Carers Using Assistive Technology in Dementia Care at Home: A Mixed Methods Study

Sriram et al.
BMC Geriatrics (2022) 22:490

https://doi.org/10.1186/s12877-022-03167-4
RESEARCH Open Access
Carers using assistive technology

in dementia care at home: a mixed methods
study
Vimal Sriram*, Crispin Jenkinson and Michele Peters
Abstract
Introduction: Informal carers support persons with dementia to live at home, even with deteriorating physical, social
and cognitive issues. This study aims to examine the experiences and impact of Assistive Technology (AT) on carers,
providing care for a person with dementia.
Methods: This is an explanatory sequential mixed methods study. The quantitative phase was an online and postal
survey using the Carers Assistive Technology Experience Questionnaire and Short Form-12 (SF-12) questionnaire,
with carers of persons with dementia in the UK, who used AT. The qualitative phase involved in-depth telephone
interviews with a purposive sample of survey respondents and was analysed using hermeneutic phenomenology to
develop, compare and explain the findings of the survey.
Results: The survey included data from 201 carers. Smartphones (45.5%) and tablet computers (45.0%) were the
most frequently used AT. Multiple AT were used in the care of persons with dementia predominantly for safety
(78.5%), communication (66.0%), and reminders (62.5%). The SF-12 indicated that carers in the 46–65 age group and
carers who were not extremely satisfied with AT had lower mental component scores whilst carers who lived with the
person with dementia and older carers had lower physical component scores. Twenty-three carers participated in the
interviews, and 5 themes with 14 sub-themes were identified. The interviews helped confirm data from the survey
on the impact of AT on the physical, mental and social wellbeing of the carers. It helped describe reasons for satisfac-
tion with AT; how AT was used in daily life and strengthened caring relationships and how wider support systems
enhanced the care of a person with dementia using AT.
Conclusions: This study describes the use of AT in the real-world context. AT supplements the care provided to peo-
ple with dementia in the community. Appropriate use, access to AT and abilities of the carer can enhance the support
provided through AT to both carers and the person with dementia.
Keywords: Assistive Technology, Dementia, Carers, Mixed methods
Introduction
Dementia is a public health priority [1]. It is a progres-
sive illness, and even if functional challenges impede
a person’s ability to live independently, persons with
dementia want to live at home [2]. Informal carers (fam-
*Correspondence: [email protected] ily, friends and neighbours), hereafter referred to as car-
Health Services Research Unit, Nuffield Department of Population Health, ers, play a crucial role in supporting people living with
University of Oxford, Richard Doll Building, Old Road Campus, Oxford OX3 dementia in the community. Caring for a person with
7LF, UK
© The Author(s) 2022. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which
permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the
original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or
other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line
to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory
regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this
licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativeco
mmons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Sriram et al. BMC Geriatrics (2022) 22:490 Page 2 of 19
dementia is not a static process [3] and Assistive Tech- were provided with a participant information sheet
nology (AT) is suggested as one way of providing support (additional file 1) and interview participants provided
to the person with dementia and their carers [4, 5]. AT informed written consent (additional file 2) prior to the
can be defined as: “any item, piece of equipment, product interview. No personal identifiable information of par-
or system that is used to increase, maintain or improve ticipants is reported in this paper. This study is part of
the functional capabilities and independence of people a larger research project which has a patient and public
with cognitive, physical or communication difficulties” advisory group that meets twice a year. This group con-
[6]. Carers usually make the decision on purchase, sup- sists of two carers of persons with dementia and a per-
port maintenance and decide on abandonment of AT son with dementia (all living in England). This group
[7] yet most research studies have focused on the use reviewed the final version of the CATEQ and informed
of AT from the perspective of persons with dementia the interview guide questions. This group has also com-
[8–10] or the use of AT to support them in institutional mitted to support dissemination of study results to other
settings [11, 12]. Carers could be using the AT together patient involvement groups and their wider networks.
with the person with dementia (e.g., safety alarms, tab-
let computers), independent of the person with demen- Methods
tia (e.g., video monitoring systems, GPS trackers) and/ Study Design
or carers could be looking after someone with demen- Sequential explanatory mixed‑method study:
tia, who uses AT independently of the carer (e.g., elec- The combined use of quantitative and qualitative
tronic medication dispensers, smart phones). While AT approaches would provide a better understanding of
is viewed as a pervasive solution to supporting carers and carers’ experiences and impact of using AT than either
persons with dementia to live for longer in the commu- approach alone. A better understanding can be obtained
nity [13–15], few attempts have been made to understand by combining survey (quantitative) data results with
the experiences of carers, who use and support the use interview (qualitative) data to thereby enhance the
of AT. Carers make, and continue to make, decisions on validity of any inferences that are made [19]. Collec-
the purchase and maintenance of AT [16]. Thus, involv- tion of quantitative data and analysis of the results fol-
ing and including carers and taking account of their lowed by collection of qualitative data and analysis of
views and experiences with AT should form an integral the results and “mixing” the analysis of the qualitative
part of providing good care for a person with dementia data to explain the findings from the quantitative data is
within their own home [17]. Knowledge of carers’ expe- called the sequential explanatory mixed- method design
rience with AT, which types of AT carers use and prefer [20–22].
and how they use the AT as well as how it helps them, We carried out a survey among carers of persons
could provide information to those who procure health with dementia in the UK [16]. This provided a broad
services (commissioners), health and care professionals understanding of the experiences of carers using AT.
and charities who prescribe/recommend AT, and indus- This survey provided information on the current use,
try partners who develop new AT. Understanding carers’ satisfaction and impact of AT use among carers of per-
perceptions of AT and the impact of these ATs on carers sons with dementia. The survey was conducted using
is important to continue to provide support for persons the Carers Assistive Technology Experience Question-
with dementia and carers. naire (CATEQ) [23] and the SF-12 (version 1) [24].
Study objectives: The SF-12 contains items covering physical function-
This paper in addition to describing the results from ing, social functioning, role functioning (physical and
the survey [18] provides context to the findings, by mental), vitality, bodily pain, mental health and general
describing: health. The SF-12 generates two summary scores: The
Physical Component Score and the Mental Compo-
1. The experience of carers in using AT in the care of nent Score (PCS and MCS respectively). The PCS and
persons with dementia and. MCS are generated using norm-based methods and are
2. The impact of AT on carers well-being and daily standardised, using scores from the general population
life. [24, 25], to have a mean of 50 (SD 10). A higher score
indicates better quality of life. To gain better insight
into these findings, interpret them and to enrich the
Ethics and patient and public involvement understanding of the experience and impact of using
This study was approved by the University of Oxford AT on carers, quantitative data collection and analysis
Central University Research Ethics Committee (Refer- was followed by collection and analysis of qualitative
ence number: R57703/RE001). All potential participants data using semi-structured interviews with a sample
Fig. 1 Flowchart of mixed methods design for carers using assistive technology in dementia care study
of survey participants to help explain the quantitative Participants

data. Survey participants were recruited using online data-
Integration in a mixed-method study may take place bases via the Join Dementia Research website [27],
at more than one stage of the research process, using a Oxford Dementia and Aging Research (OxDARE) [28]
wide variety of strategies. For this study, integration of and through health care professionals who prescribe AT
the quantitative and qualitative phases of the study was for persons with dementia. Participants were carers of
made at recruitment, data collection and data analysis persons with dementia based in the United Kingdom.
stages. Data collection for this study took place in sepa- The inclusion criteria were: adult carers—family, friends
rate and sequential stages [26] (i.e., quantitative survey or neighbours—providing at least 10 h of care (e.g. shop-
data was collected before qualitative interview data ping, leisure, personal care, finance) per week to a per-
was collected), but the results of the survey informed son with dementia who lives in their own home, with the
the recruitment of carers and questions that were used carer living together with or away from the person with
for data collection in the interviews. At the analysis and dementia; and carers needed to have used at least one
interpretation stage, integration was achieved through AT device at home in the previous year. For the inter-
discussion of how the qualitative findings explain and views, an email with the participant information sheet
elaborate upon the findings from the quantitative study [Additional file 1] was sent to survey participants who
and discussion of implications of findings from both gave consent to be contacted. From those who replied
studies for future research and support for carers and expressing an interest in participating, a purposive sam-
persons with dementia (Fig. 1). The cross-sectional ple reflecting variations in age, sex, living arrangements,
survey was carried out between April to July 2020. Fol- rurality, and relationship with persons with dementia
lowing the survey analysis, interview questions were were selected for the interviews.
formulated to gain further understanding into car-
ers’ experiences as identified in the survey. Interview Data collection
participants were recruited and interviewed between For the survey, questionnaires were completed and
October – December 2020. returned by post (for those who requested a paper copy)
or by using an anonymous online survey link. Data col- out using the software package NVivo 12 [33] (second
lection for the quantitative study is described in detail step). The data analysis was ongoing throughout the
elsewhere [16]. For the qualitative study, semi-structured period of data collection, this ongoing method allowed
interviews were conducted over the telephone after earlier transcripts to be recoded to reflect new codes. All
gaining consent using postal forms [Additional file 2], the coded units were grouped into themes and underly-
due to the restrictions from the COVID-19 pandemic ing sub-themes (third step). Data collection continued
[29]. The interview focused on caregiving experience, after 20 interviews to ensure no new codes were devel-
the use and impact of AT on carers and on caring for oped and at the twenty third interview, it was concluded
the person with dementia. All questions and prompts in that data saturation was reached.
the interview topic guide [Additional file 3] were open
ended and informed by an earlier systematic review [5], Mixing analysis
qualitative study [7] and the survey [16] and confirmed The themes were developed, compared and interpreted
as meeting the needs for answering the research ques- in context of the survey results [26]. All authors coded
tions by the patient and public advisory group. All inter- selected transcripts independently and met regularly
views were carried out by VS. Demographic data was to discuss and agree ongoing data collection, gener-
taken from the survey responses and confirmed as being ate themes, interpretation and integrating data analysis
accurate with the participant at the start of the inter- with survey results. Reflexivity (the examination of own
view. The background of the interviewer as an Occupa- beliefs, judgments and practices during the research pro-
tional Therapist and consequent interest in the research cess and how these may have influenced the research)
topic was discussed with participants. The participants [34, 35] and integrity of the research process was main-
were not known to the interviewer or the other authors tained by all authors. The authors’ experience and pre-
before recruitment. Trust in the interviewer was built vious research with people with long-term conditions,
by establishing rapport with the participants through including dementia, provided the necessary expertise for
email and prior to answering questions as part of the tel- this research. However, it is acknowledged that this expe-
ephone interview. Interviews lasted between 30–50 min, rience may have influenced the coding and interpretation
were audio-recorded, and later transcribed by a profes- of the themes.
sional transcriber, verbatim with names of participants,
names of the person with dementia, and any towns/cit- Results
ies mentioned in the interviews pseudonymised to ensure Full results from the survey is reported elsewhere [16].
confidentiality. A brief overview of the findings is given here to provide
context. Data from 201 carers was analysed. There were
Data analysis 131 (65.2%) women and 65 men (32.3%) with 1 partici-
Quantitative data analysis pant self-identifying as non-binary and 4 missing val-
Survey data was analysed using IBM SPSS Statistics ues. Participants’ age ranged from 33 to 92 with a mean
version 26. Descriptive statistics were used to exam- age of 62 (SD 12) with most participants between 46
ine the findings from the CATEQ which included types and 65 years (n = 105; 52.2%) followed by participants
of AT used, what the AT was used for, costs of the AT, between 66 and 85 years (n = 74; 36.8%). Participants
perceived value for money and satisfaction with the AT. were predominantly white (n = 186; 92.5%), currently
Bivariate analyses were conducted to examine differences married (n = 158; 78.6%) and with a university degree
in socio-demographic variables between respondents and (n = 127; 63.2%). Participants were children of a person
SF-12 scores. The level of significance was set at p < 0.05 with dementia (n = 110; 54.7%) or a spouse of a person
for all analyses. with dementia (n = 72; 35.8%). Additional participant
Qualitative data analysis characteristics from the survey is described in Table 1.
The data was analysed using Hermeneutic Phenomenol- AT were predominantly used for safety, communication,
ogy, a process outlined by Lindseth and Norberg and oth- and reminders. Multiple AT devices were used in the care
ers [30–32] and used in our previous qualitative study of persons with dementia and the number of AT used was
[7]. Hermeneutic phenomenology focusses on the sub- associated with perceived satisfaction. Carers reported
jective accounts of individuals own experiences in con- that AT helped them reduce effort of caring for a person
text, and thematic analysis seeks to identify and describe with dementia and reduced perceived stress. Additional
topic categories raised by interviewees in describing and support was needed to support purchase and continued
explaining the survey results. VS listened to each of the use of AT, and AT devices were abandoned when the per-
interviews and read the transcripts multiple times (first son with dementia could no longer use them. The SF-12
step). Line by line coding of each transcript was carried indicated carers in the 46–65 age group and carers who
Table 1 Characteristics of survey participants
Sex N %
Women 131 65.2
Men 65 32.3
Other 1 0.5
Living arrangements Living with person with dementia 103 51.2
Living away from person with dementia 98 48.8
Ethnicity White 186 92.5
Indian/Indian British 4 2
Mixed/multiple ethnic groups 3 1.5
Other 1 0.5
Marital status Single 17 8.5
Married/civil partnership 158 78.6
Divorced/legally dissolved civil partnership 22 10.9
Widowed/surviving partner 3 1.5
Highest level of education
Secondary school 8 4.0
College (further education) 58 28.9
Undergraduate university degree 76 37.8
Postgraduate university degree 51 25.4
Other 8 4.0
Annual family income Less than £10,000 7 3.5
£10,001—£40,000 86 42.7
£40,001—£70,000 49 24.4
Greater than £70,000 11 5.5
I do not wish to say 47 23.4
Relationship to person with dementia Child 110 54.7
Sibling 3 1.5
Friend 2 1.0
Neighbour 1 0.5
Spouse 72 35.8
Grandchild 3 1.5
Other 10 5.0
Age (Minimum – Maximum); Mean (SD) 33—92 Years; 61.67 (12.07)
were not extremely satisfied with AT had lower mental results. Additional illustrative participant quotes are pro-
component scores and carers who lived with the person vided in Table 4.
with dementia and older carers had lower physical com-
ponent scores. A summary of important findings from Use of AT
the survey is provided in Table 2. In the survey, carers indicated using a wide variety of
For the qualitative study 23 carers (18 women, 4 men, 1 AT including smart phones, tablet computers and video
non-binary) participated in the interviews. Participants’ monitoring systems. They also reported staggered pur-
age ranged from 51 to 85. Table 3 provides further details chase or use of AT. Some AT devices such as pendant
of the interview participants. alarms and audio books were frequently abandoned as
the person with dementia was no longer able to use them.
Themes a.Staggered purchase and use of AT
Five themes and 14 sub-themes were identified in the Interview participants confirmed that as a person
analysis. We describe the themes from the qualitative with dementia’s needs worsened, AT devices were
interviews and situate them in context of the survey added to support them and as these AT were purchased
Table 2 Findings from the survey: perceived impact of AT

% of responses based on AT currently in use
Not at all helpful A little helpful Quite helpful Helpful Very helpful
AT helps in reducing 8.8 27.2 16.5 25.0 22.5
effort (n = 200)
AT helps in reducing 5 21.1 11.0 23.9 39.0
stress (n = 194)
AT helps in reducing 7.0 19.4 12.0 23.0 38.6
anxiety (n = 200)
AT helps make 7.2 26.4 10.8 30.8 24.8
caring role easier
(n = 198)
AT reduces need for 32.2 11.9 10.0 21.1 24.9
additional paid care
(n = 123)
AT helps reduce 32.5 16.4 7.4 15.7 28.0
harm/potential harm
(n = 198)
Deteriorated a lot Deteriorated a little Not changed Improved a little Improved a lot
Care provided 4.0 3.6 48.3 32.6 11.5
for a person with
dementia changed
(n = 198)
Extremely dissatis- Somewhat dissatisfied Neither satisfied/dissatisfied Somewhat satisfied Extremely satisfied
fied
Overall satisfaction 1.0 1.0 7.5 55.2 34.8
with AT
Less than 5 AT used 1.3 (1) 0 (0) 17.3 (13) 54.7 (41) 26.7 (20)
(N)
Five or more AT 0.8 (1) 1.6 (2) 1.6 (2) 56.0 (70) 40.0 (50)
used (N)
Value df Asymptotic Significance (2-sided)
Pearson chi-square 19.200 4 0.001
Physical and Mental health component PCS MCS
scores
N Mean 95% CI Mean 95% CI
SF-12 Scores 201 49.19 47.75 – 50.63 45.37 43.93 – 46.80
Age Groups < 45 20 54.78 52.53 – 57.02 49.52 45.37 – 53.68
46–65 105 51.62 49.81 – 53.43 43.76 41.70 – 45.82
> 66 76 44.37 41.88 – 46.86 46.49 44.22 – 48.75
p 0.000 0.012
Sex Men 65 49.28 46.67 – 51.89 49.23 47.35 – 51.10
Women 131 49.10 47.32 – 50.88 43.37 41.46 – 45.29
p 0.536 0.002
Living arrangements Living with the per- 103 46.18 43.93 – 48.43 44.69 42.69 – 46.69
son with dementia
Living away from 98 52.36 50.78 – 53.94 46.08 43.98 – 48.17
the person with
dementia
p < 0.001 0.244
Relationship to per- Child 110 51.74 50.08 – 53.51 44.38 42.34 – 46.42
son with dementia Sibling 3 39.13 9.67 – 68.58 52.61 48.80 – 56.42
Friend 2 57.48 44.27 – 70.70 51.75 29.26 – 74.24
Spouse 72 44.86 42.17 – 47.54 46.27 44.00 – 48.54
Grandchild 3 57.80 50.22 – 65.37 49.56 24.03 – 75.10
Other 10 50.59 44.74 – 56.44 44.16 35.45 – 52.88
p < 0.001 0.436
Table 2 (continued)
% of responses based on AT currently in use
Satisfaction with AT Extremely satisfied 70 48.71 46.32 – 51.10 48.26 46.29 – 50.22
Not extremely 130 49.38 47.54 – 51.21 43.94 42.04 – 45.85
satisfied
P 0.720 0.010
Number of AT being Less than 5 AT 76 49.20 46.95 – 51.46 46.16 43.88 – 48.44
used 5 or more AT 125 49.19 47.30 – 51.08 44.88 43.02 – 46.75
p 0.757 0.561
Significance level p < 0.050
PCS Physical Component Score, MCS Mental Component Score
to meet specific needs, the satisfaction with these dementia]

devices were higher.
Ease of using AT
“The clock was one of the first things that I got The ease of using AT had an impact on satisfaction,
because she really struggled with time and day”. continued use or abandonment of AT. This in turn
[Participant 19, Daughter, Living with person with affected the impact the AT had on carers.
dementia] Carers found some AT helped a person with demen-
tia, even when they lived away. This provided the carer
Computers and tablet computers were already in
with a sense of reassurance.
use by carers or the person with dementia and were
adapted to support caring needs. “The tile [object locator] certainly helped so that
remotely we could make them [objects] buzz for her
“Well, I already had the laptop…and she started
and that made it easier to find things”. [Participant
using it for memory [games]”. [Participant 13, Hus-
2, Son, Visits weekly]
band, Living with person with dementia]
However, carers also reported that persons with
Carers had to anticipate future needs of the person
dementia struggled to use AT such as pendant alarms, as
with dementia and added the AT devices as and when
intended.
a need arose.
“she’s supposed to press [pendant alarm] if she falls?
“The increase in [motion sensor] alarms has
But she, she can’t remember what it’s there for. She
gone on as he has deteriorated and that is really
puts it on religiously, it’s like putting on jewellery.
because of the danger of him falling downstairs...
But the twice she has fallen in the house, she’s never
it’s had to be a gradual, a gradual putting-in and
pressed it”. [Participant 10, Daughter, Visits daily]
I’ve still, you know, I’ve still got one or two things,
one or two plugs that I need to change on the Hive Elderly carers who were not used to technology and
[smart home technology] system.” [Participant 17, digital devices, initially struggled with AT and described
Wife, Living with person with dementia] the need for access to support and education.
Some of the AT procurement was constrained due “I think I’ve done extremely well with it [AT] but I’ve
to the carers’ own knowledge of what AT was avail- possibly … It, it would have been useful to have some
able and what devices could support the person with access to education about that”. [Participant 9, Wife,
dementia. Living with person with dementia]
“I think in all honesty I’d have liked to have had Problems using AT:
that one [CCTV cameras] before but didn’t really While most of the AT devices that were currently in
know what would be suitable and again, lacked the use were perceived as being user-friendly, carers also
technological know-how to say how do I sort this reported problems in the AT themselves or in their
out.” [Participant 9, Wife, Living with person with design. Some of the AT equipment such as electric beds
Table 3 Characteristics of interview participants
ID Age Range Gender Relationship Ethnicity Living arrangements Assistive Technology PCS Score MCS Score Type of dementia Years/months since
used diagnosis
1 71–80 Female Wife White Living with person with Laptop; cooker alarm; 23.11 52.03 Vascular dementia Two years
dementia smart phone; stove
timer
Sriram et al. BMC Geriatrics
2 51–60 Male Son White Weekly visits Audio books; automatic 57.23 55.92 Alzheimer’s dementia Eighteen months
night lamp; dementia
clock; GPS tracker; large
button telephone;
object locator; pendant
alarm; picture button
telephone; smart
(2022) 22:490
phone; web camera

3 71–80 Female Wife White Living with person with Audio books; laptop; 54.37 42.29 Alzheimer’s dementia Three years
dementia dementia clock; falls
alarm; GPS tracker;
pendant alarm; tablet
computer; Alexa; web
camera
4 51–60 Female Daughter White Living with person with Automatic night lamp; 38.48 22.51 Unsure Ten years
dementia laptop; smart gas meter;
smart lights; tablet
computer; web camera
5 71–80 Female Wife White Living with person with Electronic reminders; 39.90 35.17 Alzheimer’s dementia Four years
dementia large button telephone;
smart phone; tablet
computer; video com-
munication
6 61–70 Female Daughter White Living with person with Falls alarm; CCTV; GPS 57.12 26.40 Mixed dementia Eight years
dementia tracker; door alarm;
memory clock; move-
ment sensor; picture
button telephone; web
camera
7 81–90 Male Husband White Living with person with Laptop; dementia clock; 52.83 47.95 Alzheimer’s dementia Three years, six months
dementia community alarm;
smartphone; video
communications
8 61–70 Female Daughter White Living with person with Laptop; memory clock; 55.91 55.86 Mixed dementia One year
dementia tablet computer; video
communications
Page 8 of 19
Table 3 (continued)
used diagnosis
9 61–70 Female Wife White Living with person with Automatic night lamp; 53.95 47.56 Mixed dementia Six years
dementia baby monitor; laptop;
cooker alarm; dementia
clock; smart phone;

stove timer; video
communications; web
camera; satnav in car
10 61–70 Female Daughter White Daily visits Electric bed; dementia 62.47 28.33 Alzheimer’s dementia Four years
clock; falls alarm; GPS
(2022) 22:490
tracker; Large button

telephone; simple radio
11 61–70 Female Wife White Living with person with Electric bed; memory 34.54 47.69 Vascular dementia Three years
dementia clock; pendant alarm
12 61–70 Female Daughter White Visits every three weeks Electric bed; stand aid 50.91 50.12 Unsure Four years
13 71–80 Male Husband White Living with person with Baby monitor; laptop; 55.50 57.82 Fronto-temporal Eleven years
dementia electric bed; smart gas dementia
meter; smart phone;
video comms; Hoist;
Wheelchair; WAV
vehicle
14 61–70 Female Daughter White Daily visits Laptop; dementia clock; 57.99 43.30 Alzheimer’s dementia Seven years
GPS tracker; large but-
ton telephone; memory
clock; pendant alarm;
smart gas meter; smart
phone; smart watch;
video communications
15 51–60 Non-binary Friend Other Daily visits Laptop; electronic 56.44 49.98 Parkinson’s Dementia One year, three months
reminders; large but-
ton telephone; video
communications; web
camera
16 61–70 Female Wife White Living with person with Assistive robot; 24.31 35.38 Alzheimer’s dementia Four years
dementia automatic night lamp;
laptop; electronic
reminders; GPS tracker;
smart phone; tablet
computer; video com-
munications; Alexa
Page 9 of 19
Table 3 (continued)
used diagnosis
17 71–80 Female Wife White Living with person with Laptop; cooker alarm; 33.30 27.00 Vascular dementia Twelve years
dementia falls alarm; pendant
alarm; smart gas meter;
smart phone; smart
plugs; stove timer;
tablet computer; video
(2022) 22:490
communications; Alexa;
web camera
18 71–80 Female Wife White Living with person with Pendant alarm 44.47 38.91 Lewy body dementia Seven years
dementia
19 51–60 Female Daughter White Living with person with Audio book; laptop; 62.85 26.05 Alzheimer’s dementia Two years
dementia dementia clock; GPS
tracker; object locator;
smart gas meter; smart
phone; tablet computer
20 71–80 Male Husband + Son-in-law White Living with person Cooker alarm; dementia 51.21 33.58 Behaviour variant Four years (wife)
with dementia (wife). clock; GPS tracker; fronto-temporal Unsure (mother-in-law)
Mother-in-law recently smart gas meter; smart dementia (wife) + Vas-
moved to nursing lights; smartphone; cular dementia
home tablet computer; video (mother-in-law)
communications; ELK
lifting cushion
21 51–60 Female Daughter + stepdaugh- White Weekly visits (mother Falls alarm; Large but- 60.39 27.12 Alzheimer’s dementia Five years
ter recently moved to nurs- ton phone; memory (mother) + Vascular
ing home) clock; pendant alarm; dementia (stepdad)
picture button
telephone; Video com-
munications
22 51–60 Female Daughter White Daily visits Dementia clock; door 49.85 43.63 Alzheimer’s dementia Four years, six months
alarm; tracking device;
GPS tracker; memory
clock; smart phone
23 51–60 Female Daughter White Daily visits Electric bed; smart 50.88 17.41 Mixed dementia Two years
lights; tablet comp;
video communica-
tions; Alexa; movement
detector
Page 10 of 19
Table 4 Themes and sub-themes with illustrative quotes
Theme Sub-theme Example quote 1 Example quote 2 Example quote 3
Use of AT Staggered purchase and use of AT we got things as, as she worsened [Partici- Well as we got problems we found these Yeah. I, I got them, I think, gradually as Mum’s
pant 2] technological solutions to enable us to condition progressed … I was trying to main-
continue to care for him at home [Partici- tain her independence as long as possible
pant 23] [Participant 6]
Ease of using AT I think it’s [electric bed], it’s much more help I mean, I am very, I’m, I’m not au fait, au fait His own phone, he’s okay answering it and
than, than anything else, no. I mean, we, we with it all but what I do know I’m, I’m able to doing the odd text with one word. I, I, I’ve got
couldn’t … As I say, because she still can use quite efficiently [Participant 4] to admit, though, his iPad has been beneficial
cooperate with using it [Participant 12] to him [Participant 5]
Problems using AT She would take it [pendant alarm] off from But there was, there was at one point the, [There is a]GPS tracker on her phone but after
her neck and just throw it onto the settee the hoist that, it hadn’t charged and so he a while she forgot to, to take her phone with
(2022) 22:490
which activated the alarm [Participant 14] got stuck half-way [Participant 18] her, so when she went walkabout we had no
idea where she was, and that was something
that was really problematic [Participant 2]
Satisfaction with AT Ability of the PwD She’s got rheumatoid arthritis [Participant She’s got quite severe depression… She She can’t remedy any mistakes that she
15] won’t come downstairs, she refuses, she makes. She gets very frustrated, she panics
won’t go out in the garden. She’s in that and then she presses all sorts of buttons and
room and that is it [Participant 4] then calls us [Participant 14]
Problem solving I’ve got a little key finder, which I call my What we did instead was use the pad, these Well, I can, I can use it, but I don’t find any
mum finder, and I always take that out pressure pads that you put under the seat, technology particularly easy. I’ve always
with us as well and slip it in her pocket or under the cushion. So as he started to get got to sit and think through it, you know?
something, and again it’s on a lanyard so up out of the chair, it would, it’s wireless… [Participant 10]
she will play with it, and it’s just more if we the beep would go off and I could go and
get separated [Participant 19] make sure he was okay. [Participant 23]
Strengthened relationships That [CCTV camera] has helped because, I think it’s [AT], it’s maintained a very close It [Youtube on tablet computer] has helped
and obviously being able to see him, helps and stable relationship that was always me and mum because instead of just sitting
him because he thinks, yes, there’s people there. It’s, it’s just experienced in a different there keeping her occupied, and doing puz-
out there that care about him [Participant way [Participant 7] zles and, and chatting and watching, we’ve
23] been able to do the tai chi [Participant 10]
Impact of AT on carers Physical wellbeing It affected me physically because I ended up I do a little workout routine with Mum in Physically, without that [electric bed and
having to either lift him up or help him into the morning to YouTube [Participant 19] hoist] assistance, I could not have managed
bed or get him into bed, or get him into a [Participant 13]
wheelchair, get him into the car [Participant
18]
Mental wellbeing ‘…Zoom or WhatsApp or Skype have had I can’t begin to tell you what, you know, I tend to use the technology for my own
a tremendous help, otherwise the impact how much, how much, how helpful they amusement at times [Participant 20]
would have been significantly greater’ (Par- [GPS tracker, movement sensor] were
ticipant 10, Daughter, Visits daily) and how much anxiety they took away.
[Participant 6]
Social wellbeing It [Smart phone and tablet computer], it’s Yes, it’s helped there [socialising] defi- We can communicate with our daughter and
absolutely helped to sustain my social life nitely…it does mean that one person can grandson in [city] via WhatsApp or anything
[Participant 17] look after my dad at a time, rather than two and actually see them while we’re talking to
people being there if you need to do lots of them which has obviously made a difference
things [Participant 23] if she does that [Participant 7]
Page 11 of 19
Table 4 (continued)
Theme Sub-theme Example quote 1 Example quote 2 Example quote 3
AT use in daily life Coping with caring Yes, we wouldn’t be able to function at all You know, when you have worked out I could go out more often, and maybe not
without those [Electric bed; memory clock; routes for him to take, the length of time it going more than a quarter of an hour from
pendant alarm] [Participant 11] takes him to walk [using the GPS tracker] home or something like that, so I could get
and basically if he not back within that time back if a problem arose [find out using the
(2022) 22:490
then I, then I would have to go and see CCTV camera, smartphone] or, or I could ring
what’s happening [Participant 16] the next door neighbours and say, ‘Please go
and sort her out’ [Participant 20]
Person with dementia using AT He watches television which is good for When she comes over to us in the evening An internet device which calls my phone if
stimulating him but he can’t use the remote then we will, do a Zoom or we’ll do a, a she has a fall or if she wants to get in touch
control, so he relies on me to sort of get it all Facetime or, a WhatsApp with our children and she can talk to me over it. It’s [community
set up for him [Participant 11] so that she can see them, but left to her alarm] becoming less and less useful, because
own devices she couldn’t do it [Participant she can’t do anything … she can’t go any-
14] where on her own [Participant 7]
Simple devices We have a visual calendar in his, in his So, my idea is to keep regular photos of the The key safe outside, it means if at all neces-
kitchen that we write things on that are family where possible so that she’s aware of sary, if she forgot. Well, she wouldn’t know
happening and he really likes that [Partici- how they are changing and who they are how to use it, but we would always have a
pant 21] [Participant 8] key if, if we had to run up in an emergency
or something, there would be a key there
[Participant 10]
Wider support systems Support from others it’s [formal carer visits] a, it’s a safety net and I now have a private carer who comes to Even though there is a carer there as well
it also enables mum to see somebody else help me one hour in the morning Mondays moving her and doing a lot of things needs
[Participant 14] to Fridays and one hour in the evening two people now [Participant 12]
Tuesday, Wednesday, Thursday just to give
me a hand [Participant 9]
Ethical issues The [GPS] tracker, she doesn’t know what We didn’t tell him what it was for, we just I think personal security, personal secrecy
it is. I sneak it on her with her sunflower said that there was a button on it that he worries me a little bit on that front [Partici-
lanyard when we have to go in shops could press if he needed us and it would pant 20]
[Participant 19] ring on the phone here. But we didn’t
actually tell him that we knew where he
was going or that we could see where he
was because he wouldn’t have accepted it
[Participant 22]
Page 12 of 19
and electric hoists were large and unwieldy in a home “We use it [electric bed] as unfortunately she’s also
environment. got severe osteoarthritis”. [Participant 12, Daughter,
Visits every three weeks].
“I mean, all the equipment’s large, but that [electric
hoist] is really cumbersome”. [Participant 18, Wife, Persons with dementia benefitted from AT to sup-
Living with person with dementia] port them with cognitive issues, however as they were
still physically active, carers continued to struggle with
Some of the problems encountered with AT was a
providing adequate care. Some AT were later put in
result of the ability of the person with dementia to look
place when the situation of the person with dementia
after the devices.
deteriorated.
“Now the problem with the electronic alarm, the
“The first years [since diagnosis] were in some ways
electronical alarm watch lasted about four months
more difficult because she was still active and would
and then it got dropped in the bath by [person with
go walkabout… She then broke her hip and that
dementia]”. [Participant 15, Friend, Visits daily]
was it, her mobility went. She wouldn’t bear weight
The design features of some of the AT also caused thereafter…so we had to use these equipment [elec-
problems, did not serve their intended purpose or caused tric bed and hoist]”. [Participant 13, Husband, Liv-
confusion in the person with dementia. ing with person with dementia]
“The GPS [tracker], that is a right pain because it Carers also used AT to support persons with dementia,
has to be charged up every night”. [Participant 20, when their own abilities meant they could no longer par-
Husband, Living with person with dementia] ticipate in activities with the person with dementia.
“But, again, because, you know, you’ve got to have
“So, he quite likes walking and getting about and I
the angles and, and everything right and sitting
can’t no longer do the length of walk that he would
comfortably, that [video phone call] works up to an
like so we use the tracker [GPS tracker device]”. [Par-
extent, but I think after a while when we’ve, we’ve
ticipant 3, Wife, Living with person with dementia]
done the [video] call she’s sort of asking, “Well ...” you
know, “... where are they?” She can’t sort of under- Some of the AT were also abandoned when the person
stand the concept of what’s going on”. [Participant 8, with dementia’s situation worsened due to non-dementia
Daughter, Living with person with dementia] related reasons.
Carers wanted AT developers to involve them as end “He used, he really lost the ability to use a computer
users, to ensure devices are easy to use and are accessible [cognitive reasons], but he could, he did until maybe
to those who are technologically challenged. 18 months ago [now no longer using], cause his
eyesight really was getting worse, he used a Kindle
“Perhaps if they [AT developers] just sought a bit of
[eBook reader]”. [Participant 18, Wife, Living with
feedback, we could help them just alter things a little
person with dementia]
bit, you know, not, not greatly, just to make things
even more accessible for people and, and for us”. Problem solving
[Participant 10, Daughter, Visits daily] Carers described how their ability to problem solve
when the AT failed assisted them in the continued use of
the technology.
Satisfaction with AT “So, she has one friend where he phones her up and
The survey showed that carers who had more than 5 AT he painstakingly talks her through how to get into
devices expressed more satisfaction from using AT. Dur- Skype on the computer…then he can hang up and
ing the interview, carers confirmed how they made the they can have a conversation ‘cause he lives in Ger-
decision to use AT to support a person with dementia many’”. [Participant 15, Friend, Visits, Daily]
based on their needs, which included other co-morbidi-
Carers also simplified the use of some off-the shelf
ties not associated with dementia and described how the
devices to suit the specific needs of the person with
use of AT strengthened their relationship.
dementia.
Ability of the person with dementia
While most of the AT were used to support difficul- “He’s got some, a couple of photographs and my
ties a person experienced, because of dementia, some of number, and my daughter’s number [on the smart
the AT were used to support a person with dementia for phone]. And we had other things on it but we’ve had
other illnesses. to limit it to that [two numbers] because he can
manage to, to press and ring with those two [being] While some of these issues were long standing, a few
very visible, but that’s now what we’ve had to reduce physical health issues arose because of caring for the per-
it down to”. [Participant 17, Wife, Living with person son with dementia.
with dementia]
“I mean, I have picked him up and ended up in hos-
Strengthened relationships pital because I had done the disc in my back”. [Par-
Survey participants (75.21%) described that AT gave ticipant 17, Wife, Living with person with dementia]
additional time for themselves and the use of AT (46.05%
Carers also made changes to their lifestyle as part of the
of carers) helped to improve the care they provided. Car-
caring role for the person with dementia.
ers described that the AT helped strengthen their rela-
tionship with the person with dementia and described “Even things like, you know, my diet is affected,
it as another reason for their increased satisfaction with because he has to be fed completely and his ability to
using AT. chew and swallow is, is impaired. So, therefore I tend
Carers felt that the AT helped provide reassurance to to think, “Oh, well, I’ll eat just whatever he’s eating”.
the person with dementia, that the carer was still trying [Participant 9, Wife, Living with person with demen-
to keep them safe. tia]
“I suppose he [person with dementia], because it’s, In this context, AT did have a positive impact on the
he’s not able to communicate that well now, but physical wellbeing of carers, especially for moving and
hopefully it helps him to realise that I am coping handling of the person with dementia.
and keeping him safe with the equipment that we
“It’s certainly taken the strain off of my body, off my
use”. [Participant 11, Wife, Living with person with
muscles and off my back. So it’s been a great help,
dementia]
both the [electric] bed and the hoist”. [Participant
AT also helped some carers spend more time together 11, Wife, Living with person with dementia]
with the person with dementia.
The reassurance provided by AT used for safety, espe-
“We can sit down and watch something together [on cially for carers who lived away from the person with
tablet computer] and, and engage with it, and, you dementia, assisted carers in better sleep and maintaining
know…and stuff and we can have a giggle and then an active and healthy lifestyle.
you end up talking about old neighbours or old fam-
“So I can fall asleep better [carer using door alarm
ily members. So, yes, it does help”. [Participant 19,
for wandering alerts]”. [Participant 22, Daughter,
Daughter, Living with person with dementia]
Visits daily]
Mental wellbeing
Impact of AT on carers
Caring for a person with dementia did cause a strain on
Survey participants in the 46–65 age group and car-
the mental health of carers.
ers who were not extremely satisfied with AT had lower
mental health component scores, carers who lived with “So it created a huge amount of stress as Mum was
the person with dementia and older carers had lower deteriorating being on her own all the time”. [Partici-
physical component scores on the SF-12. The interviews pant 19, Daughter, Living with person with demen-
explored if AT had an impact on carers and to explain the tia]
variations in SF-12 physical and mental health compo-
Some of the issues were indeed compounded by car-
nent scores.
ers having to look after their own families in addition to
Physical wellbeing
a parent.
Carers had multiple physical health problems, this was
not always a result of caring or looking after a person “My son, he has [Diagnosis], so at home it can be
with dementia, age or illness associated physical health quite stressful at home at times”. [Participant 21,
problems. They reflected on their own health, which may Stepdaughter, Visits weekly]
explain the lower scores especially among older carers.
The use of AT did offer relief to carers and provided
“As for myself, I haven’t got very good health. I’m suf- reassurance to them.
fering from very bad back pain”. [Participant 1, Wife,
“So, it means we know that she’s taken her tablets.
Living with person with dementia]
We know that there’s music if she wants to. We know
she can use the bed”. [Participant 10, Daughter, Vis-
its daily] AT was perceived as being integrated into the daily life
and routines of the carers, especially when it concerned
Some of the AT also filled a need amongst carers for
the safety and welfare of the person with dementia.
their own leisure and communication needs.
“Well, all of them [CCTV, movement sensor, door
“I would be lost without my technology, socially,
alarm] become integrated. I mean I’ve got the front,
mentally I need it…I still run a [virtual] group but
the exit monitors on all the time… because, you
I also am able to join other groups”. [Participant 17,
know, you can’t be in the same room as them [person
Wife, Living with person with dementia]
with dementia] all the time, can you?”. [Participant
The AT also provided much needed time to carers for 6, Daughter, Living with person with dementia]
themselves and do tasks that they wanted to complete.
Some carers also felt that the use of AT increased the
“Well, I think it’s just that I can entertain Mum frequency of checking-up on the person with dementia
[using tablet computer] so that I can have some time and added to their care providing tasks.
to just catch up on paperwork or make a phone call”.
“So, we’ve just resorted to checking her frequently
[Participant 19, Daughter, Living with person with
[using CCTV], having the carer check her once a
dementia]
day … that’s the best thing that we can do … Oh,
Social wellbeing it’s, well, the monitoring of it has taken over our life”.
In addition to physical and mental health impacts, AT [Participant 14, Daughter, Visits daily]
also had an impact on social wellbeing of carers and the
Person with dementia using AT
person with dementia.
Carers also reported that persons with dementia had
“So, having the Facetime or the WhatsApp [on smart varied ability in using the AT by themselves, which meant
phone] has been very good, so she can see them [fam- carers had to continue to support them in the use of the
ily] and keep, keep in touch”. [Participant 14, Daugh- AT.
ter, Visits daily]
“Despite the fact it has the day and the date [demen-
It also provided an opportunity for carers to continue tia clock] she [Person with dementia] still sits and
to engage in social activities that they enjoyed before the asks what day it is … so, we say, ‘Well, have a look
diagnosis and progression of illness for the person with at the clock’… the radio, I thought it would be more
dementia. useful than it is. It’s all, it’s quite easy to set up, but
I think with all of these things, they all require lots
“We were still able to use assistive technology [GPS
of support from somebody else”. [Participant 10,
tracker, web camera] while mobile so that we could,
Daughter, Visits daily]
we could still go out and about and be able to get the
alarms or the, the contact if there was an issue [Par- Persons with dementia continued to struggle with
ticipant 2, Son, Visits weekly]. using AT even with prompts from carers.
“When the alarm goes off, she goes, ‘What’s that,
AT use in daily life what’s that noise?’ ‘It’s your alarm watch, are you
From the survey, carers revealed that the AT had not sig- gonna switch it off?’… ‘No, no’ and she just wouldn’t
nificantly changed the level of care provided to the per- switch it off, she wouldn’t do anything with it” [Par-
son with dementia by them but reported that AT helped ticipant 15, Friend, Visits daily]
in reducing the need for paid/formal care, which was one
Simple devices
of the reasons for carers recommending AT use to others.
Even though carers used AT, they combined these with
Coping with caring
non-electronic or simple devices/solutions that worked
AT is perceived by carers as supplementary to the care
in supporting and caring for the person with dementia.
that they provide. As the abilities of the person with
This combined use of simple and electronic AT proved
dementia deteriorates with progress of the illness, AT
more effective in the level of care provided as well as
helps carers cope with caring needs.
reducing the stress and anxiety associated with caring.
“We would look at the cameras if we were uncertain
“I also write our shopping lists on there [white
whether she had eaten fully”. [Participant 2, Son,
board] so, anything we’ve run out of I write on there,
Visits weekly]
or [Person with dementia] writes on there. So, we, we
write our shopping list out and then I’ll wipe it all off
afterwards. So, it is very, very handy”. [Participant 1, assume AT were innocuous devices and this encouraged
Wife, Living with person with dementia] the continued use of the AT.
Carers also adapted existing devices when the intended “At the moment she thinks that it [GPS tracker] con-
use of the AT did not support the person with dementia. trols her house-key. She doesn’t realise it’s a tracker.
So, she never ever leaves it because she knows she
“And I’d adapted a seven-day pill box to make, you
can’t get back in the house”. [Participant 14, Daugh-
know, to, to make sure there’s, that each compart-
ter, Visits daily]
ment is one particular time [adapting electronic pill
dispenser]”. [Participant 15, Friend, Visits daily] Carers did set up what could be seen as intrusive AT
with consent from a person with dementia, but continue
to use the AT, even when ongoing consent may be an
Wider support systems
issue, due to the progressive cognitive decline.
In the survey, carers reported that AT is an adjunct to
supporting a person with dementia. The costs, privacy “So, we’ve got, we set up internal cameras with her
concerns, support from wider care networks and support full knowledge and agreement but I don’t think she
systems all played a role on how carers used AT. remembered about those after a while”. [Participant
Support from others 2, Son, Visits weekly]
Carers who used AT for moving and handling of a per-
Carers also were aware of and keen to avoid privacy
son with dementia needed ongoing support from formal
and data leaking issues, when sensitive information could
carers. However, this did not always work as intended.
go out externally.
“I know Social Services do not allow the [electric]
“Those smart speakers are a brilliant idea in theory,
hoist to be used by a single person. Well, all the car-
but I feel very unhappy about the idea that every
ers that I know we all did it on our own because
single sound that goes into that thing [smart home
there wasn’t anybody else”. [Participant 13, Hus-
system] goes back in some form or another to who-
band, Living with person with dementia]
ever”. [Participant 20, Husband, Living with person
Even when AT supported a carer in caring tasks, they with dementia]
continued to rely on formal/paid carers to provide much
needed respite from constantly caring for a person with
Discussion
dementia.
The prevalence of dementia is steadily increasing [36].
“We managed to get a [paid] carer to come in two The attention on person-centred care has enabled peo-
days a week for three hours so I had a little bit of ple with dementia to live longer lives in the community.
relief…so it’s had a dramatic effect on my life”. Without adequate support for their progressive physical
[Participant 4, Daughter, Living with person with and cognitive needs, the majority of persons with demen-
dementia] tia may end up in care homes. Predictions are that availa-
bility and ability of carers to continue to support persons
In some instances, AT provided access to healthcare
with dementia in the community will not match demand
professionals, however carers had to provide extra sup-
[37]. Using technology and especially AT is seen as a
port and time for the person with dementia to access
solution in supporting persons with dementia and car-
these services.
ers. This study explains and describes the impact of AT
“Although, most of it [GP consultation] is done over use among carers who look after persons with dementia
the phone now. And of course, you know, there was living at home. Carers view AT as an adjunct to provid-
one, there’s been several calls where you had to log ing care for the person with dementia and in addition
into a website…in order to have the [virtual] face use AT themselves for leisure and improved social con-
to face consultation, which has been really compli- tacts and mental wellbeing. Carers continued to modify
cated…there’s no way she would have done that on existing ‘off the shelf ’ AT to meet their unique needs and
her own”. [Participant 15, Friend, Visits daily] requirements and in most instances, carers were satis-
fied with the use of AT. We have also explained how AT
Ethical issues
use in dementia care may not solely rely on the demen-
Carers clarified ethical issues associated with consent
tia related needs of a person with dementia; it is also
and continued use of AT when cognitive and behav-
dependent on the co-morbidities of persons with demen-
iour issues worsened. Carers let persons with dementia
tia and the carers themselves. Carers with existing physi-
cal and psychological challenges exacerbated by their
own age and health, experience additional burden while interactions. Despite our repeated efforts, only one par-
caring for a person with dementia and AT use in these ticipant in the interview, was from an ethnic minority
instances helps reduce their burden and improves their group. It would be important to further investigate how
perceived quality of life. Similar to earlier studies [38] we carers from Black, Asian or other Minority Ethnic com-
found that older carers are less likely to access and use munities in the UK are using AT and if they are impacted
new AT, as they may be unaware of these devices and are by using AT.
less likely to request support in acquiring and continued
use of these AT. We also explained how carers expressed Conclusions
better satisfaction with AT, when it is integrated into This study demonstrates that AT has a beneficial impact
daily life and how they adapted their role and routines to on carers who look after persons with dementia. AT
better use the AT in supporting the person with demen- devices with the right functionality and when used at
tia at home. Dementia changes the dynamics of the rela- those times when needs arose are regarded as useful
tionships between the person with dementia and their and satisfactory and are integrated into daily life and
carer [39], while caregiving may be perceived as stressful, routines. Technology development for dementia care
we found that AT does tend to strengthen the caregiving requires involvement and consultation with carers. There
relationship, as the AT itself becomes a socially connec- is a requirement for policy, funding and clinical practice
tive device and facilitates additional time spent using the change to a long-term care model that not only facilitates
AT together, especially for leisure and communication. prevention and risk reduction but also encourages educa-
While there exists sophisticated AT and smart homes, tion and accessibility of AT to all carers.
we found the use of this alongside simpler devices and
non-electronic AT enhanced satisfaction and met carers
Authors’ information
needs, as reiterated in one of the largest AT Trial [40].
VS is an Occupational Therapist and postgraduate stu-
This study also highlights that AT augments the amount
dent registered for his DPhil at the University of Oxford
of time carers provide care for a person with dementia,
exploring informal carers’ experience of assistive technol-
however there is a need for respite care [41, 42] for car-
ogy use in dementia. MP is an Associate Professor within
ers, and social communication with wider family mem-
the Health Services Research Unit (HSRU), Nuffield
bers who could look after the person with dementia and
Department of Population Health, University of Oxford.
substitute for the main carer cannot be replaced with AT
CJ is Professor of Health Services Research and Director
solutions. Most carers did not consider data sharing and
of the HSRU, Nuffield Department of Population Health,
privacy issues connected with AT use, however some car-
University of Oxford. MP and CJ have extensive experi-
ers were specifically concerned about this and limited
ence in research methods and are joint supervisors of VS
the type of AT being used, this is likely to require further
for the DPhil.
research and policy intervention as AT devices become
sophisticated and ubiquitous in use. This study reinforces
earlier findings [5, 7] of a mixed picture of use and use- Abbreviations
fulness of AT and adds to the literature on the impact of AT: Assistive Technology; CATEQ: Carers Assistive Technology Experience Ques-
tionnaire; SF-12: 12-Item Short Form Health Survey (version 1).
AT use on carers. AT alone or in combination with sim-
ple devices, formal carers and other interventions has
Supplementary Information
the potential to be an important addition to efforts to
The online version contains supplementary material available at https://doi.
improve the safety and welfare of people with dementia, org/10.1186/s12877-022-03167-4.
who wish to continue to live at home and that of carers
who support them. Below is the link to the electronic supplementary material.Additional file 1.
Carers’ Experience of Assistive Technology use in dementia - Participant
Information Sheet.
Strength and limitations
Additional file 2. Carers’ Experience of Assistive Technology use in demen-
The interviews provided an opportunity to explain and tia - Participant Consent Form.
delve deeper into the findings of the survey that explored Additional file 3. Carers’ Experience of Assistive Technology use in demen-
the experiences and impact of AT use in dementia care tia – Explanatory interviews: Interview topic guide.
amongst carers. Selecting participants from across the
UK ensured that geographical limitations of procur- Acknowledgements
ing and using AT did not limit the transferability of our Authors would like to acknowledge support from the three members of the
findings. The interviews were conducted over telephone patient and public engagement and involvement group set up as part of the
carers’ experience of assistive technology use in dementia study.
due to restrictions from the COVID-19 pandemic and
this might have missed out on non-verbal cues and
Authors’ contributions 11. Daly Lynn J, Rondón-Sulbarán J, Quinn E, Ryan A, McCormack B, Martin
VS, CJ and MP conceived the design of the study. VS drafted this version of the S. A systematic review of electronic assistive technology within sup-
manuscript with critical revision and input from MP and CJ. All authors have porting living environments for people with dementia. Dementia.
read and given approval for this version. VS is the guarantor of the manuscript. 2017;:147130121773364. doi:https://doi.org/10.1177/1471301217733649.
12. Kamel Boulos MN, Lou RC, Anastasiou A, Nugent CD, Alexandersson J,
Funding Zimmermann G, et al. Connectivity for healthcare and well-being man-
This research is part of a DPhil in Population Health at the University of Oxford agement: examples from six european projects. Int J Environ Res Public
and received no specific grant from any funding agency in the public, com- Health. 2009;6:1947–71. https://doi.org/10.3390/ijerph6071947.
mercial or not-for-profit sectors. 13. Gagnon-Roy M, Bourget A, Stocco S, Courchesne A-CL, Kuhne N,
Provencher V. Assistive technology addressing safety issues in dementia:
Availability of data and materials a scoping review. Am J Occup Ther. 2017;71:7105190020p1. https://doi.
The datasets generated during the study are available from the corresponding org/10.5014/ajot.2017.025817.
author on reasonable request. 14. Meiland F, Innes A, Mountain G, Robinson L, van der Roest H, García-Casal
JA, et al. Technologies to support community-dwelling persons with
dementia: a position paper on issues regarding development, usability,
Declarations effectiveness and cost-effectiveness, deployment, and ethics. JMIR Reha-
bil Assist Technol. 2017;4:e1. https://doi.org/10.2196/rehab.6376.
Ethics approval and consent to participate 15. Brims L, Oliver K. Effectiveness of assistive technology in improving the
This study was granted ethical approval by the University of Oxford Central safety of people with dementia: a systematic review and meta-analysis.
University Research Ethics Committee (Reference number: R57703/RE001). Routledge. doi:https://doi.org/10.1080/13607863.2018.1455805.
All Participants gave informed consent for the survey and interviews. All 16. Sriram V, Jenkinson C, Peters M. Carers’ experiences of assistive tech-
methods used were performed in accordance with the relevant guidelines nology use in dementia care: a cross sectional survey. BMC Geriatr.
and regulations. 2021;21:1–12. https://doi.org/10.1186/S12877-021-02417-1.
17. Gibson G, Dickinson C, Brittain K, Robinson L. The everyday use of
assistive technology by people with dementia and their family carers:
Consent for publication
a qualitative study. BMC Geriatr. 2015;15:89. https://doi.org/10.1186/
Not required.
s12877-015-0091-3.
18. Sriram V, Jenkinson C, Peters M. Carers’ Experiences of Assistive Technol-
Competing interests ogy Use in Dementia Care: A Cross Sectional Survey. Res Sq. 2020;PRE-
The authors declare that they do not have any competing interests. PRINT Version 1. doi:https://doi.org/10.21203/rs.3.rs-80622/v1.
19. Tashakkori A, Teddlie C. Sage handbook of mixed methods in social &
Received: 11 December 2021 Accepted: 23 May 2022 behavioral research. 2nd ed. London: SAGE Publications; 2010.
20. Ivankova NV, Creswell JW, Stick SL. Using Mixed-Methods Sequential
Explanatory Design: From Theory to Practice. Field Methods. 2006;18:3–
20. https://doi.org/10.1177/1525822X05282260.
21. O’Cathain A, Murphy E, Nicholl J. Why, and how, mixed methods research
References is undertaken in health services research in England: A mixed meth-
1. WHO, World Health Organization. Dementia a public health priority. ods study. BMC Health Serv Res. 2007;7:1–11. https://doi.org/10.1186/
London: World Health Organization; 2012. https://apps.who.int/iris/bitst 1472-6963-7-85.
ream/handle/10665/75263/9789241564458_eng.pdf;jsessionid=629AE 22. Shorten A, Smith J. Mixed methods research: expanding the evi-
AE59BD603C3498033CB6DE6931B?sequence=1. Accessed 27 Nov 2017 dence base. Evid Based Nurs. 2017;20:74–5. https://doi.org/10.1136/
2. Jiancaro T, Jaglal SB, Mihailidis A. Technology, design and dementia: eb-2017-102699.
an exploratory survey of developers. Disabil Rehabil Assist Technol. 23. Sriram V, Jenkinson C, Peters M. Using rapid cycle tests of change to
2017;12:573–84. https://doi.org/10.1080/17483107.2016.1187671. develop the Carers Assistive Technology Experience Questionnaire: a
3. Abdollahpour I, Nedjat S, Salimi Y. Positive Aspects of Caregiving and Car- cognitive interview study in the UK. BMJ Open. 2021;11:e042361. https://
egiver Burden: A Study of Caregivers of Patients With Dementia. J Geriatr doi.org/10.1136/bmjopen-2020-042361.
Psychiatry Neurol. 2017;:089198871774359. doi:https://doi.org/10.1177/ 24. Jenkinson C, Layte R. Development and testing of the UK SF-12. J Health
0891988717743590. Serv Res Policy. 1997;2:14–8. https://doi.org/10.1177/135581969700200
4. Gibson G, Dickinson C, Brittain K, Robinson L. Personalisation, customisa- 105.
tion and bricolage: how people with dementia and their families make 25. Jenkinson C, Layte R, Jenkinson D, Lawrence K, Petersen S, Paice C, et al. A
assistive technology work for them. Ageing Soc. 2018;:1–18. doi:https:// shorter form health survey: can the SF-12 replicate results from the SF-36
doi.org/10.1017/S0144686X18000661. in longitudinal studies? J Public Health. 1997;19:179–86. https://doi.org/
5. Sriram V, Jenkinson C, Peters M. Informal carers’ experience of assistive 10.1093/oxfordjournals.pubmed.a024606.
technology use in dementia care at home: a systematic review. BMC 26. Bazeley P. Integrating Analyses in Mixed Methods Research. First. London:
Geriatr. 2019;19:160. https://doi.org/10.1186/s12877-019-1169-0. SAGE publications Ltd; 2018.
6. The Audit commission. Assistive technology. London; 2004. http://www. 27. National Institute of Health Research, Alzhemier’s Society. Join dementia
wales.nhs.uk/documents/National20Report_FINAL.pdf. Accessed 27 Nov research. 2019. https://www.joindementiaresearch.nihr.ac.uk/home?
2017. login. Accessed 2 Jul 2019
7. Sriram V, Jenkinson C, Peters M. Carers’ experience of using assistive 28. NIHR Oxford BRC. Oxford Dementia and Ageing Research (OxDARE). 2019.
technology for dementia care at home: a qualitative study. BMJ Open. https://oxfordhealthbrc.nihr.ac.uk/our-work/oxdare/. Accessed 2 Jul 2019
2020;10:e034460. 29. Sriram V, Jenkinson C, Peters M. Impact of COVID-19 restrictions on carers
8. Fleming R, Sum S. Empirical studies on the effectiveness of assistive tech- of persons with dementia in the UK: a qualitative study. Age Ageing.
nology in the care of people with dementia: a systematic review. J Assist 2021;1. doi:https://doi.org/10.1093/AGEING/AFAB156.
Technol. 2014;8:14–34. https://doi.org/10.1108/JAT-09-2012-0021. 30. Lindseth A, Norberg A. A phenomenological hermeneutical method for
9. Jentoft R, Holthe T, Arntzen C. The use of assistive technology in the researching lived experience. Scand J Caring Sci. 2004;18:145–53. https://
everyday lives of young people living with dementia and their caregiv- doi.org/10.1111/j.1471-6712.2004.00258.x.
ers. Can a simple remote control make a difference? Int Psychogeriatr. 31. Laverty SM. Hermeneutic Phenomenology and Phenomenology: a
2014;26:2011–21. https://doi.org/10.1017/S1041610214001069. comparison of historical and methodological considerations. Int J Qual
10. Van der Roest HG, Wenborn J, Pastink C, Dröes R-M, Orrell M. Assistive Methods. 2003;2:21–35. https://doi.org/10.1177/160940690300200303.
technology for memory support in dementia. Cochrane Database Syst 32 Figal G. Hermeneutical phenomenology. Oxford: Oxford University Press;
Rev. 2017. https://doi.org/10.1002/14651858.CD009627.pub2. 2012. https://doi.org/10.1093/oxfordhb/9780199594900.013.0026.
33. QSR International Private Limited. NVivo version 12. 2020.

34. Dodgson JE. Reflexivity in qualitative research. J Hum Lact. 2019;35:220–2.
https://doi.org/10.1177/0890334419830990.
35. Etherington K. Becoming a reflexive researcher - using our selves in
research. London: Jessica Kingsley; 2004.
36. Pickett J, Brayne C. The scale and profile of global dementia research
funding. Lancet. 2019;394:1888–9.
37. Pickard L. A growing care gap’ the supply of unpaid care for older people
by their adult children in England to 2032. Ageing Soc. 2015;35:96–123.
https://doi.org/10.1017/S0144686X13000512.
38. Greenwood N, Smith R. The oldest carers: A narrative review and synthe-
sis of the experiences of carers aged over 75 years. 2016. https://doi.org/
10.1016/j.maturitas.2016.10.001 (Accessed 17 Dec 2018).
39. Quinn C, Nelis SM, Martyr A, Morris RG, Victor C, Clare L. Caregiver influ-
ences on ‘living well’ for people with dementia: findings from the IDEAL
study. Aging Ment Heal. 2020;24:1505–13.
40. Howard R, Gathercole R, Bradley R, Harper E, Davis L, Pank L, et al. The
effectiveness and cost-effectiveness of assistive technology and telecare
for independent living in dementia: a randomised controlled trial. Age
Ageing. 2021;00:1–9. https://doi.org/10.1093/ageing/afaa284.
41. O’connell B, Hawkins M, Ostaszkiewicz J, Millar L. Carers’ perspec-
tives of respite care in Australia: an evaluative study. Contemp Nurse.
2012;41:111–9.
42. Tretteteig S, Vatne S, Rokstad AMM. The influence of day care centres for
people with dementia on family caregivers: an integrative review of the
literature. Aging Ment Health. 2016;20:450–62. https://doi.org/10.1080/
13607863.2015.1023765.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in pub-
lished maps and institutional affiliations.
Ready to submit your research ? Choose BMC and benefit from:
• fast, convenient online submission

• thorough peer review by experienced researchers in your field
• rapid publication on acceptance
• support for research data, including large and complex data types
• gold Open Access which fosters wider collaboration and increased citations
• maximum visibility for your research: over 100M website views per year
At BMC, research is always in progress.
Learn more biomedcentral.com/submissions

Carers Using Assistive Technology in Dementia Care at Home: A Mixed Methods Study

Uploaded by

Copyright:

Available Formats

Carers Using Assistive Technology in Dementia Care at Home: A Mixed Methods Study

Uploaded by

Document Information

Original Title

Copyright

Available Formats

Share this document

Share or Embed Document

Sharing Options

Did you find this document useful?

Is this content inappropriate?

Copyright:

Available Formats

Carers Using Assistive Technology in Dementia Care at Home: A Mixed Methods Study

Uploaded by

Copyright:

Available Formats

Sriram et al.

BMC Geriatrics (2022) 22:490

RESEARCH Open Access

Carers using assistive technology

of survey participants to help explain the quantitative Participants

Table 1 Characteristics of survey participants

Table 2 Findings from the survey: perceived impact of AT

to meet specific needs, the satisfaction with these dementia]

phone; web camera

clock; smart phone;

tracker; Large button

Theme Sub-theme Example quote 1 Example quote 2 Example quote 3

33. QSR International Private Limited. NVivo version 12. 2020.

Ready to submit your research ? Choose BMC and benefit from:

• fast, convenient online submission

At BMC, research is always in progress.

Learn more biomedcentral.com/submissions

You might also like