Carers using assistive technology in dementia care: an explanatory sequential mixed methods study

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2 Informal carers support persons with dementia to live at home, even with deteriorating physical and 3 cognitive issues. The purpose of this explanatory sequential mixed methods study is to examine the 4 experiences and impact of Assistive Technology (AT) on carers, providing care for a person with 5 dementia. 6

7 The quantitative phase was a survey carried out with carers of persons with dementia in the UK, who 8 used AT. The qualitative phase involved in-depth telephone interviews with a purposive sample of 9 survey respondents. Data was analysed using hermeneutic phenomenology to develop, compare 10 and explain the findings of the survey. 11

12 The survey included data from 201 carers. Smartphones and tablet computers were the most 13 frequently used AT. Multiple AT were used in the care of persons with dementia predominantly for 14 safety, communication, and reminders. The Short Form-12 questions in the survey showed that 15 carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower mental 16 component scores and carers who lived with the person with dementia and older carers had lower 17 physical component scores. Twenty-three carers participated in the interviews, and 5 themes with 18 14 sub-themes were identified. The interviews helped confirm data from the survey on the impact of 19 AT on the physical, mental and social wellbeing of the carers. It helped describe reasons for 20 satisfaction with AT; how AT was used in daily life and strengthened caring relationships; and how 21 wider support systems enhanced the care of a person with dementia using AT. 22

23 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 3 This study describes the use of AT in the real-world context. AT supplements the care provided to a 24 person with dementia in the community. Appropriate use, access to AT and abilities of the carer can 25 enhance the support provided through AT to both carers and the person with dementia. 26 Key words: 27 Assistive Technology; Dementia; carers; mixed methods 28 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 4

29 Dementia is a public health priority[1]. It is a progressive illness, and even if functional challenges 30 impede a person’s ability to live independently, persons with dementia want to live at home[2]. 31 Informal carers (family, friends and neighbours), hereafter referred to as carers, play a crucial role in 32 supporting people living with dementia in the community. Assistive Technology (AT) is suggested as 33 one way of providing support to the person with dementia and their carers[3,4]. AT can be defined 34 as: “any item, piece of equipment, product or system that is used to increase, maintain or improve 35 the functional capabilities and independence of people with cognitive, physical or communication 36 difficulties”[5]. Carers usually make the decision on purchase, support maintenance and decide on 37 abandonment of AT. While AT is viewed as a pervasive solution to supporting carers and persons 38 with dementia to live for longer in the community[6–8], few attempts have been made to 39 understand the experiences of carers, who use and support the use of AT. Understanding carers’ 40 perceptions of AT and the impact of these ATs on carers is important to continue to provide support 41 for persons with dementia and carers. 42 We carried out a survey among carers of persons with dementia in the UK[9]. This provided a broad 43 understanding of the experiences of carers using AT. This survey provided information on the 44 current use, satisfaction and impact of AT use among carers of persons with dementia. The survey 45 was conducted using the Carers Assistive Technology Experience Questionnaire (CATEQ) [10] and the 46 SF-12 (version 1)[11]. The SF-12 contains items covering physical functioning, social functioning, role 47 functioning (physical and mental), vitality, bodily pain, mental health and general health. The SF-12 48 generates two summary scores: The Physical Component Score and the Mental Component Score 49 (PCS and MCS respectively). The PCS and MCS are generated using norm-based methods and are 50 standardised, using scores from the general population[11,12], to have a mean of 50 (SD 10). A 51 higher score indicates better quality of life. 52 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 5 To gain a better insight into these findings, interpret them and to enrich the understanding of the 53 experience and impact of using AT on carers, we used a sequential explanatory mixed-methods 54 design[13–15]. In this method, quantitative data are collected and analysed first, then qualitative 55 data are collected and analysed to help explain the quantitative data. 56 Study objectives: 57 This paper in addition to describing the results from the survey[9] provides context to the findings, 58 by describing: 59 1. The experience of carers in using AT in the care of persons with dementia and 60 2. The impact of AT on carers well-being and daily life. 61 Ethics and Patient and Public Involvement: 62 This study was approved by the University of Oxford Central University Research Ethics Committee 63 (Reference number: R57703/RE001). All potential participants were provided with a participant 64 information sheet (supplementary file 1) and interview participants provided informed written 65 consent (supplementary file 2) prior to the interview. No personal identifiable information of 66 participants is reported in this paper. This study is part of a larger research project which has a 67 patient and public advisory group that meets twice a year. This group consists of two carers of 68 persons with dementia and a person with dementia (all living in England). This group reviewed the 69 final version of the CATEQ and informed the interview guide questions. This group has also 70 committed to support dissemination of study results to other patient involvement groups and their 71 wider networks. 72

73 1.1 Study Design: 74 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 6 This is a mixed-methods study [Fig 1], with the cross-sectional survey carried out between April to 75 July 2020. Following the survey analysis, interview questions were formulated to gain further 76 understanding into carers’ experiences as identified in the survey. Interview participants were 77 recruited and interviewed between October – December 2020. 78 Fig 1: Flowchart of mixed methods design for carers using assistive technology in dementia care 79 study. 80 1.2 Participants: 81 1.2.1 Recruitment: 82 Survey participants were recruited using online databases via the Join Dementia Research 83 website[16], Oxford Dementia and Aging Research (OxDARE)[17] and through health care 84 professionals who prescribe AT for persons with dementia. Participants were carers of persons with 85 dementia based in the United Kingdom. The inclusion criteria were: adult carers - family, friends or 86 neighbours - providing at least 10 hours of care (e.g. shopping, leisure, personal care, finance) per 87 week to a person with dementia who lives in their own home, with the carer living together with or 88 away from the person with dementia; and carers needed to have used at least one AT device at 89 home in the previous year. For the interviews, an email with the participant information sheet was 90 sent to survey participants who gave consent to be contacted. From those who replied expressing an 91 interest in participating, a purposive sample reflecting variations in age, sex, living arrangements, 92 rurality, and relationship with persons with dementia were selected for the interviews. 93 1.2.2 Data collection: 94 For the survey, questionnaires were completed and returned by post or by using an anonymous 95 online survey link. Data collection for the quantitative study is described in detail elsewhere[9]. For 96 the qualitative study, semi-structured interviews were conducted over the telephone due to the 97 restrictions from the COVID-19 pandemic. The interview focused on caregiving experience, the use 98 and impact of AT on carers and on caring for the person with dementia. All questions and prompts 99 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 7 were open ended and informed by an earlier systematic review[4], qualitative study[18] and the 100 survey[9] and confirmed as meeting the needs for answering the research questions by the patient 101 and public advisory group. All interviews were carried out by VS. Demographic data was taken from 102 the survey responses and confirmed as being accurate with the participant at the start of the 103 interview. The background of the interviewer as an Occupational Therapist and consequent interest 104 in the research topic was discussed with participants. The participants were not known to the 105 interviewer or the other authors before recruitment. Trust in the interviewer was built by 106 establishing rapport with the participants through email and prior to answering questions as part of 107 the telephone interview. Interviews lasted between 30-50 minutes, were audio-recorded, and later 108 transcribed by a professional transcriber, verbatim with names of participants, names of the person 109 with dementia, and any towns/cities mentioned in the interviews pseudonymised to ensure 110 confidentiality. 111 1.3 Data analysis: 112 1.3.1 Quantitative data analysis: 113 Survey data was analysed using IBM SPSS Statistics version 26. Descriptive statistics were used to 114 examine the types of AT used, what the AT was used for, costs of the AT, perceived value for money 115 and satisfaction with the AT. Bivariate analyses were conducted to examine differences in socio-116 demographic variables between respondents and SF-12 scores. The level of significance was set at 117 p<0.05 for all analyses. 118 1.3.2 Qualitative data analysis: 119 The data was analysed using Hermeneutic Phenomenology, a process outlined by Lindseth and 120 Norberg and others[19–21] and used in our previous qualitative study[18]. Hermeneutic 121 phenomenology focusses on the subjective accounts of individuals own experiences in context, and 122 thematic analysis seeks to identify and describe topic categories raised by interviewees in describing 123 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 8 and explaining the survey results. VS listened to each of the interviews and read the transcripts 124 multiple times (first step). Line by line coding of each transcript was carried out using the software 125 package NVivo 12[22] (second step). The data analysis was ongoing throughout the period of data 126 collection, this ongoing method allowed earlier transcripts to be recoded to reflect new codes. All 127 the coded units were grouped into themes and underlying sub-themes (third step). Data collection 128 continued after 20 interviews to ensure no new codes were developed and at the twenty third 129 interview, it was concluded that data saturation was reached. 130 1.3.3 Mixing analysis: 131 The themes were developed, compared and interpreted in context of the survey results[23]. All 132 authors coded selected transcripts independently and met regularly to discuss and agree ongoing 133 data collection, generate themes, interpretation and integrating data analysis with survey results. 134 Reflexivity (the examination of own beliefs, judgments and practices during the research process and 135 how these may have influenced the research)[24,25] and integrity of the research process was 136 maintained by all authors. The authors’ experience and previous research with people with long-137 term conditions, including dementia, provided the necessary expertise for this research. However, it 138 is acknowledged that this experience may have influenced the coding and interpretation of the 139 themes. 140

141 Full results from the survey is reported elsewhere[9]. A brief overview of the findings is given here to 142 provide context. Data from 201 carers was analysed. Participant characteristics from the survey is 143 described in Table 1. AT were predominantly used for safety, communication, and reminders. 144 Multiple AT devices were used in the care of persons with dementia and the number of AT used was 145 associated with perceived satisfaction. Carers reported that AT helped them reduce effort of caring 146 for a person with dementia and reduced perceived stress. Additional support was needed to support 147 purchase and continued use of AT, and AT devices were abandoned when the person with dementia 148 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 9 could no longer use them. A summary of the important findings from the survey is provided in Table 149 2. 150 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 10 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 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 11 Relationship with person with dementia Parent 110 54.7 Sibling 3 1.5 Friend 2 1.0 Neighbour 1 0.5 Spouse 72 35.8 Grandparent 3 1.5 Other 10 5.0 Age (Minimum – Maximum); Mean (SD) 33 - 92 Years; 61.67 (12.07) All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 12 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 effort (n=200) 8.8 27.2 16.5 25.0 22.5 AT helps in reducing stress (n=194) 5 21.1 11.0 23.9 39.0 AT helps in reducing anxiety (n=200) 5.7 15.9 9.8 19.0 31.7 AT helps make caring role easier (n=198) 7.2 26.4 10.8 30.8 24.8 AT reduces need for additional paid care (n=123) 32.2 11.9 10.0 21.1 24.9 AT helps reduce harm/potential harm (n=198) 32.5 16.4 7.4 15.7 28.0 Deteriorated a lot Deteriorated a little Not changed Improved a little Improved a lot Care provided for a person with dementia changed (n=198) 4.0 3.6 48.3 32.6 11.5 Extremely dissatisfied Somewhat dissatisfied Neither satisfied/dissatisfied Somewhat satisfied Extremely satisfied Overall satisfaction with AT 1.0 1.0 7.5 55.2 34.8 Less than 5 AT used (N) 1.3 (1) 0 (0) 17.3 (13) 54.7 (41) 26.7 (20) Five or more AT used (N) 0.8 (1) 1.6 (2) 1.6 (2) 56.0 (70) 40.0 (50) Value df Asymptotic Significance (2-sided) Pearson chi-square 19.200 4 0.001 Physical and Mental health component scores PCS MCS 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 66 76 44.37 41.88 – 46.86 46.49 44.22 – 48.75 p 0.000 0.012 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 13 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 person with dementia 103 46.18 43.93 – 48.43 44.69 42.69 – 46.69 Living away from the person with dementia 98 52.36 50.78 – 53.94 46.08 43.98 – 48.17 p <0.001 0.244 Relationship with person with dementia Parent 110 51.74 50.08 – 53.51 44.38 42.34 – 46.42 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 Grandparent 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 Satisfaction with AT Extremely satisfied 70 48.71 46.32 – 51.10 48.26 46.29 – 50.22 Not extremely satisfied 130 49.38 47.54 – 51.21 43.94 42.04 – 45.85 P 0.720 0.010 Number of AT being used Less than 5 AT 76 49.20 46.95 – 51.46 46.16 43.88 – 48.44 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 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 14 For the qualitative study 23 carers (18 women, 4 men, 1 non-binary) participated in the interviews. 151 Participants’ age ranged from 51 to 85. Table 3 provides further details of the interview participants.152 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 15 Table 3: Characteristics of interview participants 153 ID Age Range Gender Person with dementia is Ethnicity Living arrangements Assistive Technology used PCS Score MCS Score Type of dementia Years/mo nths since diagnosis 1 71-80 Female Husband White Living with person with dementia Laptop; cooker alarm; smart phone; stove timer 23.11 52.03 Vascular dementia Two years 2 51-60 Male Mother White Weekly visits Audio books; automatic night lamp; dementia clock; GPS tracker; large button telephone; object locator; pendant alarm; picture button telephone; smart phone; web camera 57.23 55.92 Alzheimer’s dementia Eighteen months 3 71-80 Female Husband White Living with person with dementia Audio books; laptop; dementia clock; falls alarm; GPS tracker; pendant alarm; tablet computer; Alexa; web camera 54.37 42.29 Alzheimer’s dementia Three years 4 51-60 Female Mother White Living with person with dementia Automatic night lamp; laptop; smart gas meter; smart lights; tablet computer; web camera 38.48 22.51 Unsure Ten years 5 71-80 Female Husband White Living with person with dementia Electronic reminders; large button telephone; smart phone; tablet computer; video communication 39.90 35.17 Alzheimer’s dementia Four years 6 61-70 Female Mother White Living with person with dementia Falls alarm; CCTV; GPS tracker; door alarm; memory clock; movement sensor; picture button telephone; web camera 57.12 26.40 Mixed dementia Eight years 7 81-90 Male Wife White Living with person with dementia Laptop; dementia clock; community alarm; smartphone; video communications 52.83 47.95 Alzheimer’s dementia Three years, six months All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 16 ID Age Range Gender Person with dementia is Ethnicity Living arrangements Assistive Technology used PCS Score MCS Score Type of dementia Years/mo nths since diagnosis 8 61-70 Female Mother White Living with person with dementia Laptop; memory clock; tablet computer; video communications 55.91 55.86 Mixed dementia One year 9 61-70 Female Husband White Living with person with dementia Automatic night lamp; baby monitor; laptop; cooker alarm; dementia clock; smart phone; stove timer; video communications; web camera; satnav in car 53.95 47.56 Mixed dementia Six years 10 61-70 Female Mother White Daily visits Electric bed; dementia clock; falls alarm; GPS tracker; Large button telephone; simple radio 62.47 28.33 Alzheimer’s dementia Four years 11 61-70 Female Husband White Living with person with dementia Electric bed; memory clock; pendant alarm 34.54 47.69 Vascular dementia Three years 12 61-70 Female Mother White Visits every three weeks Electric bed; stand aid 50.91 50.12 Unsure Four years 13 71-80 Male Wife White Living with person with dementia Baby monitor; laptop; electric bed; smart gas meter; smart phone; video comms; Hoist; Wheelchair; WAV vehicle 55.50 57.82 Fronto- temporal dementia Eleven years 14 61-70 Female Mother White Daily visits Laptop; dementia clock; GPS tracker; large button telephone; memory clock; pendant alarm; smart gas meter; smart phone; smart watch; video communications 57.99 43.30 Alzheimer’s dementia Seven years 15 51-60 Non- binary Friend Other Daily visits Laptop; electronic reminders; large button telephone; video communications; web camera 56.44 49.98 Parkinson’s Dementia One year, three months All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 17 ID Age Range Gender Person with dementia is Ethnicity Living arrangements Assistive Technology used PCS Score MCS Score Type of dementia Years/mo nths since diagnosis 16 61-70 Female Husband White Living with person with dementia Assistive robot; automatic night lamp; laptop; electronic reminders; GPS tracker; smart phone; tablet computer; video communications; Alexa 24.31 35.38 Alzheimer’s dementia Four years 17 71-80 Female Husband White Living with person with dementia Laptop; cooker alarm; falls alarm; pendant alarm; smart gas meter; smart phone; smart plugs; stove timer; tablet computer; video communications; Alexa; web camera 33.30 27.00 Vascular dementia Twelve years 18 71-80 Female Husband White Living with person with dementia Pendant alarm 44.47 38.91 Lewy body dementia Seven years 19 51-60 Female Mother White Living with person with dementia Audio book; laptop; dementia clock; GPS tracker; object locator; smart gas meter; smart phone; tablet computer 62.85 26.05 Alzheimer’s dementia Two years 20 71-80 Male Wife + Mother-in- law White Living with person with dementia (wife). Mother-in-law recently moved to nursing home Cooker alarm; dementia clock; GPS tracker; smart gas meter; smart lights; smartphone; tablet computer; video communications; ELK lifting cushion 51.21 33.58 Behaviour variant fronto- temporal dementia (wife) + Vascular dementia (mother-in- law). Four years (wife) Unsure (mother- in-law) 21 51-60 Female Mother + stepdad White Weekly visits (mother recently Falls alarm; Large button phone; memory clock; pendant alarm; 60.39 27.12 Alzheimer’s dementia (mother) + Five years All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 18 ID Age Range Gender Person with dementia is Ethnicity Living arrangements Assistive Technology used PCS Score MCS Score Type of dementia Years/mo nths since diagnosis moved to nursing home) picture button telephone; Video communications Vascular dementia (stepdad) 22 51-60 Female Father White Daily visits Dementia clock; door alarm; tracking device; GPS tracker; memory clock; smart phone 49.85 43.63 Alzheimer’s dementia Four years, six months 23 51-60 Female Father White Daily visits Electric bed; smart lights; tablet comp; video communications; Alexa; movement detector 50.88 17.41 Mixed dementia Two years 154 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 19 Themes: 155 Five themes and 14 sub-themes were identified in the analysis. We describe the themes from the 156 qualitative interviews and situate them in context of the survey results. Additional illustrative 157 participant quotes are provided in Table 4. 158 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 20 Table 4: Themes and sub-themes with illustrative quotes 159 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 [Participant 2] Well as we got problems we found these technological solutions to enable us to continue to care for him at home [Participant 23] Yeah. I, I got them, I think, gradually as Mum's condition progressed ... I was trying to maintain her independence as long as possible [Participant 6]. Ease of using AT I think it’s [electric bed], it’s much more help than, than anything else, no. I mean, we, we couldn’t … As I say, because she still can cooperate with using it [Participant 12] I mean, I am very, I’m, I’m not au fait, au fait with it all but what I do know I’m, I’m able to use quite efficiently [Participant 4] His own phone, he’s okay answering it and doing the odd text with one word. I, I, I’ve got to admit, though, his iPad has been beneficial to him [Participant 5] Problems using AT … but she would take it [pendant alarm] off from her neck and just throw it onto the settee which activated the alarm [Participant 14] But there was, there was at one point the, the hoist that, it hadn’t charged and so he got stuck half-way [Participant 18] …GPS tracker on her phone but after a while she forgot to, to take her phone with 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 15] She’s got quite severe depression... She won’t come downstairs, she refuses, she won’t go out in the garden. She’s in that room and that is it [Participant 4] She can’t remedy any mistakes that she makes. She gets very frustrated, she panics and then she presses all sorts of buttons and then calls us [Participant 14] Problem solving I’ve got a little key finder, which I call my mum finder, and I always take that out with us as well and slip it in her pocket or something, and again it’s on a lanyard so she will play with it, and it’s just more if we get separated [Participant 19] So what we did instead was use the pad, these pressure pads that you put under the seat, under the cushion. So as he started to get up out of the chair, it would, it’s wireless…the beep would go off and I could go and make sure he was okay. [Participant 23] Well, I can, I can use it, but I don’t find any technology particularly easy. I’ve always got to sit and think through it, you know? [Participant 10] All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 21 Theme Sub-theme Example quote 1 Example quote 2 Example quote 3 Strengthened relationships That [CCTV camera] has helped because, and obviously being able to see him, helps him because he thinks, yes, there’s people out there that care about him [Participant 23] I think it’s [AT], it’s maintained a very close and stable relationship that was always there. It’s, it’s just experienced in a different way [Participant 7] It [Youtube on tablet computer] has helped me and mum because instead of just sitting there keeping her occupied, and doing puzzles and, and chatting and watching, we’ve been able to do the tai chi [Participant 10] Impact of AT on carers Physical wellbeing It affected me physically because I ended up having to either lift him up or help him into bed or get him into bed, or get him into a wheelchair, get him into the car [Participant 18] I do a little workout routine with Mum in the morning to YouTube [Participant 19] For my quality of life, but physically, without that [electric bed and hoist] assistance, I could not have managed [Participant 13] Mental wellbeing My dad was always the one that we went to when we needed to speak to someone, and that support was gone [Participant 22] I can't, I can't begin to tell you what, you know, how much, how much, how helpful they [GPS tracker, movement sensor] were and how much anxiety they took away. [Participant 6] I tend to use the technology for my own amusement at times [Participant 20] Social wellbeing It [Smart phone and tablet computer], it’s absolutely helped to sustain my social life [Participant 17] Yes, it’s helped there [socialising] definitely…it does mean that one person can look after my dad at a time, rather than two people being there if you need to do lots of things [Participant 23] We can communicate with our daughter and grandson in [city] via WhatsApp or anything and actually see them while we’re talking to them which has obviously made a difference if she does that [Participant 7] AT use in daily life Coping with caring Yes, we wouldn’t be able to function at all without those[Electric bed; memory clock; pendant alarm] [Participant 11] You know, when you have worked out routes for him to take, the length of time it takes him to walk [using the GPS tracker] and basically if he not back within that time then I, then I would have to go and see what’s happening [Participant 16] I could go out more often, and maybe not going more than a quarter of an hour from home or something like that, so I could get back if a problem arose [find out using the CCTV camera, smartphone] or, or I could ring the next door All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 22 Theme Sub-theme Example quote 1 Example quote 2 Example quote 3 neighbours and say, ‘Please go and sort her out’ [Participant 20] Person with dementia using AT He watches television which is good for stimulating him but he can’t use the remote control, so he relies on me to sort of get it all set up for him [Participant 11] When she comes over to us in the evening then we will, do a Zoom or we’ll do a, a Facetime or, a WhatsApp with our children so that she can see them, but left to her own devices she couldn’t do it [Participant 14] An internet device which calls my phone if she has a fall or if she wants to get in touch and she can talk to me over it. It’s [community alarm] becoming less and less useful, because she can’t do anything … she can’t go anywhere on her own [Participant 7] Simple devices We have a visual calendar in his, in his kitchen that we write things on that are happening and he really likes that [Participant 21] So my idea is to keep regular photos of the family where possible so that she’s aware of how they are changing and who they are [Participant 8] The key safe outside, it means if at all necessary, if she forgot. Well, she wouldn’t know how to use it, but we would always have a 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 it also enables mum to see somebody else [Participant 14] I now have a private carer who comes to help me one hour in the morning Mondays to Fridays and one hour in the evening Tuesday, Wednesday, Thursday just to give me a hand [Participant 9] Even though there is a carer there as well moving her and doing a lot of things needs two people now [Participant 12] Ethical issues The [GPS] tracker, she doesn’t know what it is. I sneak it on her with her sunflower lanyard when we have to go in shops [Participant 19] We didn’t tell him what it was for, we just said that there was a button on it that he could press if he needed us and it would 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] I think personal security, personal secrecy worries me a little bit on that front [Participant 20] 160 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 23 1. Use of AT: 161 In the survey, carers indicated using a wide variety of AT including smart phones, tablet computers 162 and video monitoring systems. They also reported staggered purchase or use of AT. Some AT devices 163 such as pendant alarms and audio books were frequently abandoned as the person with dementia 164 was no longer able to use them. 165 a. Staggered purchase and use of AT 166 Interview participants confirmed that as a person with dementia’s needs worsened, AT devices were 167 added to support them and as these AT were purchased to meet specific needs, the satisfaction with 168 these devices were higher. 169 “the clock was one of the first things that I got because she really struggled with time and 170 day”. [Participant 19] 171 Computers and tablet computers were already in use by carers or the person with dementia and 172 were adapted to support caring needs 173 “Well, I already had the laptop…and she started using it for memory [games]”. [Participant 174 13] 175 Carers had to anticipate future needs of the person with dementia and added the AT devices as and 176 when a need arose. 177 “The increase in [motion sensor] alarms has gone on as he has deteriorated and that is really 178 because of the danger of him falling downstairs...it’s had to be a gradual, a gradual putting-179 in and I’ve still, you know, I’ve still got one or two things, one or two plugs that I need to 180 change on the Hive [smart home technology] system.” [Participant 17] 181 Some of the AT procurement was constrained due to the carers’ own knowledge of what AT was 182 available and what devices could support the person with dementia. 183 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 24 “I think in all honesty I’d have liked to have had that one [CCTV cameras] before but didn’t 184 really know what would be suitable and again, lacked the technological know-how to say 185 how do I sort this out.” [Participant 9] 186 b. Ease of using AT 187 The ease of using AT had an impact on satisfaction, continued use or abandonment of AT. This in 188 turn affected the impact the AT had on carers. 189 Carers found some AT helped a person with dementia, even when they lived away. This provided the 190 carer with a sense of reassurance. 191 “The tile [object locator] certainly helped so that remotely we could make them [objects] buzz 192 for her and that made it easier to find things”. [Participant 2] 193 However, carers also reported that persons with dementia struggled to use AT such as pendant 194 alarms, as intended 195 “she’s supposed to press [pendant alarm] if she falls? But she, she can’t remember what it’s 196 there for. She puts it on religiously, it’s like putting on jewellery. But the twice she has 197 fallen in the house, she’s never pressed it”. [Participant 10] 198 Elderly carers who were not used to technology and digital devices, initially struggled with AT and 199 described the need for access to support and education. 200 “I think I’ve done extremely well with it [AT] but I’ve possibly … It, it would have been useful 201 to have some access to education about that”. [Participant 9] 202 c. Problems using AT: 203 While most of the AT devices that were currently in use were perceived as being user-friendly, carers 204 also reported problems in the AT themselves or in their design. Some of the AT equipment such as 205 electric beds and electric hoists were large and unwieldy in a home environment. 206 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 25 “I mean, all the equipment’s large, but that [electric hoist] is really cumbersome”. 207 [Participant 18] 208 Some of the problems encountered with AT was a result of the ability of the person with dementia 209 to look after the devices. 210 “Now the problem with the electronic alarm, the electronical alarm watch lasted about four211 months and then it got dropped in the bath by [person with dementia]”. [Participant 15] 212 The design features of some of the AT also caused problems, did not serve their intended purpose or 213 caused confusion in the person with dementia. 214 “The GPS [tracker], that is a right pain because it has to be charged up every night”. 215 [Participant 20] 216 “But, again, because, you know, you’ve got to have the angles and, and everything right and 217 sitting comfortably, that [video phone call] works up to an extent, but I think after a while 218 when we’ve, we’ve done the [video] call she’s sort of asking, “Well ...” you know, “... where 219 are they?” She can’t sort of understand the concept of what’s going on”. [Participant 8] 220 Carers wanted AT developers to involve them as end users, to ensure devices are easy to use and are 221 accessible to those who are technologically challenged. 222 “perhaps if they just sought a bit of feedback, we could help them just alter things a little bit, 223 you know, not, not greatly, just to make things even more accessible for people and, and for 224 us”. [Participant 10] 225 2. Satisfaction with AT: 226 The survey showed that carers who had more than 5 AT devices expressed more satisfaction from 227 using AT. During the interview, carers confirmed how they made the decision to use AT to support a 228 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 26 person with dementia based on their needs, which included other co-morbidities not associated 229 with dementia and described how the use of AT strengthened their relationship. 230 a. Ability of the person with dementia 231 While most of the AT were used to support difficulties a person experienced, because of dementia, 232 some of the AT were used to support a person with dementia for other illnesses. 233 “We use it [electric bed] as unfortunately she’s also got severe osteoarthritis”. [Participant 234 12]. 235 Persons with dementia benefitted from AT to support them with cognitive issues, however as they 236 were still physically active, carers continued to struggle with providing adequate care. Some AT were 237 later put in place when the situation of the person with dementia deteriorated. 238 “The first years [since diagnosis] were in some ways more difficult because she was still 239 active and would go walkabout… She then broke her hip and that was it, her mobility went. 240 She wouldn’t bear weight thereafter…so we had to use these equipment [electric bed and 241 hoist]”. [Participant 13] 242 Carers also used AT to support persons with dementia, when their own abilities meant they could no 243 longer participate in activities with the person with dementia. 244 “So, he quite likes walking and getting about and I can’t no longer do the length of walk that 245 he would like so we use the tracker [GPS tracker device]”. [Participant 3] 246 Some of the AT were also abandoned when the person with dementia’s situation worsened due to 247 non-dementia related reasons. 248 “He used, he really lost the ability to use a computer [cognitive reasons], but he could, he 249 did until maybe 18 months ago [now no longer using], cause his eyesight really was getting 250 worse, he used a Kindle [eBook reader]”. [Participant 18] 251 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 27 b. Problem solving 252 Carers described how their ability to problem solve when the AT failed assisted them in the 253 continued use of the technology. 254 “So, she has one friend where he phones her up and he painstakingly talks her through how 255 to get into Skype on the computer…then he can hang up and they can have a conversation 256 ‘cause he lives in Germany’”. [Participant 15] 257 Carers also simplified the use of some off-the shelf devices to suit the specific needs of the person 258 with dementia. 259 “He’s got some, a couple of photographs and my number, and my daughter’s number [on 260 the smart phone]. And we had other things on it but we’ve had to limit it to that [two 261 numbers] because he can manage to, to press and ring with those two [being] very visible, 262 but that’s now what we’ve had to reduce it down to”. [Participant 17] 263 c. Strengthened relationships 264 While some survey participants described that AT gave additional time for themselves and the use of 265 AT did not make a difference to their relationship with the person with dementia, most carers 266 described that the AT helped strengthen their relationship with the person with dementia. This was 267 confirmed by interview participants as another reason for their increased satisfaction with using AT. 268 Carers felt that the AT helped provide reassurance to the person with dementia, that the carer was 269 still trying to keep them safe. 270 “I suppose he [person with dementia], because it’s, he’s not able to communicate that well 271 now, but hopefully it helps him to realise that I am coping and keeping him safe with the 272 equipment that we use”. [Participant 11] 273 AT also helped some carers spend more time together with the person with dementia 274 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 28 “We can sit down and watch something together [on tablet computer] and, and engage with 275 it, and, you know…and stuff and we can have a giggle and then you end up talking about old 276 neighbours or old family members. So, yes, it does help”. [Participant 19] 277 3. Impact of AT on carers 278 Survey participants in the 46-65 age group and carers who were not extremely satisfied with AT had 279 lower mental health component scores, carers who lived with the person with dementia and older 280 carers had lower physical component scores on the SF-12. The interviews explored if AT had an 281 impact on carers and to explain the variations in SF-12 physical and mental health component 282 scores. 283 a. Physical wellbeing 284 Carers had multiple physical health problems, this was not always a result of caring or looking after a 285 person with dementia, age or illness associated physical health problems. They reflected on their 286 own health, which may explain the lower scores especially among older carers. 287 “As for myself, I haven’t got very good health. I’m suffering from very bad back pain”. 288 [Participant 1] 289 While some of these issues were long standing, a few physical health issues arose because of caring 290 for the person with dementia. 291 “I mean, I have picked him up and ended up in hospital because I had done the disc in my 292 back”. [Participant 17] 293 Carers also made changes to their lifestyle as part of the caring role for the person with dementia. 294 “Even things like, you know, my diet is affected, because he has to be fed completely and his 295 ability to chew and swallow is, is impaired. So, therefore I tend to think, “Oh, well, I’ll eat 296 just whatever he’s eating”. [Participant 9] 297 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 29 In this context, AT did have a positive impact on the physical wellbeing of carers, especially for 298 moving and handling of the person with dementia. 299 “It’s certainly taken the strain off of my body, off my muscles and off my back. So it’s been a 300 great help, both the [electric] bed and the hoist”. [Participant 11] 301 The reassurance provided by AT used for safety, especially for carers who lived away from the 302 person with dementia, assisted carers in better sleep and maintaining an active and healthy lifestyle. 303 “So I can fall asleep better [carer using door alarm for wandering alerts]”. [Participant 22] 304 b. Mental wellbeing 305 Caring for a person with dementia did cause a strain on the mental health of carers. 306 “so it created a huge amount of stress as Mum was deteriorating being on her own all the 307 time”. [Participant 19] 308 Some of the issues were indeed compounded by carers having to look after their own families in 309 addition to a parent. 310 “my son, he has Asperger’s, so at home it can be quite stressful at home at times”. 311 [Participant 21] 312 The use of AT did offer relief to carers and provided reassurance to them. 313 “So, it means we know that she’s taken her tablets. We know that there’s music if she wants 314 to. We know she can use the bed”. [Participant 10] 315 Some of the AT also filled a need amongst carers for their own leisure and communication needs. 316 “I would be lost without my technology, socially, mentally I need it…I still run a [virtual] 317 group but I also am able to join other groups”. [Participant 17] 318 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 30 The AT also provided much needed time to carers for themselves and do tasks that they wanted to 319 complete. 320 “Well, I think it’s just that I can entertain Mum [using tablet computer] so that I can have 321 some time to just catch up on paperwork or make a phone call”. [Participant 19] 322 c. Social wellbeing 323 In addition to physical and mental health impacts, AT also had an impact on social wellbeing of 324 carers and the person with dementia. 325 “So, having the Facetime or the WhatsApp [on smart phone] has been very good, so she can 326 see them [family] and keep, keep in touch”. [Participant 14] 327 It also provided an opportunity for carers to continue to engage in social activities that they enjoyed 328 before the diagnosis and progression of illness for the person with dementia. 329 “we were still able to use assistive technology [GPS tracker, web camera] while mobile so 330 that we could, we could still go out and about and be able to get the alarms or the, the 331 contact if there was an issue [Participant 2]. 332 4. AT use in daily life: 333 From the survey, carers revealed that the AT had not significantly changed the level of care provided 334 to the person with dementia by them but reported that AT helped in reducing the need for 335 paid/formal care, which was one of the reasons for carers recommending AT use to others. 336 a. Coping with caring 337 AT is perceived by carers as supplementary to the care that they provide. As the abilities of the 338 person with dementia deteriorates with progress of the illness, AT helps carers cope with caring 339 needs. 340 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 31 “We would look at the cameras if we were uncertain whether she had eaten fully”. 341 [Participant 2] 342 AT was perceived as being integrated into the daily life and routines of the carers, especially when it 343 concerned the safety and welfare of the person with dementia. 344 “Well, all of them [CCTV, movement sensor, door alarm] become integrated. I mean I've got 345 the front, the exit monitors on all the time… because, you know, you can't be in the same 346 room as them [person with dementia] all the time, can you?”. [Participant 6] 347 Some carers also felt that the use of AT increased the frequency of checking-up on the person with 348 dementia and added to their care providing tasks. 349 “So, we’ve just resorted to checking her frequently [using CCTV], having the carer check her 350 once a day … that’s the best thing that we can do … Oh, it’s, well, the monitoring of it has 351 taken over our life”. [Participant 14] 352 b. Person with dementia using AT 353 Carers also reported that persons with dementia had varied ability in using the AT by themselves, 354 which meant carers had to continue to support them in the use of the AT. 355 “Despite the fact it has the day and the date [dementia clock] she [Person with dementia] 356 still sits and asks what day it is … so, we say, ‘Well, have a look at the clock’… the radio, I 357 thought it would be more useful than it is. It’s all, it’s quite easy to set up, but I think with all 358 of these things, they all require lots of support from somebody else”. [Participant 10] 359 Persons with dementia continued to struggle with using AT even with prompts from carers. 360 “When the alarm goes off, she goes, ‘What’s that, what’s that noise?’ ‘It’s your alarm watch, 361 are you gonna switch it off?’… ‘No, no’ and she just wouldn’t switch it off, she wouldn’t do 362 anything with it” [Participant 15] 363 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 32 c. Simple devices 364 Even though carers used AT, they combined these with non-electronic or simple devices/solutions 365 that worked in supporting and caring for the person with dementia. This combined use of simple and 366 electronic AT proved more effective in the level of care provided as well as reducing the stress and 367 anxiety associated with caring. 368 “I also write our shopping lists on there [white board] so, anything we’ve run out of I write 369 on there, or [Person with dementia] writes on there. So, we, we write our shopping list out 370 and then I’ll wipe it all off afterwards. So, it is very, very handy”. [Participant 1] 371 Carers also adapted existing devices when the intended use of the AT did not support the person 372 with dementia. 373 “And I’d adapted a seven-day pill box to make, you know, to, to make sure there’s, that each 374 compartment is one particular time [adapting electronic pill dispenser]”. [Participant 15] 375 5. Wider support systems 376 In the survey, carers reported that AT is an adjunct to supporting a person with dementia. The costs, 377 privacy concerns, support from wider care networks and support systems all played a role on how 378 carers used AT. 379 a. Support from others 380 Carers who used AT for moving and handling of a person with dementia needed ongoing support 381 from formal carers. However, this did not always work as intended. 382 “I know Social Services do not allow the [electric] hoist to be used by a single person. Well, 383 all the carers that I know we all did it on our own because there wasn’t anybody else”. 384 [Participant 13] 385 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 33 Even when AT supported a carer in caring tasks, they continued to rely on formal/paid carers to 386 provide much needed respite from constantly caring for a person with dementia. 387 “We managed to get a [paid] carer to come in two days a week for three hours so I had a 388 little bit of relief…so it’s had a dramatic effect on my life”. [Participant 4] 389 In some instances, AT provided access to healthcare professionals, however carers had to provide 390 extra support and time for the person with dementia to access these services. 391 “Although, most of it [GP consultation] is done over the phone now. And of course, you 392 know, there was one, there’s been several calls where you had to log into a website…in 393 order to have the [virtual] face to face consultation, which has been really 394 complicated…there’s no way she would have done that on her own”. [Participant 15] 395 b. Ethical issues 396 Carers clarified ethical issues associated with consent and continued use of AT when cognitive and 397 behaviour issues worsened. Carers let persons with dementia assume AT were innocuous devices 398 and this encouraged the continued use of the AT. 399 “At the moment she thinks that it [GPS tracker] controls her house-key. She doesn’t realise 400 it’s a tracker. So, she never ever leaves it because she knows she can’t get back in the 401 house”. [Participant 14] 402 Carers did set up what could be seen as intrusive AT with consent from a person with dementia, but 403 continue to use the AT, even when ongoing consent may be an issue, due to the progressive 404 cognitive decline. 405 “So we’ve got, we set up internal cameras with her full knowledge and agreement but I 406 don’t think she remembered about those after a while”. [Participant 2] 407 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 34 Carers also were aware of and keen to avoid privacy and data leaking issues, when sensitive 408 information could go out externally. 409 “Those smart speakers are a brilliant idea in theory, but I feel very unhappy about the idea 410 that every single sound that goes into that thing [smart home system] goes back in some 411 form or another to whoever”. [Participant 20] 412

413 The prevalence of dementia is steadily increasing[26]. The attention on person-centred care has 414 enabled people with dementia to live longer lives in the community. Without adequate support for 415 their progressive physical and cognitive needs, the majority of persons with dementia may end up in 416 care homes. Predictions are that availability and ability of carers to continue to support persons with 417 dementia in the community will not match demand[27]. Using technology and especially AT is seen 418 as a solution in supporting persons with dementia and carers. This study explains and describes the 419 impact of AT use among carers who look after persons with dementia living at home. Carers view AT 420 as an adjunct to providing care for the person with dementia and in addition use AT themselves for 421 leisure and improved social contacts and mental wellbeing. Carers continued to modify existing ‘off 422 the shelf’ AT to meet their unique needs and requirements and in most instances, carers were 423 satisfied with the use of AT. We have also explained how AT use in dementia care may not solely 424 rely on the dementia related needs of a person with dementia; it is also dependent on the co-425 morbidities of persons with dementia and the carers themselves. Carers with existing physical and 426 psychological challenges exacerbated by their own age and health, experience additional burden 427 while caring for a person with dementia and AT use in these instances helps reduce their burden and 428 improves their perceived quality of life. Similar to earlier studies[28] we found that older carers are 429 less likely to access and use new AT, as they may be unaware of these devices and are less likely to 430 request support in acquiring and continued use of these AT. We also explained how carers expressed 431 better satisfaction with AT, when it is integrated into daily life and how they adapted their role and 432 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 35 routines to better use the AT in supporting the person with dementia at home. Dementia changes 433 the dynamics of the relationships between the person with dementia and their carer[29], while 434 caregiving may be perceived as stressful, we found that AT does tend to strengthen the caregiving 435 relationship, as the AT itself becomes a socially connective device and facilitates additional time 436 spent using the AT together, especially for leisure and communication. While there exists 437 sophisticated AT and smart homes, we found the use of this alongside simpler devices and non-438 electronic AT enhanced satisfaction and met carers needs, as reiterated in one of the largest AT 439 Trial[30]. This study also highlights that AT augments the amount of time carers provide care for a 440 person with dementia, however there is a need for respite care[31,32] for carers, and social 441 communication with wider family members who could look after the person with dementia and 442 substitute for the main carer cannot be replaced with AT solutions. Most carers did not consider 443 data sharing and privacy issues connected with AT use, however some carers were specifically 444 concerned about this and limited the type of AT being used, this is likely to require further research 445 and policy intervention as AT devices become sophisticated and ubiquitous in use. This study 446 reinforces earlier findings[4,18] of a mixed picture of use and usefulness of AT and adds to the 447 literature on the impact of AT use on carers. AT alone or in combination with simple devices, formal 448 carers and other interventions has the potential to be an important addition to efforts to improve 449 the safety and welfare of people with dementia, who wish to continue to live at home and that of 450 carers who support them. 451 Strength and Limitations: 452 The interviews provided an opportunity to explain and delve deeper into the findings of the survey 453 that explored the experiences and impact of AT use in dementia care amongst carers. Selecting 454 participants from across the UK ensured that geographical limitations of procuring and using AT did 455 not limit the transferability of our findings. The interviews were conducted over telephone due to 456 restrictions from the COVID-19 pandemic and this might have missed out on non-verbal cues and 457 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 36 interactions. Despite our repeated efforts, only one participant in the interview, was from an ethnic 458 minority group. It would be important to further investigate how carers from Black, Asian or other 459 Minority Ethnic communities in the UK are using AT and if they are impacted by using AT. 460

461 This study demonstrates that AT has a beneficial impact on carers who look after persons with 462 dementia. AT devices with the right functionality and when used at those times when needs arose 463 are regarded as useful and satisfactory and are integrated into daily life and routines. Technology 464 development for dementia care requires involvement and consultation with carers. There is a 465 requirement for policy, funding and clinical practice change to a long-term care model that not only 466 facilitates prevention and risk reduction but also encourages education and accessibility of AT to all 467 carers. 468 Abbreviations: 469 AT - Assistive Technology 470 CATEQ – Carers Assistive Technology Experience Questionnaire 471 SF-12 - 12-item Short Form Health Survey (version 1) 472 All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 37 Declarations: Ethics approval and consent to participate: This study was granted ethical approval by the University of Oxford Central University Research Ethics Committee (Reference number: R57703/RE001). Participants gave informed consent for the survey and interviews. Consent to publish: Not required Availability of data and materials: The datasets generated during the study are available from the corresponding author on reasonable request. Competing interests: The authors declare that they do not have any competing interests. Funding: This research is part of a DPhil in Population Health at the University of Oxford and received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. Authors' contributions: VS, CJ and MP conceived the design of the study. VS drafted this version of the manuscript with critical revision and input from MP and CJ. All authors have read and given approval for this version. VS is the guarantor of the manuscript.

All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 38 Authors would like to acknowledge support from the three members of the patient and public engagement and involvement group set up as part of the carers’ experience of assistive technology use in dementia study. Authors' information: VS is an Occupational Therapist and postgraduate student registered for his DPhil at the University of Oxford exploring informal carers’ experience of assistive technology use in dementia. MP is an Associate Professor within the Health Services Research Unit (HSRU), Nuffield Department of Population Health, University of Oxford. CJ is Professor of Health Services Research and Director of the HSRU, Nuffield Department of Population Health, University of Oxford. MP and CJ have extensive experience in research methods and are joint supervisors of VS for the DPhil. All rights reserved. No reuse allowed without permission. (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. The copyright holder for this preprintthis version posted April 10, 2021. ; https://doi.org/10.1101/2021.04.08.21255110doi: medRxiv preprint 39

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