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Is it worth it? Carers' views and expectations of residential respite for people living with dementia during and beyond the COVID‐19 pandemic

Abstract Objectives The Covid‐19 pandemic has taken a heavy toll on many people living with dementia and carers. Caring for a person living with dementia at home with limited avenues for support and a break challenged many carers. Care homes in England closed to visitors, with very few offering opportunities for a short‐stay. We investigated impact of Covid‐19 on views and expectations of carers of people living with dementia about residential respite. Methods/Design Qualitative interviews with 35 carers were conducted March–December 2020: 30 women and 5 men, with ages ranging 30–83 years. Interviews explored experiences, views of residential respite, and expectations post‐Covid. Data were thematically analysed and salient concepts were drawn out and discussed within the research team and study advisers. Results Three themes were identified in transcripts, relating to impact of Covid‐19 on views and expectations of respite: (1) Carers described regularly negotiating risks and stresses of Covid, weighing up how to prevent infection and changing family arrangements to facilitate caring; (2) Carers were balancing different needs, prioritising needs of their relatives while bearing the impact of cumulative caregiving responsibilities. (3) Uncertainty about future residential respite continued, in terms of availability, ongoing restrictions and trustworthy information sources. Conclusions Residential respite is a positive, acceptable option for some carers to get a break from caring. Covid‐19 may have heighted some of caregiving stressors and there may be an increased need for a break. Views of care homes developed during the pandemic suggest that individual confidence to use respite may need to be rebuilt.


| INTRODUCTION
The global Covid-19 pandemic has taken a significant toll on many people living with dementia and their family and friends. In the United Kingdom (UK) social restrictions and closure of community services placed additional strain on dementia carers 1-3 and carers more generally. 4 While some healthcare and community services moved online; with varied accessibility and acceptability, 5 personal care, socialising, and monitoring at home often continued or became entirely undertaken by family members. For those receiving domiciliary services (home care) these services were badly affected by staffing shortages and some families, fearing infection, declined such support. 3 There is evidence that moves to care homes during the first year of the pandemic decreased with family carers stepping in to support relatives at home, for what turned out to be longer than expected by some. 6 In England and other parts of Europe many care homes were severely affected during the pandemic by both rising rates of infections and deaths among residents and staff. 7,8 Care homes closed to visitors to limit infection; and those that offered respite care (a temporary overnight stay or day care) either stopped this option (also known as short-break or replacement care) or offered it with numerous restrictions (such as isolating in one's own room for 2 weeks before mixing with other residents). While there is some mixed evidence of when residential respite care in a residential facility for individuals may be effective, 9,10 a temporary break of any sort provides valued support to some families and people living with dementia alike. 1 While some service offers moved online [11][12][13] there were fewer opportunities to arrange out of home breaks. In this context, we sought the views and expectations of family carers of people living with dementia about residential respite in a care home, and its postpandemic future. This helps to partially address Neville and colleague's 14

| Study approach
Using a qualitative approach, we undertook one-off interviews via telephone and video-call applications (apps). We offered participants the choice of video or telephone depending on which they felt comfortable with, as video interviews were still a new experience for many at the beginning of our study. The study followed principles of rigour or trustworthiness, including applying credibility and transferability (thick description of study context and individual participant characteristics), aiming for authenticity and transparency in reporting (clear paper trail), and conducting researcher reflexivity (thoughtful description of research team and considering the various strengths and limits of each member); while acknowledging the limits of these principles. 15

| Recruitment
We aimed to interview family carers of older people living with dementia from three categories of interest to the study: those who had experiences of residential respite, those who had declined residential respite, and those who were planning to access residential respite but had not yet taken it up. We further aimed for a diverse sample (ethnicity, gender, age, relationship type) to gain a breath of knowledge and experiences. We registered the study on the Join Dementia Research network and advertised via Twitter, as well as publicising the study through local and national voluntary groups and care home networks. Recruitment was undertaken until data saturation was achieved, 16 or when no new trends were identified during interviews amongst each of the different subgroups of participants.

| Data collection
All interested and eligible participants were interviewed at a mutually convenient time. We audio-recorded all interviews with permission. Original interview topics which were pre-pandemic focused simply on the experience of residential respite so these were re-designed to include questions about the pandemic. The final semi-structured interview questions that are relevant to this paper focused on capturing carers' experiences of supporting a relative or friend living with dementia during the pandemic, views of residential respite during the pandemic, and expectations of the future of residential respite. Participants' demographic information was also recorded.

| Ethical considerations
We obtained ethical approval from King's College London Research Ethics Committee (ref. HR-18/19-10641) in August 2019 and sought an amendment in June 2020 for a refocus of study aims due to Covid-19 before proceeding. We followed ethical processes and reassured participants of confidentiality and anonymity, including informing participants of their right to withdraw or terminate the interview.
Processes of informed audio-recorded consent were undertaken before proceeding with interviews. The interviewers were alert to the possibility of distress and planned to offer to stop or pause the interview should the participant appear to feel uncomfortable or similar. A safeguarding protocol was in place should we hear about or witness possible harm, and a 'contact sheet' of helpful resources was made available to participants.

| Data analysis
Interview audio recordings were transcribed verbatim, and first transcripts were analysed using principles of thematic analysis. 17 Inductive analysis focused on identifying key trends or broad themes.
Initial line-by-line coding was conducted on a first randomly selected set of participant transcripts. A broad coding framework focusing on descriptive themes was developed from this analysis which was then applied to all transcripts. When all data were coded at a descriptive level, key themes were discussed within the study team and higher order interpretations were applied to the coding framework.
Analytical discussions with the rest of the study team enabled different perspectives and assumptions to be challenged. The process of analysis was clearly documented in a rigorous paper trail via notes and memos to ensure authenticity and demonstrate rigour. The research team was female, with backgrounds in gerontology, health and care research, family caregiving, and care home governance, each with over 10 years' experience in dementia and social care research.
While this aided the recruitment and data collection parts of the study, we were mindful during analysis to bracket our experiences and knowledge of extant literature and remain true to participant accounts. Emerging findings were presented to the study advisory group (comprising care home providers, social care and dementia experts, and people affected by dementia) in an online meeting for their reflections on how they accorded with their pre-Covid experiences. We have adhered to the Standards for Reporting Qualitative Research 18 to demonstrate transparency, authenticity and credibility.

| PARTICIPANT CHARACTERISTICS
We conducted 34 interviews with 35 carers (2 carers were jointly caring for a relative). Four were former carers who shared their views about residential respite (for 2 their relative had moved pre-Covid to a care home and for the other 2 their relative had recently died).
There were 30 women and 5 men, age range 30-83 years. Thirty were White British. There were equal numbers of adult children and spouse/partner carers. All but two reported being heterosexual, and 29 participants lived in owner-occupied homes, the majority housing tenure in England (see Table 1). All interviews were conducted in English and all participants lived in England.

| FINDINGS
Three salient themes identified in transcripts related to views and expectations of residential respite were: (1) Negotiating the risks and stresses of Covid-19, Each theme and associated sub-themes are described more fully below, with a participant quote to typify the theme ( Table 2). No within-or between-group differences were noted amongst participants who had accepted, declined, or were awaiting respite.

| Preventing infection
Participants described several lengths they went to prevent the spread of Covid-19 infection. Usual sources of social contact and daily respite or breaks (such as day centres and church groups) closed SAMSI ET AL.
-3 at the start of the UK government's first national lockdown on 23rd March 2020. However, many carers reported that they avoided shops, postponed non-urgent medical appointments, and cancelled homecare workers in order to cease external social contact and its risks of infection. One participant explained how she tried to keep her husband safe, and why any type of care outside of the home (including residential respite) was not an option she considered:

| Different carer "breaking points"
There were reports of additional and increased challenges when caring for someone living with dementia at home during the pandemic. These included social networks contracting, independence declining, and cognitive impairment increasing in their relative.
Carers variously described feeling isolated, burnt out, and tired, as several of their usual channels for face-to-face social contact and getting a break, meeting family and friends, were no longer available. The term 'burnout' was given as the reason why a break would be necessary once things felt safer and several participants acknowledged that they badly needed the physical and mental break of residential respite. However, carers recounted different experiences according to their feelings about managing their relatives' symptoms, and different near "breaking points" were described:

| Information sources
We asked participants about their sources of information during

| DISCUSSION
Carer stress when supporting people living with dementia has long been recognised 19 and several options have been developed to ameliorate this, including respite at home and in residential facilities.
Willingness to take a break in the form of residential respite however will still depend on individual confidence, information, family support and not least the recovery of the care home sector so that it can meet demand and develop trusted provision. As Phillipson and colleagues observed, 20 we need to move beyond simple categorising of carers as 'users' or 'non-users' of respite, and this may be particularly so in the pandemic context.
Like others reporting carers' experiences 21 and for dementia carers, 5 we found some cancelling of homecare services and minimising of social contact during the pandemic which offered security yet compounded isolation. Additional family support was welcomed when it occurred, but may have suppressed need and been temporary. 22 Fears of future pandemics will be interesting to assess in research exploring the acceptability of residential respite care and its addition to the factors influencing take-up. have found the pandemic has further reinforced their antipathy to any residential respite care, 24 and professionals will need to be skilled in supporting people to take a break that may be home based.
Unlike accounts of day services providing respite whose staff were sometimes redeployed to contact previous attenders, 3 we heard no reports from our interview data of residential respite services contacting regular clients, although the severe pressures on care homes may well account for this. Our participants were mainly from relatively affluent groups as judged by high levels of owner occupation -although this is the majority housing tenure in England 26 -and regular internet use.
Residential respite is a means-tested service in England, and carers SAMSI ET AL. -7 have elsewhere mentioned that costs may be prohibitive when selffunding. 4 This limits the generalisability of this study although we had a broad sample group in terms of respite use, gender, relationships, age, religious and ethnic diversity. Many of the problems reported by our participants were also mentioned in the Alzheimer's Society's 1 survey of nearly a thousand carers. Our interviews spanned several months, starting in March 2020 when the pandemic was fully acknowledged in the UK, and covering periods of stronger and weaker restrictions up to December 2020; we did not find substantial differences however in carers' reports of respite access other than an impression of growing tiredness. This reflects the continued restrictions on care homes unlike homecare services which seem to have been curtailed initially but then resumed for older people. 27

| Limitations
This paper is limited by focusing only on the views of carers and not their relatives living with dementia who had few opportunities for social interaction or a break during the pandemic too. The sample was predominantly White British and female, despite efforts to recruit a more diverse sample. Findings therefore do not capture some of the perspectives which may have been unique to specific groups, such as fears of Covid-19 amongst black and minority ethnic groups.
Most participants owned their own homes, which may have had a bearing on their ability to pay for their own residential respite place.
The strengths of the study lie in there being an equal mix of spouse carers and adult children, and the interviews being conducted at a unique contextual time.