Assistive technology in dementia care

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Journal of Assistive Technologies Assistive technology in dementia care: methodological issues in research design Annette Altendorf Jason Schreiber

Article information: To cite this document: Annette Altendorf Jason Schreiber , (2015),"Assistive technology in dementia care: methodological issues in research design", Journal of Assistive Technologies, Vol. 9 Iss 1 pp. 38 - 47 Permanent link to this document: http://dx.doi.org/10.1108/JAT-11-2013-0032 Downloaded on: 23 September 2015, At: 02:57 (PT) References: this document contains references to 25 other documents. To copy this document: [email protected] The fulltext of this document has been downloaded 164 times since 2015* Downloaded by 104.194.92.158 At 02:57 23 September 2015 (PT)

Users who downloaded this article also downloaded: A.J. Astell, B. Malone, G. Williams, F. Hwang, M.P. Ellis, (2014),"Leveraging everyday technology for people living with dementia: a case study", Journal of Assistive Technologies, Vol. 8 Iss 4 pp. 164-176 http://dx.doi.org/10.1108/ JAT-01-2014-0004 Richard Fleming, Shima Sum, (2014),"Empirical studies on the effectiveness of assistive technology in the care of people with dementia: a systematic review", Journal of Assistive Technologies, Vol. 8 Iss 1 pp. 14-34 http://dx.doi.org/10.1108/ JAT-09-2012-0021 Peter Cudd, Gail Mountain, (2014),"Assistive technology for people with dementia", Journal of Assistive Technologies, Vol. 8 Iss 4 pp. - http://dx.doi.org/10.1108/JAT-10-2014-0022 Access to this document was granted through an Emerald subscription provided by All users group

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Peer-reviewed paper Assistive technology in dementia care: methodological issues in research design

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Annette Altendorf and Jason Schreiber

Dr Annette Altendorf is a Research Assistant, based at Academic Department for Old Age Psychiatry, Prince of Wales Hospital, Sydney, Australia. Dr Jason Schreiber is a Forensic Physician, based at Clinical Forensic Medicine (CFM), Victorian Institute of Forensic Medicine (VIFM), Melbourne, Australia and an Adjunct Senior Lecturer based at Monash University, Melbourne, Australia.

Abstract Purpose – The purpose of this paper is to illustrate some of the ethical issues and methodological obstacles encountered when trialling and using safer walking technologies and monitoring devices in dementia care. Design/methodology/approach – Using a number of recent studies as examples statistical, methodological and ethical issues are illustrated, which impact on the feasibility of randomised controlled trials or quasi-experimental designs. Findings – Much has already been achieved in using technology to aid people with memory and related problems. However, statistical evidence for the effectiveness of safer walking and monitoring devices in dementia care is still lacking. Careful considerations such as “treat the client as you would like to be treated” should be applied, when making a decision about a particular device. Originality/value – Safer walking and monitoring technology for people with memory and related problems is a rapidly advancing field of research. This is an updated discussion on methodological, statistical and ethical issues. Keywords Assistive technology, Dementia, Research design, Memory problems, Digital accessibility, Aids for the disabled Paper type Viewpoint

Introduction – every-day digital technology and dementia care Smart technologies, such as navigation systems, apps on smart phones and home automation technology, are part of our everyday life. The potential of assistive technology (AT) in aiding people with memory and related problems is less well known. It is estimated that there are currently 44 million people living with dementia worldwide and, that this number could almost double in the next 20 years (HealthDay News, 2013). It has been criticised, that these projections are based on older studies and do not incorporate evidence for decreasing rates of dementia in particular strata within the population (Matthews et al., 2013). Three recent studies in Denmark (Christensen et al., 2013), the UK (Matthews et al., 2013) – and the USA (Stallard, 2014) compared dementia prevalence rates in elderly populations with rates for the same age groups 10-20 years earlier. The results in these studies reported better cognition in those 93 years and older (Christensen et al., 2013), decreasing rates of dementia in those 65 years and older (Matthews et al., 2013) and substantial decline of severe cognitive impairment in the USA elderly population (Stallard, 2014) in comparison to these age groups one to two decades earlier.

Received 28 November 2013 Revised 23 April 2014 Accepted 22 December 2014

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Alzheimer’s disease, the most common form of dementia, is a degenerative brain disease of unknown cause, and usually starts in late middle age or in old age. Alzheimer’s disease results in progressive memory loss, impaired thinking, disorientation, and changes in personality and mood and leads in advanced cases to a profound decline in cognitive and physical functioning. Vascular dementia (as multi-infarct dementia) is another common form of dementia. It is caused

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DOI 10.1108/JAT-11-2013-0032

by cerebrovascular disease, and can present with similar symptoms as Alzheimer’s disease. Mixed dementia is a term which refers to a form of dementia, which involves both Alzheimer’s disease and vascular dementia (Medline Plus Medical Dictionary, 2014). Due to changes in personality and deterioration of cognitive and physical skills, people with dementia usually require assistance with activities of daily living. This dependency on others increases, when cognitive and physical capabilities deteriorate and can place strain on family members and carers (caregiver burden). A commonly encountered problem is disorientation, when out walking. This poses the risk of accidents or injuries and can be a cause of nursing home placement. AT can be a way to provide support for people with memory and related problems to stay at home longer and to relieve carer burden. This paper discusses the nature of some of the more complex devices, such as global positioning system (GPS), infrared sensor, integrated circuit (IC)/radio frequency identification (RFID) technologies for safer walking and monitoring systems, and discusses their strengths and weaknesses in supporting people with dementia. Particular emphasis is given to methodological, statistical and ethical issues which impact on the feasibility of randomised controlled trials and quasi-experimental designs.

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Safer walking technologies for people with memory and related problems: do GPS technologies decrease the number of accidents? For a person with memory problems, a wide range of technologies are available to minimise the risk of injury or accident when out walking. Usually, a transmitter device sends an alert to a carer’s phone, a call centre or sometimes the police. Some countries, for example, Australia, also have a toll free telephone number and personal identification number linked to the state police’s “Safely Home” database, which can be worn on a bracelet and contacted, if a person gets disoriented. GPS and RFID can be used to define a geofence and passive infrared movement detectors can be installed, for example, at door or property exits. Such devices send alerts, if the user leaves a geographical boundary (geofencing), crosses a sensor, when leaving the house or property or does not return within a pre-programmed time limit. GPS location devices can be integrated into clothing, smart phones, tablets, bracelets, etc. and can aid in locating a disoriented person. Technical limitations in GPS and RFID technologies, such as atmospherics, buildings, human error in data entry, the presence of mobile phone towers, etc. can lead to inaccurate or incorrect information. In people with dementia, minor technical errors can result in safety concerns. In a recent conference abstract (Milne and McKinstry, 2012), the authors argued that research evidence is insufficiently robust to support the use of GPS tracking devices to enable safer walking and aimed to consider the feasibility of randomised controlled trials in this area of research. Higher quality studies, such as randomised controlled trials require control of multiple variables, control groups and other conditions, which are difficult to achieve in dementia care situations. The studies discussed below are used as examples to describe some of the obstacles in more detail. In a recent pilot study, Pot et al. (2012) aimed to examine the “feasibility”, “acceptability” and “effectiveness” of a GPS tracking unit with general packet radio service. The device has the size of a pager, can be worn on a belt and, sends position coordinates via the mobile phone network to a secured web site. The caregiver can locate the person with dementia (and view the route he or she took) via the web site and contact the care receiver using the loudspeaker function on the unit. The technology was tested with 33 dyads of persons with dementia and their caregivers. Inclusion criteria for people with dementia were that they lived at home and were able to consent to the participation in a study testing tracking technology. Study participants also had to be functionally and cognitively able to participate in traffic without major risk. Study effects were evaluated in a one-group pre-post test design. The post measurement took place directly after the participants used the system for three months. Five of the 33 dyads of care receivers and caregivers dropped out (15.2 per cent). Technical reasons (difficulties with the telephone connection or localisation; failing battery), as well as health issues (not being able to go out alone safely or, no interest in going out alone due to the progression of the disease), were cited as reasons for study attrition. In most cases the person with dementia took the GPS device with them, when going outside. However, sometimes, the device was left at home. Reasons given were familiarity with the road, reluctance to take the device or a low battery. In one case the device was always switched off. In total, 30 per cent of caregiver could not always reach the care

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receiver. Most care receivers were reluctant to use the telephone function, because they were concerned, that the person with dementia would not understand where the voice came from. However, this did not seem to be a problem for most care receivers. Participants answered a number of questions on the use of the device. For example, 25 per cent of care receivers (5/20) reported going outside more often on their own, as a result of using GPS, and 50 per cent (10/20) worried less when outside on their own. Some participants reported that they felt controlled by the tracking device. In caregivers self-report questionnaires on role-overload and worry were used to assess “effectiveness”. The questionnaires were completed at pre- and post-test. Paired t-tests were used to analyse change and effect sizes (Cohen’s d) were used to report clinical relevance. The analysis of effectiveness was discussed only for those caregivers, who were able to reach the person with dementia. Caregivers who were not able to reach the person with dementia were excluded from the results. Caregivers showed a trend to feel less worried (medium effect size). No changes in caregivers’ feelings of role-overload were found (small to medium effect size). Effect sizes for the subgroup of caregivers, who could not reach the care receiver, and who probably experienced more worry, were not discussed. The study illustrates a number of methodological and ethical issues, which can be found in other studies in this area of research as well. Participants were representative for people with dementia who were able to move independently, able to participate safely in traffic and competent to make their own decision. Caregivers were eligible when they had a computer and internet connection, were able to use it, and in general able to pick up the person with dementia. The study might have been less successful in more dependent participants. More disabled or less motivated persons with dementia did not complete the study, which lead to a non-random drop out and possibly biased the statistical analyses. Effect sizes were small to medium and illustrate how small sample sizes can affect conclusions. For example, the paired t-test for role-overload would have resulted in statistically significant effects in a larger sample. Progression of cognitive decline complicated the comparison of pre- and post-test scores. Effectiveness was measured as a reduction in self-reported feelings of role-overload and worry. More objective assessments, such as reduction of incidents (disorientation, injuries), were not reported. Theoretically, a randomised control group would have been possible, but would have required more time for recruitment, assessment and randomisation. The suitability of a recently developed way-finding device for people with dementia was evaluated in a study by Grierson et al. (2011). The device, in its original form, consists of a wearable belt that is integrated with GPS system, and operates to provide the wearer with directional signals through several small motors. The motors vibrate lightly to provide tactile cues to direct the wearer to their destination. To test the new technology’s application to individuals with Alzheimer’s disease, the device was modified so that custom software and a wireless USB hub enabled the researcher to control the vibration of the motors locally through use of a laptop. In total, 12 participants with dementia or mild cognitive impairment walked four novel routes through the corridors of a hospital while wearing the belt. Ten participants completed the trial and two participants dropped out due to difficulties understanding the experimental directions. The remaining participants displayed some deficiencies in attending to the directional signals that led to way-finding errors. To evaluate the suitability of the device the number of way-finding errors was correlated with each participant’s mini-mental status examination (MMSE) score (Folstein et al., 1975). In those participants who completed the experiment (n ¼ 10), the MMSE was not significantly correlated with number of errors, which might have been due to the low number of errors in this sample. Participants also completed a simple questionnaire on a five-point Likert scale (with higher scores indicating positive response). High mean ratings of the belt’s usefulness as a navigational aid, ease of use and comfort suggest that the device was perceived as useful and not difficult or uncomfortable to wear. The authors concluded that the way-finding belt has potential as a navigation aid for individuals with mild dementia, but might not be relevant to those community-dwelling persons with dementia that has progressed into more moderate stages. Several technical obstacles would need to be overcome before the way-finding device could be used in a more complex environment. Safety issues, such as how to determine when it is no longer safe for a person to rely on the device due to the progression of cognitive decline, would also need to be addressed. Rasquin et al. (2007) conducted a survey about technical devices to support outdoor mobility for persons with dementia with a group of informal caregivers (n ¼ 15) and health care professionals

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(n ¼ 10). A case study with one carer/patient dyad using a simple mobile phone with GPS was also conducted to test whether a GPS system could be used as an aid in preventing people with dementia from getting lost. The participants in this case study were going to move to a new apartment in an unfamiliar environment and the wife was anxious that the husband would get disoriented, when going out alone. There were several technical problems. While the caregiver was able to contact the service centre, the location given for the person with dementia was several streets away from the actual location. The three button interface of the device proved to be too complicated for the care receiver. However, both care recipient and caregiver, expressed the opinion, that the device would be useful, if technical and design problems could be rectified. The authors contend that the main outcome of the study was the need, expressed by both informal and professional caregivers, for a solution for the problem of wandering and getting lost in dementia. A monitoring system designed to help caregivers to locate a person with dementia who has wandered away from home was tested in a trial with seven users (Altus et al., 2000). The main component of the device are a miniature transmitter, which emits a constantly pulsing radio signal and a receiver, which is able to locate the transmitter for up to a mile on the ground and several miles by air. Caregivers and people with dementia were interviewed before and after using the system for several months. Qualitative case studies were used to describe the effects of the device. The system appeared to increase peace of mind in some caregivers while some people with dementia found the technology bothersome to wear. Additionally, an opinion survey of family caregivers (n ¼ 106), professional caregivers (n ¼ 173) and search and rescue workers (n ¼ 73) was conducted. The respondents attended small group presentations where they watched a short video, listened to a brief description of the equipment and completed the survey. Mean survey responses suggested that, on average, participants agreed that the device was superior to existing search methods, would improve safety and reduce caregiver stress. The authors conclude that the device is a valuable tool deserving further study. The qualitative case studies highlight a number of issues, which should be considered, when testing and reporting on safer walking equipment. Only three case studies were reported. The results for the rest of the participants were not discussed. The authors remark that, regardless of what people may think of an idea, the actual implementation is likely to offer a different perspective of the issues involved. From a methodological perspective, while offering some interesting qualitative insights, the small sample size does not lend itself to statistical analyses, which would require a larger sample and standardised assessments. The opinion survey, which was conducted with a sample size of 352 respondents, was not based on practical experience with the equipment. The development of “safer walking” technologies is advancing rapidly and there are a range of technologies available, which can potentially aid to avoid situations where a vulnerable person has become lost. However, the studies described here illustrate earlier findings (Milne and McKinstry, 2012) in that statistical evidence with regards to the question whether GPS systems effectively reduce the number of incidents (accidents, injuries) in people with dementia, is difficult to obtain. The studies illustrate the complexity of this particular area of research. Characteristics of cognitive decline, such as the time it takes a person with dementia to learn the use of a new device, the progressive nature of the disease as well as safety concerns can impact on the feasibility to recruit larger samples and control groups. Ethical issues with regards to wearing a tag have also been raised in some situations and may lead to reluctance to participate in a research study on AT in dementia care.

Smart home technologies and other home modifications A smart home is a home equipped with lighting, heating and electronic devices that can be controlled remotely by smartphone or computer (Oxford Dictionary Online, 2013). While there is a burgeoning research into new technologies, few studies in smart home technologies for health care situations seem to comply with more rigorous standards of design. For example, in more than 2,300 citations searched for a review of smart home technologies for health and social care (Martin et al., 2009), no studies met the inclusion criteria (randomised controlled trials, quasi-experimental studies, controlled before and after studies and interrupted time series analyses).

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In practical terms, a “smart home” for a person with dementia often means the implementation of monitoring systems/telecare, that is, infrared, video and other sensor technology to collect information on a person’s daily activities, behavioural and sleep patterns and other physiological parameters. Concerns about safety and confidentiality, when using these technologies, have been debated. Ethical issues raised are, for example, the potential for unauthorised collection of health care information, deliberate misuse or unauthorised disclosure of sensitive information.

In door telecare and monitoring technology

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Rowe et al. (2009) conducted a randomised pilot study to test the effectiveness of a night monitoring system. Nighttime activity in persons with dementia increases the risk for injury and unattended home exits and can result in nursing home placement. The technology was designed for informal caregivers to use at home, and consisted of a security system control panel, wireless receiver, motion sensors, door opening sensors and a bed occupancy sensor. Data from 53 subjects (26 subjects in the treatment group and 27 controls) were collected over a 12-month period regarding injuries and unattended home exits that occurred while the caregiver slept. A pretest-posttest control group repeated measures design was used. Data were collected at baseline and then several times over a 12 months period. Nighttime activity frequently resulted in nursing home placement. A total of nine events (injuries or unattended home exits) occurred during the study with six events occurring in the control group. In the original Kaplan-Meier survival analysis and Cox proportional hazards regression, there was no difference in time until first incident between the groups. In a secondary analysis of the data, mixing treatment and control subjects, that is overriding the randomisation in treatment and control groups, experimental subjects were 85 per cent less likely to sustain an event than control subjects. While this is one of the few randomised control designs in this area of research, relevant information, such as the distribution of injuries and unattended home exits in treatment and control group at baseline and sample sizes for analyses of subgroups (which allow the assessment of reliability of the statistical results) is lacking. Overall, due to the mixing of treatment and control group in the second analysis, the statistical results do not convincingly document that the monitoring system does in fact lead to a reduction in injuries or unattended home exits. Schikhof and Mulder (2008), Schikhof et al. (2010) described the development of a system for remote monitoring at night in a nursing home for people with dementia. The system was designed to address practical problems such as the need of a few staff members to respond to a large number of nighttime alerts and the frequency of false positive alarms. Different design options were discussed with stakeholders. For each of three problematic areas (falling, panicking and wandering of resident) all possible scenarios were summarised. Components of the monitoring system were discussed in conjunction with possible actions of the staff member on duty and the time needed to respond. The final monitoring system consisted of a video camera and a sound monitor, in addition to the more commonly used infrared sensors beside (and above) the residents’ bed. The camera and sound monitor enabled the staff member on duty to see life images (and hear the sounds) to make a decision whether to respond to the alarm and go to the bedroom. The design and descriptive evaluation of the monitoring system was reported. The system was tested with four residents in a selected ward during the evening and night shifts during a four-week period. Nursing home staff and management rated the system as satisfactory. Statistical data as to whether the technology reduced incidents (injuries, falls or unattended home exits) were not reported. Ethical concerns with regards to using a video camera were also discussed. In a quasi-experimental study, Holmes et al. (2007) assessed the extent to which technology can augment or substitute for direct staff intervention in non-acute late-evening and night time situations in a nursing home setting. The monitoring system consists of a bed exit sensor, and bathroom and bedroom exit monitors. Caregivers are alerted via a silent pager when a high-risk resident exits his or her bed, bedroom or bathroom according to norms that are established for each resident. This permits the caregiver to come to the resident’s assistance and potentially reduce falls. Caregiver response times are also recorded. The monitoring system was implemented for dementia residents of a special care unit in a large (50-bed) nursing home. Another special care unit matched in terms of unit-wide case mix and cognition was used for comparison. A total of 78 residents (38 on the intervention unit and 40 on the comparison unit) completed a baseline

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and one additional follow-up (12 or 15 months) assessment. The 78 participants constituted the analytic sample. In total, 66 residents completed all three assessments. Whether missing data were randomly distributed was not reported. Generalised linear mixed models were used to test whether the technology led to a decrease in falls or injuries. Generalised estimating equations were used to test the robustness of the model. Results showed that there was no significant reduction in falls and injuries (group  time estimate [se] ¼ 0.093 [0.07], p ¼ 0.18). As indicated by the accident/incident reports, 192 accidents occurred during the course of the study. Almost 50 per cent of all accidents occurred in residents’ rooms. There were hardly any accidents or injuries in the nurses’ station (1 per cent). Data indicated that approximately 75 per cent of accidents were the result of a fall, with 49.0 per cent of those falls the result of an unknown origin, in which residents were found on the floor. The treatment and control group did not differ significantly in number of falls at baseline. However, a significant group difference in baseline falls did occur with respect to the final analytic sample in the context of the multivariate analyses (Holmes et al., 2007, p. 327). There were several limitations to the study. Due to the quasi-experimental design, some baseline characteristics were not equally distributed in the comparison groups. The authors contend, that it was not possible to randomise within units because of contamination (i.e. staff and patients would be affected by treatment and control conditions being carried out at the same unit). An additional limitation of the study was that nursing staff members were not fully supportive of the implementation of the monitoring system. Staff continued to check on residents every two hours (or more frequently), even though a goal of the project was to reduce the necessity for frequent night rounding. Staff received training in a monitoring system and heightened awareness of risk factors for falls. However, no reduction in falls or injuries was observed in comparison to the control group. While the study documents that a quasi-experimental design is feasible in this area of research, it also points to some of the limitations. The availability of increasingly sophisticated technology has meant that ambulation can be measured with precision over an extended period. Makimoto et al. (2008) and Greiner et al. (2007) aimed to examine the feasibility of an IC tag-monitoring system to record different aspects of movement and patterns of walking in residents of dementia care facilities in Korea in 2006. Various indicators were developed to measure temporal patterns of ambulation over time, such as the median distance moved per hour and the percentage of hours moved. Greiner et al. described some of the data generated by the system: the frequency of detection by each receiver; the duration of stay in each location, the cumulative distance walked per day; and a graphic display of the movement pattern. To evaluate the accuracy of IC tag-monitoring, one participant was observed for seven days. Observations were carried out by student nurses and a research assistant who received training on how to record the subjects’ activities. The authors mention, that the information collected by the movement pattern mapping system and observational records were in agreement, but provide no statistical evidence. An IC tag-monitoring system was further tested in a study by Makimoto et al. (2008). Eight residents in a long-term dementia care unit in Korea were monitored for 12 consecutive days. A number of movement indicators were reported, such as the median distance moved at different times of the day and the percentage of hours with movement. The authors reported that data of the monitoring system and observational records corresponded in participants with a low frequency of detection or short distance moved in terms of location and time. However, no other evidence of validation is provided. Correlation coefficients between MMSE score and median distance moved per day was calculated and did not reach statistical significance. Overall, aspects of reliability and validity of the data were not well described in either study. The question remains whether the technology is clinically relevant and whether it can aid in increasing safety for residents. Franco et al. (2008) conducted a feasibility study of a system for non-invasive monitoring of subjects at home. Electrical activity was recorded from room lights and from electrical domestic appliances (such as oven, coffee machine, washing machine and dryer). The data were translated into the probability of physical activity or a particular Activity of Daily Living. In total, 13 volunteer subjects were monitored for a period of six months (range 3-8). The mean age of the subjects was 80 years and all lived alone at home. One person had moderate Alzheimer’s disease. A one-week validation was carried out to ascertain whether the recorded activity actually occurred. The installation comprised three steps, fitting of a sensor to detect activity of

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domestic appliances and lights, calibration and installation of an asymmetric digital subscriber line for data transmission. Data were transferred to an external server for analysis. The estimation of the probability for a specific activity occurring was based on whether an individual was present in the room (i.e. light switched on) and, whether a particular appliance was in use. Each subject was monitored for a week and recorded their daily activities. The recordings were used to verify that sensor activity corresponded with the use of domestic appliances. The main problem was that the sensors did not register electrical activity if the lamps in the light fittings were too weak (40 watts). The authors mention that data measured by the monitoring technology corresponded with the information recorded in the diaries. Results were mainly presented in graphical form and statistical information was not reported. The authors contend that the study results showed that daily and nocturnal activity could be well differentiated, that activity was regular and different between subjects and that patterns could be recognised. The probability of having eaten, taken a bath and going to the toilet could be calculated each day. Eating was the most accurately measured Activity of Daily Living while toileting and bathing results were less accurately measured. The study highlights conflicts which can arise between privacy concerns and accuracy of information. Less invasive monitoring systems, such a data from electrical domestic appliances might yield less accurate data than more invasive technologies, such as cameras, bed exit sensor and bathroom exit monitors.

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˚ (2006) examined the effects of access control technology A study by Margot-Cattin and Nygard on everyday lives of people with severe dementia living in a secure unit. The technology, used inside the house, had the goal of increasing security and autonomy, by unlocking doors only for authorised patients and staff members. Each door in the unit was equipped with an electronic system, which controlled locking and unlocking. As someone authorised (i.e. wearing a chip card) entered the antenna’s perimeter, the door unlocked and access was granted. The system was also used to block or unblock elevators, and to record the access of everyone equipped with a chip card. The staff members and the unit’s residents participated in the study. Data were collected through interviews and participant observations with residents and staff over six months. In total, 15 residents were observed on and off, and three residents were observed more closely. The results were qualitative and the authors contend that access technology can support the residents’ sense of security, orientation and adaptation to the environment. While qualitative data collection can be a valuable tool to collect information, a limitation of the study is the lack of statistical evidence to indicate that the technology promoted well-being and safety in participants. Kinney et al. (2004) described the process of installing a monitoring system in the homes of 19 families who were caring for a relative with dementia. The use of the system was evaluated for a period of 24 weeks. The system was internet based and consisted of cameras and door-, water- and power-sensors that were routed through a controller unit via a broadband-connected computer to a web site. Text messages, indicating activity of sensors, were sent to the carer’s phone. Technical problems included system outage, which could cause serious problems for care recipients and caregivers. Over the course of the trial six families dropped out of the study (two participants were placed in a nursing home; two participants became unable to ambulate; one participant did not leave the system in place and one caregiver found the system too burdensome). Interview results reported in the paper did not include the two caregivers whose relative with dementia broke a hip within one month of installation of the system, or the caregiver who found the system too burdensome. Results from the remaining 16 caregivers indicate that, although the use of technology is not without challenge, it has the potential to facilitate family caregiving. In total, 14 of the group of 16 caregivers (88 per cent) reported that “the system made life easier (e.g. peace of mind; added security; easier to keep track of the person with dementia)”. However, seven of the 16 caregivers (44 per cent) also mentioned that “the system made life more difficult (e.g. cell phone alerts can be annoying; one can become dependent on the system; it is ‘one more thing’ to worry about)” (Kinney et al., 2004, p. 362).

Issues surrounding the use of monitoring technology in people with dementia Ethical controversies and concerns regarding the use of monitoring devices for people with dementia may be one reason of the reluctance to participate in research studies. This may also contribute to small sample sizes, discontinuation and drop outs in some studies.

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Advancements in new safer walking and monitoring technologies lead to a number of ethical and privacy issues. Within dementia care these questions are exacerbated by the specific vulnerabilities in this client population. Points which have been raised are the privacy and security of data collected by monitoring devices (infrared, RFID, video and other sensor technology), the reliability of the device (risks through technical failure), health concerns and the question, whether safer walking and monitoring technology are indeed more efficient than usual care. Christian principles, such as “treat the client as you would like to be treated” (Authorised King James Bible, Luke 6:31), should be applied when deciding whether or not to use a particular device. Additionally, when making a decision whether or not to use a particular safer walking or monitoring technology, careful consideration should be given to the individual situation of caregiver and client, the motivation of stakeholders and the risks involved. Commonly debated issues in this regard are, for example, ethical concerns in relation to some more extensive measures (i.e. RFID implants in persons with dementia), which might be considered an unacceptable restriction of personal freedom, especially, if evidence of an objective reduction in falls, injuries and other incidents in comparison to usual care, is not documented. Other concerns, which have been discussed, are health risks (i.e. carcinogenic effects) and the possibility that technical failure can lead to accidents. Problems with security, confidentiality and integrity of the collected information have also been highlighted. Sophisticated technological solutions carry the risk that information can be accessed by unauthorised persons for commercial or criminal purposes and involves the possibility, that personal data are acquired or distributed without one’s knowledge. Concerns about lack of transparency when obtaining informed consent for the use of monitoring technology have been voiced as well as concerns about the possibility of mandatory government programmes to enforce monitoring technology. Additional controversies surround the question, whether legal requirements sufficiently safeguard the confidentiality of sensitive information.

In summary: why are randomised controlled trials difficult to achieve in this area of research? A number of characteristics influence the feasibility of randomised controlled trials, which are considered the best standard for medical research. Randomised trials in general require effort, time and resources to recruit representative samples, to quantify hypotheses and to ensure adequate randomisation. A particular problem is presented by the requirement to maintain an intention to treat principle, if effectiveness is to be tested, when encountering missing data. Missing data are a part of almost all studies with several time points, and there are a number of alternative ways of dealing with missing information. In recent years, statistical solutions such as multiple imputation and other methods drawing on likelihood-based methods (mixed models), have been employed in medical research. A favourable theoretical property of such models is that they accommodate data that are missing at random and, avoid the necessity to use complete case analysis and other possibly biased strategies (Little and Rubin, 1987/2002). However, these methods only apply, if statistical assumptions are fulfilled, and require statistical expertise in their application (Bodner, 2008). In comparison with randomised trials in other populations, obstacles to test safer walking and monitoring technologies can be exacerbated by the characteristics and mostly progressive nature of cognitive decline. Points which have been illustrated here stem from the feasibility to recruit and maintain larger samples, non-random attrition, consequences of technical failure and restrictions to employ adequate statistical methods. For some devices, the feasibility to recruit and maintain larger samples is restricted by functional and cognitive capabilities in study participants. For example, to test safer walking technologies, participants need to be able to participate in traffic without major risk. This ability can deteriorate over the course of the study. People with dementia might also not see the need to participate in a trial of a new device, lack the motivation to persist (if things get too burdensome), take time to learn the use of a new technology and, not all participants will eventually be able to use the device. Attrition is a common problem in longitudinal studies. In dementia, the progression of the disease (and medical co-morbidity) leads to non-random drop out, i.e. persons with poorer skills or health are more likely to have incomplete data. Participants may have missing data, for example, because it is no longer safe for them to rely on the device or

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they are no longer able to use it. Some participants have incomplete information because they are placed in a nursing home, become unable to ambulate or because of worsening co-morbid medical conditions. Due to the progression of the disease pre- and post-test scores are difficult to compare. Such statistical inequalities may result in biased conclusions. Technical failure and human error (such as system outage; localisation errors; failure to charge the battery; etc.) can lead to serious consequences in people with dementia and, is associated with more safety concerns in this population than it would be in less disabled participants. Statistical challenges are associated with small sample sizes and non-random drop out. Adequate statistical methods can often not be employed to correct for inequalities in baseline characteristics and for incomplete data. These difficulties may in part explain why many studies use opinion surveys of carers when evaluating a technology rather than, for example, measures of reduced number of falls or incidents. In conclusion, while these obstacles exist, some of the above studies illustrate, that higher quality studies are achievable in this area of research. Such studies usually need more time, effort and resources. A Christian ethical approach as outlined for example in Luke “And as ye would that men should do to you, do ye also to them likewise” should be applied when deciding whether and how to trial and whether or not to use a particular device (Luke 6:31, Authorised King James Bible).

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About the author Dr Annette Altendorf (PhD) works as a Research Assistant for the Academic Department for Old Age Psychiatry. Particular interests are longitudinal study designs and methodologies. Dr Annette Altendorf can be contacted at: [email protected] Dr Jason Schreiber is a Forensic Physician at the Victorian Institute of Forensic Medicine and a Adjunct Senior Lecturer at the Monash University, Melbourne. He has an interest in preventative aspects of medicine including the care for elderly and related forensic medical issues.

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