in a higher position. • Speak in a relaxed, kind and loving way, with a friendly face. • Your words and your attitude should match. • Make use of unchanging rituals during your contact. • Address emotions and experiences, and direct the conversation to another subject, or do something pleasant together.

Offering help when it is hard to express oneself correctly • Talk and be as relaxed as possible. • In case of failure do not continue asking questions. • Do not tell him/her you understood something when you did not. • Repeat what you did understand, or respond to what you think he/she wanted to say. • Respond to intonation, movements and body language as well. • Do not fill in words or reactions too quickly. • When you do not manage to understand the other person, you can have him/her sense everything is all right with a smile or a light touch. These tips are based on work by Dutch author Huub Buijssen, which is translated as The Simplicity of Dementia: A Guide for Family and Carers (2005, Jessica Kingsley Publishers Ltd.). In Dutch: Buijssen, H. P. J. De heldere eenvoud van dementie: een gids voor de familie. (2004, Utrecht: Het Spectrum).

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3. Reflection tools Tool 3.1 Reflection tool for interaction between professional and client This reflection tool is designed to have professionals consider their own daily practice: “How do I communicate, and what does the day-to-day interaction between myself and people with dementia and those who are close to them look like?”

The tool consists of three parts: • Background: conversational partners, situation, theme. This is where you write down a factual description of the situation. Who were present? Where did the conversation take place and at what time of day? What was the topic? Use short keywords. • Reflection on the course of the conversation: any correct and less helpful expressions. Write down what you as the case manager said: what felt right and what felt less good? Take specific notes here, and clarify why you felt that way. • Lessons: Description of the problem, Signals or pivotal moments, Strategy used, Actual wording, Documentation that might help. Summarize in this part what the essential lesson is you draw from this conversation. An example: - Description of the problem: How can you acknowledge an informal caregiver, when the person with dementia denies all problems? - An example of a signal might be: the informal caregiver expresses non-verbally that what the person with dementia is telling you is incorrect. - A supportive strategy is to listen to the person with dementia first, and then give the informal caregiver the opportunity to speak. - Actual wording: “And as a family member, how do you feel about this situation?” This tool is preferably used in a team where team members engage in mutual evaluation. In individual situations as well, the tool provides an overview of the professional’s current fortes and opportunities for improvement.

Goal The goal of this tool is to identify and become aware of one’s daily practice, with its current fortes. In addition, it may shed some light on anything that is still lacking. It provides a way to incorporate a systematic approach in which professionals can still have their conversations with people with dementia and their informal caregivers, while dedicated time for reflection and evaluation is added. Evolving experiences no longer stay implicit, but can be expressed and shared. The lessons that come up can be shared during mutual evaluation sessions, or be a starting point for training and education of the professional.

Working with the reflection tool for interaction between professional and person with dementia Preparation • Discuss the reflection tool in a team meeting and explain how it should be used. • Agree on how to work with it in this team of professionals: - When do we fill in the form? (after every conversation, only after difficult conversations, as a monthly sample, et cetera) - When and how do we share the results? (mutual evaluation, individual coaching with one’s supervisor, et cetera) Instructions for use • Use this reflection tool to indicate immediately after a conversation how it went, how you dealt with upcoming issues, and what questions / words were useful. • When individual reflection is a goal, add more information to the document at a later, quieter moment. • When collective reflection and mutual evaluation is a goal, collect the respective reflection documents, and discuss them with other professionals during a team meeting. Focus on pleasant as well as less pleasant experiences. The pleasant ones help to share strategies and come up with ideas. Cases that were difficult can be looked at together, in order to develop a good strategy.

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More information • Kinsella, E.A. (2010). Professional knowledge and the epistemology of reflective practice. Nursing Philosophy: An International Journal for Healthcare Professionals, 11(5), pp. 3–14. • Mann, K., Gordon, J., & MacLeod, A. (2009). Reflection and reflective practice in health professions education: A systematic review. Advances in Health Sciences Education, 14, pp. 595–621. • Ter Maten-Speksnijder, A.J., Grypdonck, M.H.F., Pool, A., & Streumer, J.N. (2012). Learning Opportunities in Case Studies for Becoming a Reflective Nurse Practitioner. Journal of Nursing Education, 51(10), pp. 563–569

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Reflection tool for interaction between professional and client Conversational partners: Person with dementia / partner / other informal caregivers: Location: health care setting / home visit / phone-call / other:

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Kind of conversation: first contact / follow-up (2nd, 3rd contact) / longterm support (from 4th contact) Situation (what was the purpose of this conversation or of this part of the conversation)? ............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

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Did I use a particular premeditated strategy in this conversation? Yes / No Which one?

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What went right in the conversation? (describe as accurate / visual / literal as you can – in keywords) ............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

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Lessons Description of the problem

Signal, pivotal moments, boundaries

Strategy used

Example of question or sentence (actual wording)

Documentation that might help

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Tool 3.2 Reflection tool for responding to resistance and working with motivational interviewing The goal of motivational interviewing is to elicit behavior change in a person, and to enhance the intrinsic motivation for change in a client. The professional supports this behavior change in a ‘passive’ way; he/she supports the client to go in the right direction, but the client is autonomous in choosing to do so. The professional helps the client to clarify the ambivalence of his/her current situation in such a way that he/she becomes aware of it, and understands the need for change him/herself. Motivational interviewing has its roots in the context of addiction, but the interviewing techniques offered are generic in nature and as such they are also useful in supporting people with dementia and those who are close to them. This reflection tool specifically deals with responding to resistance, in cases a client does not move in the direction of change. Tool 3.3 is a self-evaluation tool for motivational interviewing.

Goal • Recognizing signals of resistance in the client. • Responding to resistance in an appropriate way: knowing and being able to apply several kinds of reflection. • Recognizing signals of the willingness to change, and working with them in concrete ways. • To know basic conditions for change and support them in a conversation. • To allow the power needed for behavior change to come from within the client.

Working with the reflection tool responding to resistance and working with motivational interviewing Preparation • Complete a training in motivational interviewing. • Go through several role play exercises with colleagues to practice the techniques before using them in a real setting with a client. • Try to pick a possible case and image how you would handle it. Instructions for use • Apply the techniques of motivational interviewing in a number of conversations. • To begin with, describe a few cases quite extensively with the help of this reflection tool and try to recognize several kinds of resistance and reflections in them. • Discuss this in your team, so that everyone has several examples and gets input from their own way of working. This reflection tool for responding to resistance can help to get a clear picture of the appropriate formulas and techniques.

More information • Miller, W.R. & Rollnick, S. (2014). Motiverende gespreksvoering: mensen helpen veranderen. Third Edition. Amsterdam: Ekklesia.

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Reflection tool for responding to resistance and working with motivational interviewing Conversational partners: Person with dementia / partner / other informal caregivers: Location: health care setting / home visit / phone-call / other:

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Kind of conversation: first contact / follow-up (2nd, 3rd contact) / longterm support (from 4th contact) Situation (what was the purpose of this conversation or of this part of the conversation)? ............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

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Note here as literal as possible what the person said and what your response was. ............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

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Clarify here when you said this, and especially why (e.g. what is the link with the basic conditions for behavior change: safety, knowledge, interest, self-esteem)? When?

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Interviewing techniques: write down examples of applying these techniques as literal as possible. Also note tips for wording, timing, et cetera. Circle: Simple Reflection (neutral repetition) - Amplified Reflection (reflects with greater intensity) - Double-Sided Reflection (reflects both sides of the ambivalence) - Shifting Focus (redirects attention to a less contentious topic or perspective) - Reframe (reflects and invites a different interpretation) Emphasizing Personal Control - Therapeutic Paradox ............................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

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Tool 3.3 Self-evaluation tool for motivational interviewing Motivational interviewing is a client-centered, directive method to enhance the client’s intrinsic motivation for behavior change. During conversations any ambivalence that the person with dementia or his/her informal caregiver has is explored and resolved. In this method the professional tunes into the person with dementia or his/her informal caregiver. Whereas healthcare practice usually implies that clients are provided with what they lack (medication, knowledge, insights, skills), motivational interviewing tries to elicit something they already possess, to wit the motivation and capability to change. In this way, and not only during the actual conversations, the professional respects the autonomy of the network. The goal of this tool is self-evaluation when using motivational interviewing. Reflection tool 3.2 is focused on recognizing and responding to resistance to change.

Goal Professionals actively train themselves in working with motivational interviewing, by answering questions about the course of at least one conversation per day and thus reflecting on that conversation. This way, professionals are eased into understanding and using the central notions of motivational interviewing.

Working with the self-evaluation tool for motivational interviewing Preparation • Read additional literature about motivational interviewing. • Complete a training in motivational interviewing. • Study this tool for self-evaluation of your own style of motivational interviewing. Instructions for use • Plan to use motivation interviewing techniques in at least one conversation per day. • After the conversation fill in the self-evaluation tool and give yourself a score. Try to keep this up for a month. • Then answer the question whether your contact with the people at issue has changed, and if so, how? Do you consider any changes to be positive or negative? • Write a piece for your manager about the sense/nonsense of using motivational interviewing for people with dementia and those who are close to him/her. What, if anything, has improved since you started working with this method?

More information • Elwyn, G., Dehlendorf, Chr., Epsein, R.M., Marrin, K., White, J. and Frosch, D.L. (2014). Shared Decision Making and Motivational Interviewing: Achieving Patient-Centered Care Across the Spectrum of Health Care Problems. In: Annals of family medicine, 12 no. 3, May/June, pp. 270-275.

• Lundahl, B.W., Kunz, C., Brownell, C., Tollefson, D., & Burke, B.L. (2010). A meta-analysis of motivational interviewing: Twenty-five years of empirical studies. Research on Social Work Practice, 20, pp. 137-160.

• Madson, M.B., Loignon, A.C. & Lane, C. (2009). Training in motivational interviewing: A systematic review. Journal of Substance Abuse Treatment, 36, pp. 101-109.

• Miller, W.R. and Rollnick, S. (2012). Motivational Interviewing, Third Edition: Helping People Change. NY: Guilford Press.

• Rollnick, S., Miller, W.R. en Chr.C. Butler (2013). Motiverende gespreksvoering in de gezondheidszorg. Werken aan gedragsverandering als je maar 7 minuten hebt. Amsterdam: Ekklesia.

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Self-evaluation after using motivational interviewing Motivation interviewing is a client-centered, directive method to enhance the client’s intrinsic motivation for change by exploring and resolving ambivalence. Today I consciously used the principles and skills of motivational interviewing in one conversation.

Actions (It did not work ...... 1 … 2 … 3 … 4 … 5 … 6 … 7 ...... It worked very well)

Score (0 ...... 7)

I asked open questions: I started my questions with interrogative words (how, what, where, who)

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I listened reflectively: I responded actively to feelings of the client and informal caregivers I briefly summarized what the client said I briefly summarized what the informal caregivers said I checked regularly if my understanding was correct

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I signalled and/or elicited change talk: I paid close attention in case the client / informal caregiver had any doubts about something (on the one hand, on the other hand) I noticed when the client / informal caregiver used change talk (want, can, need, et cetera) I reinforced the change talk by repeating or summarizing it I found out what the wishes and preferences of the client are (and have more insight in them) I consistently reinforced their own faith in the change I acknowledged the client I reinforced positive behavior I gave positive feedback I paid attention to the informal caregiver’s power I experience partnership, we are collaborating in this

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Today I give myself a score of for the quality of this conversation.

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Appendix Appendix 1 and 2

Appendix Appendix 1 and 2

Appendix Appendix 1 Accounting for the development of this toolkit and the tools presented here This toolkit for professional interaction is aimed at primary care professionals who work with people with dementia and their informal caregivers, such as district nurses, nurse practitioners and case managers. The toolkit is the result of a two-year innovation project in which researchers from three different countries (The Netherlands, Belgium and Canada) worked closely together with case managers from four different networks. In The Netherlands researchers from Windesheim University of Applied Sciences in Zwolle cooperated with case managers working for health care provider Geriant (in Heerhugowaard) and for the Network DementiePlus Noord-West Veluwe. In Belgium researchers from LUCAS, Centre for Care Research and Consultancy at the University of Leuven, cooperated with case managers working for FOTON, Regional Centre of Expertise for dementia and Family Care West-Vlaanderen in Bruges. In Canada a researcher from the Gerontology Department at Huntington University in Sudbury cooperated with case managers from the North East Community Care Access Centre in Sudbury and North Bay. The case managers introduced cases and described what kind of support and tools they needed with respect to the interaction with their clients. They subsequently worked on developing the tools in their teams, in cooperation with the researchers. For this cooperation and development we used the principles of Practice Development. That is, the professionals were facilitated by the researchers to explore within their own cases if, and if so how, the interaction in this particular case could be improved. The professionals gained an increased awareness of their own part in the interaction, learned how to carefully evaluate it, introduced ideas for improving the interaction tools, practiced with new ways of approaching clients or tested concept tools.

The project’s progress was monitored by a Consortium that consisted of several experts from the Netherlands, and the project managers of the four participating dementia networks. In addition, an Advisory Board of several experts reflected on the quality, relevance and ease of implementation of the tools. Within the four networks, professionals developed the concept tools in several steps, working together with one of the three researchers. For some they could start from existing tools. The tools as they are presented in this toolkit, are the result of an intensive process of exchanging those concept versions with the other networks, members of the Advisory Board and the experts from the Consortium. Table 4 below summarizes the different steps in developing the tools presented here. The interaction tools in this toolkit are not all-encompassing. The teams chose their own goals for improvement, which makes this range of tools quite varied and in particular not all-inclusive. The tools presented here are all tested and developed in practice. This means we gained insight in the relevance, validity and usability of these tools. We do not know yet how efficient the tools are, and what their particular effects are: in this respect they are still tools in the process of being developed. Presumably, additional practical tools are needed, and further research into their efficiency is desired. We invite professionals by all means to share their experience with the tools presented here. This feedback is important to develop the tools further, and may be the starting point of exploring with professionals and researchers what other tools could be developed. Email address: [email protected].

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Table 4. Steps in the development of the interaction tools presented in this toolkit

Tool

Developed on the basis of an existing format

Developed on the basis of theory

Developed on the basis of empirical data

Feedback by professionals

Checked in practice by professionals

Country were it was developed

Yes Yes

Yes Yes

Yes Yes

Yes Yes

Yes No

Netherlands Netherlands

No

No

Yes

Yes

Yes

Netherlands

Yes

Yes

No

Yes

Yes

Netherlands

No

Yes

Yes

Yes

Yes

Netherlands

No No

Yes Yes

No Yes

Yes Yes

No Yes

Canada Belgium

No No

Yes Yes

Yes Yes

Yes Yes

Yes Yes

Belgium Belgium

No

Yes

Yes

Yes

Yes

Netherlands

Contextual tools 1.1 Ecogram 1.2 Observation checklist health literacy skills 1.3 Deciding upon a particular interaction scenario 1.4 Energy diary for informal caregivers Communication tools 2.1 Communicating with people with dementia 2.2 Interactive phone-calls 2.3 Communication tips for informal caregivers Reflection tools 3.1 Reflection on interaction 3.2 Reflection on responding to resistance and motivation interviewing 3.3 Self-evaluation motivational interviewing

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Appendix 2 Essential literature and other sources of information • Verkade P.J., van Meijel B., Brink C., van Os-Medendorp H., Koekkoek B., Francke, A.L. Delphi research exploring essential components and preconditions for case management in people with dementia. BMC Geriatrics, 2010 10:54. DOI: 10.1186/1471-2318-10-54.

Part I

Communication model and good practices

• De Haes, H., Bensing, J. (2009). Endpoints in medical communication research, proposing a framework of functions and outcomes. Patient Education and Counseling, 74 (3), pp. 287-294.

Part II Interaction tools 1.1 Ecogram • Brink, Cora, Anouk Poll en Petra van Leeuwen (2013). Quez, vragen naar zelfregie. Utrecht: Movisie, 2013. • Herman, S. (2009). Het Ecogram. Sociale Netwerken in kaart gebracht. Leuven: Politeia. • Kruijswijk, Wilco, Mieke van der Veer, Cora Brink, Willy Calis, Jan Willem van de Maat en Inge Redeker (2014). Aan de Slag met Sociale Netwerken. Utrecht: MOVISIE-Vilans-Actiz. • Scheffers, M. (2010). Sterk met een vitaal netwerk. Empowerment met de sociale netwerkmethodiek. Bussum: Coutinho. • Smit, B. en van Gennep, A. (2008). Werken aan sociale relaties. Praktijk en theorie. Utrecht: Vilans. • Steyaert, J. & R. Kwekkeboom (2012). De zorgkracht van sociale netwerken. Utrecht: MOVISIE.

1.2 Observation checklist health literacy skills • Check if there are organisations in your country or region who promote literacy in general and health literacy in particular, or digital skills. • www.healthliteracy.org.uk www.who.int/healthpromotion/conferences/7gchp/track2/en/ • www.readingandwriting.eu • www.gezondheidsvaardigheden.nl www.gezondheidsvaardigheden.nl/home/english/ • Vaart van der, R., Drossaert, C., Taal, E., Klooster, P., Hilderink-Koertshuis, R., Klaase, J. ,van der Laar, M. (2012). Validation of the Dutch functional, communicative and critical health literacy scales. Patient Education and Counseling, pp. 82-88.

1.3 Deciding upon a particular interaction scenario • www.healthliteracy.org.uk • www.who.int/healthpromotion/conferences/7gchp/track2/en/ • www.gezondheidsvaardigheden.nl • www.gezondheidsvaardigheden.nl/home/english/ • Health Council of the Netherlands (2011). Laaggeletterdheid te lijf. Signalering ethiek en gezondheid, 2011/1. The Hague: Netherlands Centre for Ethics and Health, 2011. Publication number Health Council of the Netherlands: 2011/17. ISBN 978-90-78823-00-1 • Oosterberg, E., Bakx, J., Bommel van H., Elbrink, S. (2012). Visueel interactiemateriaal voor laaggeletterden. Accessed on May 10, 2014 through www.gezondheidsvaardigheden.nl/wordpress/wp-content/uploads/2012/ 12/Oosterberg-et-al_2011.pdf • Saan, H., Singels, L. (2006). Gezondheidsvaardigheden en Informed Consent. Accessed on May 23, 2014 through www.gezondheidsvaardigheden.nl/wordpress/wp-content/uploads/2012/ 06/Gezondheidsvaardigheden-en-informed-consent.pdf • Twickler, Th.B., Hoogstraaten, E., Reuwer, A., Singels, L., Stronks, K., Essink-Bot, M., (2007). Laaggeletterdheid en beperkte gezondheidsvaardig heden vragen om een antwoord in de zorg. Accessed on March 1, 2014 through janien.files.wordpress.com/2009/09/geletterdheid-dr-twickler09.pdf

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1.4 Energy diary informal caregiver

2.2 Interactive phone-calls

• http://www.positivepsychology.org/ • Boer, A. de, Oudijk, D., Broese van Groenou, M., en Timmermans, J. (2012). Positieve ervaringen door mantelzorg; constructie van een schaal. In: Tijdschrift voor Gerontologie en Geriatrie, 43, pp. 243-255. • Bohlmeijer, E., Bolier, L, Walburg, J.A. en Westerhof, G. (2013). Handboek positieve psychologie. Theorie, Onderzoek en Toepassingen. Amsterdam: Boom. • Cuijpers M., Kruiswijk, W. (2012). Redactioneel: Aanspreken op kracht. In: Tijdschrift voor Gerontologie en Geriatrie, 43, p. 241. • Peeters, J., Francke, A., Beek, S. van, Meerveld, J. (2007). Factsheet 2: Problemen en wensen van mantelzorgers van mensen met dementie; resultaten van de monitor Landelijk Dementieprogramma. Utrecht: Nivel. • Zwaanswijk, M., Beek, A.P.A. van, Peeters, J., Meerveld, J., Francke, A.L. (2010). Problemen en wensen van mantelzorgers van mensen met dementie: een vergelijking tussen de beginfase en latere fasen van het ziekteproces. In: Tijdschrift voor Gerontologie en Geriatrie, 41, pp. 162-171.

• Check www.caring.com for information, tips and checklists. • https://www.caring.com/articles/how-to-talk-about-incontinence • https://www.caring.com/articles/dementia-alzheimers-hygiene-problems • https://www.caring.com/static/household-safety-checklist.pdf

2.1 Communicating with people with dementia • Haberstroh, J., Neumeyer, K., Krause, L., Franzmann, J., Pantel, J. (2010) TANDEM: Communication training for informal caregivers of people with dementia. Aging & Mental Health, 15 (3), pp. 405-413. • McCallion, P. & Toseland, R.W. (2002) Contact houden met dementerende ouderen. Koninklijke Van Gorcum BV, Assen. • NVLF (2009). Taal- en spraakstoornissen bij dementie. Verkregen op 12 december 2014 van www.logopedie.nl/site/taal-_en_spraakstoornissen_bij_dementie. • Tacken, M., Oostveen, J., Debets, F., Kalf, H., Rompen, H., Nijhuis-van der Sanden, R. & de Swart, B. Communicatieproblemen bij dementie. Een inventarisatie van interactie- en behandelmaterialen voor patiënten met beginnende dementie en communicatieproblemen. Logopedie, 86, pp. 6-13. • Vandenbulcke, M. & Vandenberghe, R. (2011). Beeldvorming van taal en communicatie bij dementie. Tijdschrift voor psychiatrie, 53, pp. 625-633.

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2.3 Communication tips for informal caregivers • Based on Huub Buijssen, The Simplicity of Dementia: A Guide for Family and Carers (2005, Jessica Kingsley Publishers Ltd.), translation of Buijssen, H.P.J. (2004). De heldere eenvoud van dementie: een gids voor de familie. Utrecht: Het Spectrum. • FOTON, Regional Centre of Expertise for Dementia and Family Care in WestFlanders: www.familiezorg-wvl.be/foton.aspx • DEMTEC Toolkit. In the United Kingdom the DEMTEC Toolkit was developed by Manthorp, Young en Howels. Information is given about the importance of communicating with respect for the individuality of a person and promoting empowerment. Eight components of communication are described and applied in tips for professionals and tips for informal caregivers. This communication toolkit is especially useful to train primary care professionals in proper communication with people with dementia. The tools for informal caregivers are quite extensive, and because of that they are not always practical to use during individual home visits. • Young, T., Manthorp, C., Howells, D. en Tullo, E. (2011). Developing a carer communication intervention to support personhood and quality of life in dementia. Ageing and Society, 31, pp. 1003-1025. • Young, T. en Manthorp, C. (2009). Towards a code of practice for effective communication with people with dementing illnesses. Journal of Language and Social Psychology, 28, pp. 174-189. • Young, T., Manthorp, C., Howells, D. en Tullo, E. (2011). Optimizing communication between medical professionals and people living with dementia. International Psychogeriatrics, 23:7, pp. 1078-1085. • Website: www.demtalk.org.uk

3.1 Reflection tool for interaction between professional and person with dementia • Kinsella, E.A. (2010). Professional knowledge and the epistemology of reflective practice. Nursing Philosophy: An International Journal for Healthcare Professionals, 11(5), pp. 3–14. • Mann, K., Gordon, J., & MacLeod, A. (2009). Reflection and reflective practice in health professions education: A systematic review. Advances in Health Sciences Education, 14, pp. 595–621. • Ter Maten-Speksnijder, A.J., Grypdonck, M.H.F., Pool, A., & Streumer, J.N. (2012). Learning Opportunities in Case Studies for Becoming a Reflective Nurse Practitioner. Journal of Nursing Education, 51(10), pp. 563–569.

3.2 Reflection tool for responding to resistance and working with motivational interviewing • Miller, W.R. & Rollnick, S. (2014). Motiverende gespreksvoering: mensen helpen veranderen. Third Edition. Amsterdam: Ekklesia

3.3 Self-evaluation tool for motivational interviewing • Elwyn, G., Dehlendorf, Chr., Epsein, R.M., Marrin, K., White, J. and Frosch, D.L. (2014). Shared Decision Making and Motivational Interviewing: Achieving Patient-Centered Care Across the Spectrum of Health Care Problems. In: Annals of family medicine, 12 no. 3, May/June, pp. 270-275. • Lundahl, B.W., Kunz, C., Brownell, C., Tollefson, D., & Burke, B.L. (2010). A meta-analysis of motivational interviewing: Twenty-five years of empirical studies. Research on Social Work Practice, 20, pp. 137-160. • Madson, M.B., Loignon, A.C. & Lane, C. (2009). Training in motivational interviewing: A systematic review. Journal of Substance Abuse Treatment, 36, pp. 101-109. • Miller, W.R. and Rollnick, S. (2012). Motivational Interviewing, Third Edition: Helping People Change. NY: Guilford Press. • Rollnick, S., Miller, W.R. en Chr.C. Butler (2013). Motiverende gespreksvoering in de gezondheidszorg. Werken aan gedragsverandering als je maar 7 minuten hebt. Ekklesia.

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Cecile aan de Stegge • Jan S. Jukema • Birgit Pianoso • Nele Spruytte • Carolien Smits Windesheim 2016