D3.05 Focus group report on ADLs that can be monitored with RMT
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806999 – RADAR-AD – D3.05
806999 – RADAR-AD
Remote Assessment of Disease And Relapse:
Alzheimer’s Disease
WP3 - Communications with regulatory authorities, patient
associations, payers and ethical boards
D3.05 Focus group report on ADLs that can be
monitored with RMT
Publishable Summary
Background
Although Alzheimer’s disease (AD) is most commonly characterised by memory deficits, it is clear that
declines in functional domains are also apparent. However, there is a dearth of sensitive measures of
these domains for people with AD. The aim of this work was to i) identify areas of function that may
be potentially important to measure among people with mild cognitive impairment (MCI) or mild AD
dementia and ii) identify the potential barriers and facilitators to implementing the use of remote
monitoring technology (RMT).
Methods
Individuals with MCI or mild AD dementia and those who support them were invited to take part in a
qualitative focus group. Topic guides were used to facilitate group discussions.
Results
Six focus groups with a total of 40 participants were held across three European countries from May
to July, 2019 (2 in London, United Kingdom, 2 in Amsterdam & Utrecht, The Netherlands and 2 in
Thessaloniki, Greece). Four common themes from this qualitative data were identified: i) meaning of
function, ii) impact of disease on function, iii) monitoring function and iv) role of technology. There was
a general acceptance of and enthusiasm for the idea of monitoring function using RMT across groups.
The results from a sorting task of activities showed that “keeping track of current events, remembering
appointments, family events, medications” and “sleeping” were ranked very important domains to
monitor, by people with MCI or mild AD dementia and carers, respectively. Both groups rated “walking
or changes in walking” of second highest importance to potentially track. “Difficulties at work”,
“learning new skills” and “driving” were not at important to monitor according to the majority of those
with MCI or mild AD dementia, and most carers agreed. Simplicity of design, discreetness, adaptability
to disease stage and user-friendliness were the key recommended attributes of potential RMT. A fifth
theme emerged during carer group discussions: v) interpersonal relationships, highlighting the shared
burden of AD and the importance of carer inclusion.
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Conclusions
The findings of this work demonstrate that the areas of daily functioning most pertinent for those with
MCI or mild AD dementia, relate to everyday, basic survival skills. The views and perspectives
presented in this report should be reflected upon and implemented where possible. This will improve
the applicability and eventual success of the RADAR-AD programme, and ultimately improve the lives
of people with AD.
LIST OF TABLES
Table 1 List of Activities of Daily Living (ADL) and interpersonal functional domains……………………….7
Table 2 Characteristics of participants with MCI or mild AD dementia ………………………….……..……….8
Table 3 Characteristics of those who support/supported an individual with AD
dementia……………………………………………………………………………….………………………………………………………9
Table 4 Common challenges experienced by participants with MCI or mild AD dementia................11
Table 5 Examples of currently used technologies…………….……………………………………………………….…….14
Table 6 Suggested Uses for RMT ………….….……………………………….……………………………………………...……16
Table 7 Results of sorting task for participants with MCI or mild AD dementia …………………..………….18
Table 8 Common Challenges experienced by participants with a diagnosis of AD dementia……………21
Table 9 Examples of previously used technologies ………………………………………………....…..……………….24
Table 10 Suggested Uses for RMT…………………………………………………………………………………….…………..…26
Table 11 Barriers and facilitators to RMT for people with MCI or mild AD dementia ……………..….……27
Table 12 Results of sorting task for those who support/supported an individual with AD
dementia……………………………………………………………………………………………………………………………….………..28
LIST OF APPENDICES
Appendix 1 Topic Guide - RADAR-AD: People with MCI or mild AD
dementia Focus group
Appendix 2 Topic Guide - RADAR-AD: Carer Focus group
Appendix 3 Results of Sorting Task – People with MCI or mild AD
dementia
Appendix 4 Results of Sorting Task – Carers
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TABLE OF CONTENTS
1 Introduction ............................................................................................................... 5
2 Methods ...................................................................................................................... 6
2.1 Design & Participants ................................................................................................ 6
2.2 Procedure ................................................................................................................. 6
2.3 Analysis..................................................................................................................... 8
3 Results .......................................................................................................................... 8
3.1 Participant characteristics ........................................................................................ 8
3.2 Perspectives of people with a diagnosis of MCI or Mild AD dementia ........................ 9
3.2.1 Meaning of Function ......................................................................................... 9
3.2.2 Impact of disease on Function…….……………………………………………………………………10
3.2.3 Monitoring Function………………………………………………………………………………………..13
3.2.4 Sorting Task ……………………………………………………………………………………………….……13
3.2.5 Role of Remote Monitoring Technology (RMT)……………………….…………….………….14
3.3 Perspectives of those who support/supported an individual with AD dementia 20
3.3.1 Meaning of Function………………………………………………………………………………………..20
3.3.2 Impact of disease on function…………..…………………………………………………..…………….21
3.3.3 Monitoring Function…………………………………………………………………………………….....22
3.3.4 Sorting Task …………………………………………………………………………………………….........23
3.3.5 Interpersonal Relationships ………………………………………………………………………...…..23
3.3.6 Role of Remote Monitoring Technology (RMT)…………………………………….…….……..24
4 Discussion …………………………………………………………………………………………………….……….…..30
4.1 Summary of Findings……………………………………………………………………………….….......30
4.2 Interpretation & Future Considerations………………………………….…………………………31
5 Conclusion…………………………………………………………………………………………………….…………….34
6 Appendices ……………………………………………………………………..…………………………………………35
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1. Introduction
The ultimate goal of the Remote Assessment of Disease And Relapse: Alzheimer’s Disease (RADAR-
AD) programme is “the development and validation of technology-enabled, quantitative and sensitive
measures of functional decline” in people with Alzheimer’s Disease (AD) dementia. Although AD is
most commonly characterised by memory deficits, it is clear that declines in activities of daily living
(ADL) functional domains, in addition to changes in interpersonal functional domains, may also be
apparent. However, more sensitive measures of declines in functional activity are urgently required,
for people with AD. Such measurements may have the potential to contribute to clinical decision
making and ultimately improve care for those with a diagnosis of AD. More detailed tracking of
functional domains may provide a wealth of information to clinicians and service users alike, and
potentially contribute as prognostic indicators in the future.
The work presented throughout this document forms a crucial part of the project’s planned Public and
Patient Involvement (PPI) activities, by providing gathered expertise from locally run focus groups in
three European countries. In addition to these focus groups, the RADAR-AD Patient Advisory Board
(PAB)1 also provided input about similar issues in a face-to-face focus group discussion in March 2019,
which was moderated by staff of Alzheimer Europe staff. This work is one of the set deliverables for
work package 3 (WP3) of the RADAR-AD programme. The findings of this report, together with the
input from the PAB, inform other WPs and specifically contribute to Objective 2 of the overall RADAR-
AD programme defined as follows; “Prioritise pre-existing wearable/home-based sensors and devices
and computerised functional tasks based on existing literature, discussions with patient/caregivers and
regulators, and our own piloting, and linking these to the available RADAR-CNS platform. (WP3 and
WP4)”. In combination with findings of a systematic review of the literature, the overall goal of this
PPI work is to identify the most meaningful measures of AD-related functional impairment.
Therefore, the aim of this work was to explore a cross-national perspective of the concept of
1
¨The RADAR AD Patient Advisory Boards has been set up by Alzheimer Europe to provide relevant feedback and advice to
the different Work Packages from the beginning to the end of the project. It involves people affected by dementia from differ ent
countries. Most members of the PAB are members of the European Working Group of People with Dementia.
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functional domains, to identify areas of function that may be potentially important to measure and to
identify the potential barriers and facilitators to implementing the use of remote monitoring
technology (RMT), among people with mild cognitive impairment (MCI) or mild AD dementia. The
views of those who have supported someone with these conditions were also captured.
2. Methods
2.1 Design & Participants
Individuals with MCI or mild AD dementia and those who support/supported them were invited to
take part in focus groups, which were held in three European countries; the United Kingdom (UK), the
Netherlands (NL) and Greece (GR). Participants were recruited through specialised memory disorder
clinics, voluntary organisations and charities, consent to contact for scientific research studies
databases and through previously established PPI groups. Two groups were held in each country; one
for people with a diagnosis and one for people who support or previously supported a person with AD
dementia. People with a diagnosis were invited to bring a relative or friend if they wished, to support
them during the focus group.
2.2 Procedure
Topic guides were used to facilitate group discussions for both people with MCI or mild AD dementia,
and for those who have experience supporting someone with a diagnosis. These were adapted from
similar work conducted as part of the Remote Assessment of Disease And Relapse: Central Nervous
System (RADAR-CNS) programme, by Simblett and colleagues 2018.2 Some of the questions and
activities were taken from the topic guide developed for the PAB consultation. Topic guides facilitated
the group discussions. Feedback on the contents and wording of the topic guide material was sought
from members of a PAB, which was led by Alzheimer Europe, Luxembourg. Amendments were
implemented based on suggestions provided by the group, which to the led final topic guide versions
used (Appendix 1 & 2). Guides were translated into native languages where applicable and addressed
the two main overarching themes as follows:
What does “day to day” functioning mean and what are the most important functional
domains to potentially monitor for people with MCI or mild AD dementia?
What are the potential barriers and facilitators to RMT, for people with MCI or mild AD
dementia?
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2
Simblett, SK, Matcham, FAE, Siddi, S, Bulgari, V, Barattieri, C, Hortas Lopez, J, Ferrao, J, Polhemus, A, Maria Haro, J, de Girolamo, G, Gamble, P,
Hotopf, MH & Wykes, THM 2018, 'Barriers and facilitators to engagement with mHealth technology for remote measurement and management of
depression: A qualitative analysis.', JMIR mHealth and uHealth
Table 1 List of Activities of Daily Living (ADL) and interpersonal functional domains
Activities of daily living functional domains Interpersonal functional domains
Reading and Writing Social interaction
e.g. taking part in conversations
Managing finances, Motivation, signs of apathy or withdrawal
e.g. writing checks, online banking, tax records)
Navigating when traveling to a destination, outside Maintaining social roles
of neighbourhood either by car, bus, walking,
finding car in parking lot.
Organising self-care Using a mobile phone
Household management, running errands &
shopping
e.g. preparing a meal in logical order, remembering
to turn off appliances, tidying, buying
clothes/groceries
Planning and completing tasks
Learning new skills,
e.g. new technology
Understanding the plot of TV shows, books,
news or conversations
Finding the right words
Difficulties at work
Driving or accidents whilst driving
Sleeping
Walking or changes in walking
Using a computer or phone
Misplacing objects
Keeping track of current events, remembering
appointments, family events, medications
Remembering an event or fact from a few days
earlier
The semi–structured group interactions were facilitated by native speakers and lasted approximately
90 -120 minutes in duration. The moderator of each group briefed participants on the rationale behind
the focus group gave an overview of the overall aims and objectives of RADAR-AD and obtained
consent. Where possible another person took notes during the sessions and a RADAR-AD researcher
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was present. The moderator led discussions using the previously described topic guides and each
group also completed a sorting task exercise. Participants were provided with a list of activities of daily
living (ADL) functional domains and interpersonal functional domains as outlined in Table 1. Next,
participants were asked to reflect on the importance of monitoring each task for people with a
diagnosis of MCI or mild AD dementia and to categorise their views as “not at all important”, “fairly
important” or “very important”.
2.3 Analysis
Participants consented to an audio recording of the discussions, which were reviewed and used to
compile an independent report from each participating country. Greek and Dutch reports were
translated into English to enable the combined analysis, which is presented in this report. Individual
reports from each country, detailing the perspective of participants with MCI or mild AD dementia and
the perspective of those who support them, were drafted. The lead contributor (GL) reviewed both
reports from each country in detail, which aided the identification of emerging overarching themes
and sub themes. Participant characteristics were analysed using descriptive statistics.
3. Results
3.1 Participant characteristics
Six focus groups with 40 participants were held across three European countries from May to July,
2019 (2 in London, UK [Group a (n = 7) & Group b (n = 3)], 2 in Amsterdam & Utrecht, NL [Group a (n
= 4) & Group b (n = 8)] and 2 in Thessaloniki, GR [Group a (n = 9) & Group b (n = 9)]). Participants in
the UK categorised as having MCI did not have an official diagnosis of AD at the time of participating
in the focus group.
Table 2 Descriptive characteristics of participants with MCI or mild AD dementia (Group a), separated
by country
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UK NL GR
(n = 7) (n = 4) (n = 9)
Age (yr) mean (±SD) 71.4 (9.4) Unavailable 73.2 (5.4)
Gender
Male, n (%) 3 (42.9) 3 (75) 1 (11.1)
Female, n (%) 4 (57.1) 1 (25) 8 (88.9)
Diagnosis
MCI, n (%) 3 (42.9) 2 (50) 8 (88.9)
Mild AD dementia, n (%) 4 (57.1) 2 (50) 1 (11.1)
UK = United Kingdom, NL = the Netherlands, GR = Greece MCI = mild cognitive impairment,
AD = Alzheimer’s disease
Table 2 outlines the demographic characteristics of participants from Groups a who were attended by
people with MCI or mild AD dementia, while Groups b were run with people who currently support or
have previously supported a person with a diagnosis (Table 3).
Table 3 Descriptive characteristics of those who support/supported an individual with AD dementia
(Group b), separated by country
UK NL GR
(n = 3) (n = 8) (n = 9)
Age (yr) mean (±SD) 73.7 (19.2) Unavailable 57.9 (11.3)
Gender
Male, n (%) 1 (33.3) 5 (62.5) 4 (44.4)
Female, n (%) 2 (66.7) 3 (37.5) 5 (55.6)
Diagnosis of person supported
MCI, n (%) 0 (0) 0 (0) 0 (0)
AD, n (%) 3 (100) 8 (100) 9 (100)
UK = United Kingdom, NL = the Netherlands, GR = Greece MCI = mild cognitive impairment, AD =
Alzheimer’s disease
3.2 Perspectives of people with a diagnosis of MCI or Mild AD dementia
When data was combined from participants with MCI or mild AD dementia from the UK, the NL and
GR the following 4 themes emerged i) meaning of function, ii) impact of disease on function, iii)
monitoring function and iv) role of technology. Sub themes for each overarching theme are explored
in detail below.
3.2.1 Meaning of Function
“Carrying on doing what I want to do – finding ways of making that happen when it gets difficult”
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There was an in-depth exploration of what tasks represented current day-to-day functioning among
participants. The following three sub-themes were further identified: habitual survival skills, social
engagement, and interests & other commitments.
Habitual survival skills
Participants in GR noted that the term functioning meant “meeting their daily needs” and included
“being healthy, being able to walk, preparing food and chores”. This was echoed in the views of people
living in the UK also, who identified shopping, cleaning, preparing meals, caring for animals, taking
medications, keeping hospital appointments and “just getting up in the morning” as key contributors
to the term functioning for them.
Social Engagement
Socialising was also an important aspect of participants’ daily lives and appeared to contribute to a
sense of independence and motivation. “Going to the daycare centre” and “going for coffee” were
considered daily functions by participants in GR, while meeting new friends instilled a sense of
excitement and motivation. However, there was air of trepidation among Greek participants who were
fearful that friends may abandon them or gossip about “lack of order in the home”. Participants in the
NL agreed that it was important to keep engaged with news, books, people and conversations.
Interests & Other Commitments
There was a clear narrative throughout that function also incorporated involvement in personal
hobbies, while others were actively involved in family/community commitments. Many members of
the focus group in the UK were caring for children and grandchildren and one man was an active
member of many different social committees, which necessitated “writing reports on the computer”
and attending meetings. Interactions with family (e.g. watching grandchildren) was also cited as an
important functional domain among those in NL, who were eager to keep involved due to the “positive
energy”. Other extracurricular activities referred to included watching television, and completing
word searches and coloring books.
3.2.2 Impact of disease on function
“Anyone who is a bit ignorant to it will say oh it is about losing your memory, but it is so vast isn’t it,
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really is?”
Physical, Social and psychological Impact
The following section explores the physical and social functional changes experienced by participants
and the psychological impact of these challenges. Coping strategies employed to deal with these
challenges were also explored by participants across Europe.
There was a general consensus that a diagnosis of MCI or mild AD dementia had both a physical, social
and psychological effect on participants’ quality of life, with participants wishing to “take all the
necessary steps to face it” and eager to strategise to face the consequences of MCI. Conversely, a
participant in the UK stated “No I am sort of quite happy with my life”, while participants in the NL
identified that things are still “going-well”. However, they did indicate lack of foresight on how they
may react in the future and how priorities may change as the disease progressed. Participants in the
UK acknowledged that the environment can be impactful, “it is the situation you are in that makes
things harder” and challenges are often task-specific “brain starts thinking can I cope with this”.
Overall, there was a positive sense of altruism among participants, who despite their own personal
journeys were motivated to help others with the same condition.
“Using a computer is a very procedural activity. I find I can no longer do procedural things” were the
words of one participant in the UK who reaffirmed this statement by providing an example of re-
sorting numbered pages as specifically challenging. Discussions on the frustration of short-term
memory deficits dominated the conversation among participants: “Everything a lot slower now as
well”. Changes in driving was of particular importance among for those in the UK and the NL, with
some experiencing getting lost while driving and others recognising that reaction times can be
affected. While many identified it as a major source independence, being safe of the roads was of
primary concern and the processes to determine this were discussed (i.e. getting licences safely
renewed). Table 4 provides a list of functional challenges commonly experienced by participants
across each site, secondary to early signs of memory decline.
Table 4 Common challenges experienced by participants with MCI or mild AD dementia
Driving – getting lost, sense of direction Cooking – safety issues
Using a computer Appointment/Event recall
Navigational problems Engaging in telephone conversations
Word finding skills Temperament Issues e.g. loss of patience
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Difficulties using a phone Managing finances e.g. taking card from ATM
Mobility Finding personal belongings e.g. keys
Loss of short-term memory Loss of focused task execution
Numerical Recall e.g. pin numbers Hosting social interactions
Writing Lack of motivation
Social Interaction Speech difficulties
Personal care e.g. forgetting to shower Retention of TV show plots, documentary
information
Time Orientation (e.g. Day and Night)
The loss of word-finding skills was a big issue for communication among participants. Forgetting
favorite songs was also a major cause of anxiety in GR, which was also shared by a participant in the
UK who stated singing was “not affected by the disease but now need a screen to remember the
words”. Feelings of anxiety were also expressed among those with MCI due to AD or mild AD dementia
in the NL as things that go “wrong” aren’t always that bad, but “switching quickly’” to find a new
solution becomes a real challenge. This can create panic, which is worse than the thing what went
wrong in the first place.
The following quotes provide an insight into the change in temperament experience by many,
especially feelings of frustration and a loss of patience:
“My patience is a lot less now and everything now”
“I know it sounds awful but it is hard to tolerate people who haven’t got my condition
when they are doing something exactly the same, sort of saying why are they not doing it
when I have double the problem you got”
“Frustration that you can’t do what you used to be able to do and you feel you are less of
a person for it, that’s how I feel”.
Coping strategies
“If I didn’t keep myself busy, I would be even worse off”
Despite the frustrations with short-term memory deficits, participants had developed unique coping
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strategies, expressing isn’t it “amazing how we can adapt”. Social engagement was a common point
of conversation across groups with a focus on the difficulties but also the importance of social
interactions to “keep brains working”. Attending day centres was deemed crucial in GR, with an
acknowledgment that walking was important for health and to maintain independence to leave the
home. Practical coping strategies to alleviate symptoms were also voiced in the UK. “I keep track of
everything I do”/ “A lot of prompting is good and then things come back, oh yeah” which included use
of a whiteboard/diary to recall or plan activities (e.g. hospital appointments) but these strategies were
not always successful.
Participants in the UK also agreed that written/visual form was the preferred mode of communication
(e.g. e-mail/texts/Skype) as it facilitates memory recall, with many expressing adversity to telephone
conversations. “I just don’t like talking to someone on the phone” Avoiding phone conversations was
often a social coping mechanism rather than practical challenge. “A lot of my stuff is done via e-mail.
I find it quite hard to be sociable…nothing to talk about as I can’t remember what I have been doing or
what I have been up to. I remember some of it but there’s a lot I don’t remember”.
One man in the UK cited singing as a way of relaxing when experiencing low mood and stressed that
it was “important for people with dementia to have a focus in life” and a “pick me up”. Family support,
including grandchildren, was also acknowledged across groups but a fear of becoming a burden was
also of concern for some participants. One participant in the UK also mention safety concerns when
cooking and as a result had stopped using the cooker to avoid burns.
3.2.3 Monitoring Function
“I have no idea about my rate of decline and if you could come up with something that could monitor
how my cognitive function was changing I’d find that really useful”
There was a general acceptance to the idea of monitoring function across groups. The importance of
assessing daily functions was explored by participants in GR who recognised it as a tool for “self-
checking” and “self-control”, and as a “mental exercise”. One participant noted that when they
neglected to assess themselves, they felt angry and indifferent, while another felt it important as “who
else is going to know about me”? Similarly, those in the UK believed that it may help to know how
cognitive decline is progressing or to receive positive feedback if improvements were being made, but
it was also recognised that may not “be for everyone”.
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3.2.4 Sorting Task
“The ones that I am starting to find more difficult now are the ones that I want to watch more closely
and get more information on”
The results of the sorting activity for participants with MCI or mild AD dementia are presented in Table
7, representing the domains that people felt were the most, fairly and the least important to
potentially monitor. Of the 20 participants who took part in the focus groups across Europe, 17 people
(85%) agreed that “keeping track of current events, remembering appointments, family events,
medications” was very important to monitor. This was followed closely by “walking or changes in
walking”, as 75% of participants (n = 15) felt that tracking this ADL functional domain was pertinent.
“Sleeping” and “finding the right words” functional domains also scored highly with 70% of
participants categorising them as very important to monitor. Although “misplacing objects” (n = 10),
“maintaining social roles” (n = 9) and “understanding the plot of TV shows, books, news or
conversations” (n = 10) ranked highest as fairly important domains, these figures only represent the
views of 55 % or less of participants. Sixty percent of respondents (n =12) classified “difficulties at
work” as not all important to measure, while 9 participants recognised that “learning new skills” and
“driving” were not at important to potentially monitor. Finally, “managing finances” also ranked highly
as another not at all important functional domains (n = 8). Appendix 3 presents the data with very
important and fairly important domains combined and shows the percentages of respondents for each
task, per country. Not at all important data is also presented in Appendix 3.
3.2.5 Role of Remote Monitoring Technology (RMT)
Previous/Current Exposure to technology
“I think technology does help people like ourselves”
There was a general recognition that technology already played a helpful role in peoples’ lives, with
computer and mobile phone use the most widely used devices. Table 5 demonstrates the variety of
technologies already in use, as mentioned by those with MCI or mild AD dementia across Europe.
There were mixed acceptability reports on the current use of computers and mobile phones among
participants, with as some who “hate computers and buttons” and others recognising the caller ID
history on mobile phones can “make things easier as a tracking exercise”. Location sharing, via maps
on a mobile phone, also allowed a participant in the NL to be guided home remotely by their partner.
A man in the UK identified that there was a need to develop a mobile phone for people with a diagnosis
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of AD, while those in the NL felt that mobile phones were important for communication and as a
support tool. Participants in GR noted that mobile phone use was fairly important, but they could “live
without it”. Re-entering device protection passwords can be a huge source of frustration, with another
participant suggesting that using biometrics as passwords could be a potential solution. It was also
voiced that going from device to device (IPAD to phone to laptop etc.) can be very confusing and not
intuitive. Difficulties retaining patience with entering details, checking boxes for data protection etc.
were relayed. Two participants in GR had previous exposure to wearables/smartphones as part of
another study and found they “felt better with the watch”, which made them feel secure since it
measured everything (steps, sleep, distance) and caused no irritation. This sense of security was also
mentioned in NL, as people felt secure when using location sharing as their partner then knew their
location. However, one person in GR said: “I would never buy the device as I am not keen on technology
in general”.
Table 5 Examples of currently used technologies
Phone Apps e.g. parking, train,
maps & location sharing
Pendant Alarms
Activity Monitors e.g. Fitbits,
apple watch
Artificial Intelligence devices
e.g. Alexa
Computer - auto correction
Mobile Phones
Potential Acceptability of RMT
In the NL, moderators introduced the concept of passive monitoring technologies with a device to
monitor gait/walking speed as an example. Overall, the group had no difficulties with this type of
technology. Active monitoring (e.g. a questionnaire) was also explored and deemed acceptable
although skepticism was voiced regarding the practical application of active requests to input data
(e.g. entering a start and end time of having dinner) and how this may be of value. Something with a
targetable aim was suggested as acceptable in the UK e.g. Fitbit step count. However, it is important
to note that signs of apprehension were also indicated “If I can do it and it is right I want to do it but
if I get it wrong I might not want to know” when the concept of monitoring symptoms using RMT was
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explored among participants in the UK. Participants in the NL also stressed that the frequency (e.g.
daily vs weekly) of active monitoring tools should also be considered to reduce participant burden but
also that flexibility regarding the timings of administration should also be incorporated. Home
monitoring sensors were explored in the UK and while there were initial concerns regarding the set-
up, process and maintenance required, there was general acceptability if simple and unobtrusive.
There was obvious resistance to the suggestion of camera monitoring devices cross nationally with a
participant in the NL deeming it “a bridge too far: you are ‘different’ from everyone else by carrying a
camera, even if the camera was virtually invisible”, while a participant in the UK stated it would be a
“nuisance factor”. It was clear from discussions that participants were completely averse to any
device, which may indicate impairment or potential deficits, such as a neck worn camera. “You are
also potentially advertising the fact that you have a problem that you might not want people to know
about”. There were mixed views regarding RMT use when sleeping. The importance of the potential
interpretation of outcomes was also explored, with a participant in the UK suggesting a programme
period for 2 -3 months and “if useful would continue”. Those in GR saw technology as a potential
positive influence, providing motivation and “I can see no cons/obstacles”.
Potential Applicability
“I think you need to make the technology applicable to the problems we are experiencing at the
moment”.
Each group touched upon areas of potential use that they felt RMT may have a beneficial role to play.
Table 6 summarises some of the ideas generated by people with MCI or mild AD dementia.
Table 6 Suggested Uses for RMT
Prompts of Appointments e.g. doctor/dentist Parking Apps–maintain driving independence
Monitoring cognitive decline Light sensors reduce symptoms
Brain training tasks Temperature tracking
Personal Care Reminders Blood Pressure
Medication Reminders Sleep Tracking
Notification of TV Show – plot aids Social media – to improve social engagement
Driving – hard breaking, responses times, More timely/accurate diagnosis
distance
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Required Characteristics
“I don’t want lots of different bits of technology doing the different things, as that just adds to the
complexity”.
Simplicity of design and user-friendliness were the key attributes of potential RMT of utmost
importance to all participants. The universal exchange of terms such as “easy to bring along”, “easy
to use”, “unobtrusive” and “comfortable” throughout groups provided a clear directive. Wrist devices
were preferred by most and should be unobtrusive and comfortable. Discreetness was also a common
theme with those in the NL feeling that it should look “normal” to prevent stigma while those in the
UK were enthused about devices “everybody is using” such as wrist worn devices. While a participant
in GR stated, “regarding my health I would consider any cost, any inconvenience regarding size, battery
life”, this did not represent the views of the majority.
With regard to the charging requirements, it was recognised that getting the balance right between
collecting data and preserving battery life was essential. It was generally agreed that daily charging is
too cumbersome, and would have the added complication that the device would not be measuring
during this period also.
Adaptability was finally explored by those in the UK and technology “Needs to be smart enough to be
tailored to where somebody is in the progression of the disease”. In the early stages, people wish to
be enabled but not given all the answers “give us stuff that helps us to carry on doing things for
ourselves” but as things progress more guidance and direction are sought with eventual, probable
instruction in the latter stages suggested.
Data Privacy/Security
“Who’s going to see it, who’s going to use it, who’s going to interpret it?”
The issue of privacy and IT was an important concern for participants in the UK given recent media
reports of data breeches. One woman was fearful that her bank account could be accessed or that she
may be coerced into signing-up to an unwanted subscription, if she were to engage with technology
despite its potential benefits.
“I started retreating to safety…by that I mean things like, I am very worried about technology now
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although… I’ve been involved with IT throughout my life I feel that it is moving onto a stage now that
I no longer understand how it works and I am very worried about its security and its trustworthiness
and so I don’t go there with a lot of things that I think could be very helpful to me”
However, there was an appreciation if you put layer after layer of security you will reduce the usability
of technology and so getting the balance right was pertinent. In contrast, while one participant in the
NL did raise concerns about the use of the information by government agencies (e.g. using the
information for allowing the extension of a driver’s license), overall, this particular group was not
concerned about privacy of their data as long as it was used for “medical purposes”. Participants in
the NL and the UK had a keen interest in accessing their data personally, as questions were raised as
to what data would be generated and how the data would be used.
“So what’s coming out the other end is as important, that it’s usable, meaningful and actionable”.
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Very Important Fairly Important Not at all Important
UK NL GR Total UK NL GR Total UK NL GR Total
Reading and Writing 0 4 5 9 5 0 3 8 2 0 1 3
Managing finances, 2 2 3 7 2 2 1 5 3 0 5 8
(e.g. writing checks, online
banking, tax records)
Navigating when traveling 5 3 3 11 1 1 5 7 1 0 1 2
to a destination, outside of
neighbourhood either by car,
bus, walking, finding car in
parking lot
Organising self-care 1 1 9 11 3 3 0 6 3 0 0 3
Household management, 4 2 4 10 2 2 4 8 1 0 1 2
running errands & shopping
e.g. preparing a meal in
logical order, remembering
to turn off appliances,
tidying, buying
clothes/groceries
Planning and completing 4 2 6 12 2 2 2 6 1 0 1 2
tasks
Learning new skills, 1 1 1 3 4 1 3 8 2 2 5 9
e.g. new technology
Understanding the plot of TV 1 3 1 5 3 1 6 10 3 0 2 5
shows, books,
news or conversations
Finding the right words 5 3 6 14 2 1 1 4 0 0 2 2
Page 18 of 42
Table 7 Results of sorting task for participants with MCI or mild AD dementia (Group a), separated by country. UK n = 7, NL n = 4, GR n = 9806999 – RADAR-AD – D3.05
Difficulties at work 2 0 2 4 0 0 4 4 5 4 3 12
Driving or accidents whilst 4 4 0 8 0 0 3 3 3 0 6 9
driving
Sleeping 3 2 9 14 2 2 0 4 2 0 0 2
Walking or changes in 2 4 9 15 3 0 0 3 2 0 0 2
walking
Using a computer or phone 5 3 1 9 1 1 3 5 1 0 5 6
Misplacing objects 4 1 5 10 3 3 4 10 0 0 0 0
Keeping track of current 6 3 8 17 1 1 1 3 0 0 0 0
events, remembering
appointments, family events,
medications
Remembering an event or 4 1 6 11 2 3 3 8 1 0 0 1
fact from a few days earlier
Social interaction 2 3 4 9 3 1 3 7 2 0 2 4
e.g. taking part in
conversations
Motivation, signs of apathy 2 2 1 5 3 1 4 8 2 1 4 7
or withdrawal
Maintaining social roles 3 1 3 7 2 3 4 9 2 0 2 4
Using a mobile phone 4 4 2 10 0 4 5 2 0 3 5
Continued Table 7 Results of sorting task for participants with MCI or mild AD dementia (Group a), separated by country. UK n = 7, NL n = 4, GR
n=9 Page 19 of 42806999 – RADAR-AD – D3.05
3.3 Perspectives of those who support/supported an individual with mild AD dementia
When data was combined from participants who support or have previously supported a person with
AD dementia from the UK, the NL and GR the following 5 themes emerged i) meaning of function, ii)
impact of disease on function, iii) interpersonal Relationships iv) monitoring function, v) role of
technology. Sub themes for each overarching theme are explored in detail below.
3.3.1 Meaning of Function
“Do you as a carer or family feel confident that the person can go around their house, their apartment
by themselves? Do they know what the functions are in these rooms, what they are there for. Do you
know what the bathroom is there for … that’s what I call day-to-day functions?
There was a clear sentiment throughout all group reports that function for those caring for a person
with AD dementia fell predominantly under the domain of habitual survival skills, as these nurtured a
sense of independence and security regarding safety for the carer. Social engagement and hobbies
were also mentioned but did not take precedent, over basic daily tasks.
Habitual survival skills
“I am laughing because the thing that springs to mind with X, he must be able to make a cup of tea”
Accomplishment of daily house chores, locating household items, remembering to eat and drink
water, food preparation, washing dishes, sleeping, movement without assistance were all mentioned
as examples of day to day functions across countries. All those in GR cited an uninterrupted night’s
sleep as an important daily function “the most important thing is to have a good sleep otherwise the
day after is a nightmare”, acknowledging the effect it can have on a person’s mood and behavior and
cognitive function. Those in the UK agreed about the importance of sleep as a source of rest for both
parties. Safe household management was important as again it gave a sense of reassurance to the
carer for when they were not present.
Social Engagement & Hobbies
Communication with the caregiver was an important function in GR, while those in the NL stressed
the importance of social contact as a source of stimulation and to improve quality of life, with one
person mentioning the benefits of a group choir. Talking “about” patients rather than “with them”
was an important social consideration as often a source of upset for people with AD dementia. Carers
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in the UK and the NL both referred to the importance of driving as a function and the potential dangers
associated with it.
3.3.2 Impact of disease on function
Physical, Social and Psychological Impact
“He lost any continuity of thought and action; he couldn’t follow things on the telly.”/ “He couldn’t
hold onto anything in his brain, he had lost control of his thinking”
Participants in the NL noted “strange things happening”, with “strange reasoning,” when describing
the initial presentation of symptoms, but there was a resistance to acknowledging these changes “I
explained it away, you do explain away don’t you? You find a reason as it doesn’t even occur to you
that it is dementia”. Denial and blaming others was common across groups “You must have exchanged
the taps” or “someone’s stolen the biscuits” were cited in the NL and the UK as examples of this, with
many carers sharing the futility of confronting these issues. Table 8 provides an oversight of the
common difficulties experienced by those with AD dementia, from the perspective of those who
support or supported them. A deep sense of loss was expressed by a participant in the UK when
detailing the changes she had noticed: “I suppose that was the essence of him and that was going”.
Table 8 Common Challenges experienced by participants with a diagnosis of AD dementia
(Carer Perspective)
Difficulties concentrating Computer/Mobile phone Use
Safe Cooking e.g. leaving the gas on Misplacing Objects
Food preparation/Recollecting recipes Driving Issues e.g. breaking red light, finding car
Apathy and Irritation – losing interest, lack of Managing finances – loss of control
motivation
Taking Medications Denial
Initiating Conversations Making cup of Tea
Speech and word findings skills Orientation around Home
Name recall, failing to recognise neighbours Inappropriate eating mannerisms
Losing friends Safety in home – trying to jump from windows
Anger Issues Forgetting events/schedules
Communication Issues Short-term memory loss
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Navigation Problems/ Lack of sense of direction Following a TV plot
Frailty Careless DIY
Decline in painting ability Personality changes
Time Orientation
Coping strategies
Coping strategies employed included keeping active through walking to alleviate patients’ anxiety and
stress. It was also suggested that it could prevent long-term frailty. While some in GR acknowledged
that the person they support “is not in a position to understand it” another stated, “She understands
the situation but doesn’t want to accept it”. This fear avoidance technique also emerged among carers
in the UK “whether subconscious or not he did not want to admit that he couldn’t use the microwave
anymore”. Another carer concurred, explaining that her husband started to withdraw socially to mask
memory issues “I suppose he didn’t want us to see what was failing – I think”, while another divulged
that his mother stopped going to church as she stopped remembering people and “wasn’t at her best”.
Despite this social withdrawal, the importance of continuing with social activities was highlighted, with
walking and skills learned at day-centres being important too. Practical coping mechanisms such as
post-it notes were mentioned in the UK but the carer recognised that you have “to draw the line with
this”. Another participant changed from gas to induction hob cooking, while another mentioned
changing swivel taps to push taps instead.
3.3.3 Monitoring Function
Caregivers generally welcomed the idea of monitoring function in people with MCI or mild AD
dementia. Those in GR felt that assessing daily function was important to inform the care giver on
“what the patient did the day before”, which may inform sleep activity. It was also recognised as a
useful resource to communicate patients’ difficulties to a doctor or “to cross check-whether he took
his medication”. Carers in the UK especially welcomed the idea of tracking function decline. They were
frustrated with the current lack of information provided, regarding functional prognosis. Some had
resorted to seeking answers independently, which did provide comfort:
“As things are falling apart you can’t believe it is happening and it is bit of an anchor.”/ “I’ve always
preferred to know – but that is tricky isn’t it. People ought to be told more about what’s coming so that
they can learn how to face it”.
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3.3.4 Sorting Task
The results of the sorting activity for participants who have supported a person with a diagnosis of AD
dementia are presented in Table 12, representing the domains that people felt were the most, fairly
and the least important to potentially monitor. Of the 19 participants who took part in this exercise
across Europe, 14 people (74%) agreed that “sleeping” was very important to monitor. “Walking or
changes in walking” came second with 58% of participants (n = 11) expressing that this was a very
important ADL functional domain to track. Just over half of participants (n =10) believed that a
measure of “social interaction” and “monitoring self- care” would be also be very important to note.
“Misplacing objects” and “remembering an event or fact from a few days earlier” were both equally
ranked highest as domains of fair importance (n = 9). While “learning new skills” and “managing
finances” were deemed not at all important by 68% of participants (n =13), “driving” followed in
second place with 63% of participants rating it not at all important to monitor. “Using a mobile phone”
and “difficulties at work” were also recorded as not at all important by over half (58%) of those who
took part in the activity. Appendix 4 presents the data with very important and fairly important
domains combined and shows the percentages of respondents for each task, per country. Not at all
important data is also presented in Appendix 4.
3.3.5 Interpersonal Relationships
“The carer and the person with dementia they are in it together and as long as that is recognised then
it only be helpful”
Another emerging theme among carers in all countries was the high level of dependency that patients
had on carers to support them. “For carers it’s very heavy and can have a big impact on the overall
family situation”. A participant in GR stated “she asks me to help with anyway possible”, while a carer
in the UK recounted that she had to stop leaving the house. Her husband was always furious that she
had left without telling him, despite her leaving notes to remind him.
The psychological burden of dealing with altered behavioural issues (e.g. anger, irritation) were often
experienced by both the carer and person with mild AD dementia. “If only somebody had told me that
X would never learn anything new again, I wouldn’t have been so angry with him” were the sentiments
of a friend of a participant in the UK. One person in GR had “adapted their scheduled to be able to
assist him”. Those in the NL recognised that functional priorities would be different for someone who
has support of a partner living in the same household. Similarly, a participant in the UK recognised
Page 23 of 42806999 – RADAR-AD – D3.05
that his parent-son relationship was very different to caring for a partner or spouse and his mother
also felt patronised when he reminded her of things “don’t tell me what to do”, due to a lack of insight
into her memory loss.
Educating the carer was also a common theme in the UK and the NL. One participant in the NL stated
that “prior knowledge makes a difference, you recognise the symptoms” which was echoed by a carer
in the UK who stated that RMT would have to be accepted by the carer also to be successful.
Finally, the issue of caring for a patient at home came to prominence in both the UK and in the NL.
While one carer in the UK regretted promising her husband that she would always care for him at
home, before knowing the likely progression of the disease a participant in the NL said “We talk a lot
about living independently/ at home as long as possible. But not everybody [patient] wants that! It’s
important to listen to the individual and also accept when it is no longer meaningful and doesn’t
improve QoL of patient to live at home.”
3.3.6 Role of Remote Monitoring Technology (RMT)
Previous/Current Exposure to technology
“Learning new skills/technology – irrelevant because there were more important difficulties that you
had to address”
There was limited exposure to technology use among carers across Europe. Carers in GR were
cognisant with wearable technologies but had not used them. Mobile phones were only “fairly
important” as “they can live without them” and many were incapable of using computers. One
participant in the NL referred to a location app that promoted a sense of security and independence
for the person with AD, when out alone. Participants in the UK had experience with pendant alarms
however felt that they were unsuitable for people with memory issues as required interaction from
the user and disembodied voices could be frightening. Table 9 gives an overview of previously used
technologies by those who support or supported a person with mild AD dementia.
Table 9 Examples of previously used technologies
Mobile Phones
Location App
Safely Alarms e.g. monitor water levels
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