There are more than 400,000 older people living in care homes in the United Kingdom (UK) and around 80% of those people are likely to have dementia (SCIE, 2020). Care homes can be funded by the local authority, the National Health Service (NHS) or privately: it is estimated that around 40% of residents in care homes are self-funders (Baxter and Glendinning, 2015).
There is a perspective, widely held in society and often seen in my practice experience, that moving to a care home is the last resort, when all attempts to promote independence have failed (Blood and Guthrie, 2018). This esteemed status that public and policy discourses confer on independence can reinforce a narrative of failure, pity and burden when thinking about older people, especially in care homes (Nelson-Becker et al, 2020). The COVID-19 pandemic has also shone an uncomfortable light on care homes and added to a sense of fear and the lack of choice afforded to people in residential care.
39% of people aged over 65 who are living with dementia are living in care homes. So, despite being a keen qualitative researcher, I make no apologies for using statistics in my introduction as it contextualises the research that this blog discusses. Kritika Samsi, Laura Cole and Jill Manthorpe’s study (2021) explores the perspectives of people with dementia and their family carers and examines the factors involved in the timing of the decision to move to a care home.
The authors clearly outline the methods used in this qualitative study. They carried out 18 in-depth interviews with 21 family carers and 5 people living with dementia (some people with dementia were interviewed with their carers). The interview questions were devised following a systemic review of the literature and the data collection was shaped by input from a Study Advisory Group, made up of 12 stakeholders with wide-ranging professional and personal experience.
The participants were people aged over 65 living with dementia in care homes and their family carers. The move to the care home needed to have taken place in the preceding 6-12 months (to avoid undue distress associated with settling in). All participants had the capacity to consent to taking part in the research.
Participants were recruited in the South of England, through networks and interested care homes. The interview questions focused on the circumstances and decision-making processes around the move to a care home, what helped and what hindered and on the timing of the move. The face-to-face interviews were audio-recorded and transcribed, and analysed thematically.
Overall, the study findings highlighted the conceptual presence of a ‘tipping point’, when the move to a care home was decided. This varied between participants: for some it was sudden, often precipitated by an event or crisis, whereas for others it was a much more gradual realisation.
The three main themes identified by the authors are summarised here:
- The participants’ narratives were overlaid with emotion. The authors attributed higher octane emotions, such as guilt, frustration and stress, to the accounts of family carers; this was particularly the case for those carers who had needed to make decisions on behalf of the person moving into the care home.
- A combination of factors or ‘triggers’ often led to the ‘tipping point’ around making a decision to move to care home. The main ones discussed were: A build-up of stressors which led to the feeling that the carer or the person with dementia could finally no longer cope; Exhausting all other care options; The person with dementia wanting to move, due to a recognition that they needed more support than they could get at home; Weighing up the risks of living at home against the benefits, with carers often feeling that when the risks outweighed the benefits that this was the time to move; An ‘instinct’ that this was the right time to do it.
- Several factors helped or hindered the decision-making about when to move to a care home. Early planning was helpful, particularly identifying a preferred care home in advance and joining the waiting list. Prior knowledge and familiarity with care homes also assisted with decision-making. A significant barrier identified was that many participants had received little support or information about funding arrangements; this was a particular issue for self-funders. Having additional support to make the decision was important: for some, an unexpected source of that support was from the care home manager.
The study identifies a range of complex and personal factors that come into play for people with dementia and their carers when deciding the best time to move to a care home. It suggests that there is limited understanding by family carers and older people of funding arrangements or entitlements, and it often falls to the care home providers to provide information.
The findings contribute to evidence that carers and people with dementia generally postpone moving to a care home until all other options have been explored; this resonates with the idea of the care home as a last resort. Early planning in building relationships with care homes can support decision-making and mitigate against a move feeling like a crisis, but the authors note that this “may be socially or professionally disapproved of”.
Strengths and limitations
One key strength of the paper is that it is easy to read and presents its finding in a concise and accessible way. It focuses on hearing the voices of people with dementia and their family carers on a topic which is often overlooked and hard to research. In doing so, it identifies what might help or hinder the timing of a decision to move to a care home. The involvement of a Study Advisory Group demonstrates the research’s commitment to the principles of involvement.
This is a qualitative study, so the sample is small. One limitation of the study is the emphasis on the accounts of carers over people with dementia. This is acknowledged by the authors but there is limited discussion of the impact that this might have on the findings. There is a lack of diversity in the participants recruited to the study – they are all white and mostly female – and they were predominantly self-funders. These circumstances are likely to impact on the experiences of the participants and notably the autonomy they may have had around decision-making. The study was also limited to a fairly small geographical area (South of England) which may have an impact on the data collected.
Implications for practice
The accounts gathered in this study appear to support the view that the move to a care home is a difficult and emotional experience, especially for family carers, and one that is often borne out of necessity when living at home is no longer seen as viable. The study presents some evidence that planning for such a move by familiarity and engagement with care homes may be helpful. This challenges us to confront the negative view of a care home as the last resort, which in my view often means that a move happens swiftly and with limited opportunity for thought or staged transition. These opportunities for planning are less likely for people whose care is funded by the local authority or for people who live alone or with no family or support networks.
This study was conducted retrospectively once people had moved to care homes. It would be interesting to gain more insight into the decision making around care home moves, and some of the structural influences at play, by perhaps conducting a longitudinal study and interviewing people before and after they have moved.
The study highlights that there is limited understanding by family carers and older people of funding arrangements, and it often falls to the care home providers to supply information. With the proposed reforms to adult social care announced recently, support and independent advice around care funding is vitally needed. My own doctoral research is looking at the role of social workers in relation to care homes; the strength of emotion demonstrated by carers in the study, and the paucity of information, reinforces my view that social workers could have a stronger role to support people with dementia and their families with this difficult transition, self-funders or otherwise.
On a final note, while reading this paper, the spectre of the pandemic with its overlay of how care home residents were neglected and their rights overlooked (Amnesty International, 2020; Carter Anand et al, 2021) was a nagging voice in my ear. It is interesting to reflect on how this might impact on decision making – whether to exacerbate fears about living in a care home, or to add to family members’ concerns that a loved one would not be able to manage isolated and alone at home. The effect of the pandemic on people living with dementia in care homes is certainly an area for further research.
Conflicts of interest
Samsi. K., Cole, L. and Manthorpe, J. (2021) ‘The time has come’: reflections on the ‘tipping point’ in deciding on a care home move. Aging and Mental Health. [Online]. Available at: https://www.tandfonline.com/doi/full/10.1080/13607863.2021.1947963
Amnesty International (2020) ‘As If Expendable’ [Online] Available at: https://www.amnesty.org.uk/care-homes-report
Baxter, K. and Glendinning, C. (2015). People who fund their own social care: scoping review. Scoping review, p.50. [Online]. Available at: http://www.sscr.nihr.ac.uk/PDF/ScopingReviews/SR11.pdf.
Carter Anand, J., Donnelly, S., Milne, A., Nelson-Becker, H., Vingare, E., Deusdad, B., Cellini, G.,Pregno, C. (2021) The covid-19 pandemic and care homes for older people in Europe – deaths, damage and violations of human rights. European Journal of Social Work 1-12
Blood, I. and Guthrie, L. (2018) Supporting Older People Using Attachment-informed and strengths-based approaches London: Jessica Kingsley
Nelson-Becker, H., LLoyd, L., Milne, A., Perry, E., Ray, M., Richards, S., et al. (2020) ‘Strengths-based social work with older people: A UK perspective’, in Mendenhall, A. and Mohr-Carney, M. (eds.) Rooted in Strengths: Celebrating the Strengths Perspective in Social Work
SCIE (2020) Dementia at a glance. Available at: https://www.scie.org.uk/dementia/about/