Funded by the NIHR School for Social Care Research, this 3-year study investigated what (if any) may be an optimal time for people living with dementia to move to a care home.
A literature review, qualitative interviews and a factorial survey were conducted over the course of 3 years to reveal a complexity of findings around what may be seen as an ‘optimal’ time for a care home move. We found that the ‘right time’ for any move was highly individual, contextual and depended on myriad factors other than symptom severity. These include the wellbeing of the person living with dementia, family members’ ability to support them and the type and availability of care home places.
An initial systematic review of the literature highlighted that in many cases decisions about moving to a care home were largely driven by whether people with dementia and carers ‘feel ready’ for a move, often seeing a move as a ‘last resort’.
The research drew on detailed interviews with 5 people living with dementia (who had recently moved to a care home) and 21 family carers; as well as 20 social workers and 20 care home managers, and investigated whether there was an “optimal time” for a care home move.
Dr Laura Cole, who conducted many of the interviews, found that all family carers experienced heightened emotionality around this topic, with many expressing frustration, grief, guilt and sorrow. There was very little support for family carers from local authority adult social care services and many were frustrated by a lack of easily available advice. Many felt the decision appeared more complex when taken at a time of crisis; and a number of family carers ruminated on their decision long after it had happened.
Only five people living with dementia – all of whom had recently moved to a care home – were interviewed for the study as many care home residents were not able to talk about the decisions. But within that small sample, there were strong indications that involving the person living with dementia in the decision helped them adapt to their new surroundings.
We found that social workers tended to prioritise the wishes of people living with dementia regarding moving to a care home, although the need to make best-interests decisions overrode these on occasion. Many noted the importance of managing risks and family carers’ ability to cope alongside the belief that people living with dementia should continue to live at home for as long as possible. A follow-up survey of dementia care practitioners reinforced this notion, and many maximised home care support before recommending a care home move.
However, some care home managers who were interviewed by the researchers, while acknowledging the value of time at home, noted that moving to a care home early could help staff get to know people before their symptoms became too severe. Moving earlier could also enable people living with dementia to be more involved in the decision.
Like social workers, care home managers said that joining waiting lists or making use of short-stay or respite care could help people prepare for a later long-term move.
Speaking to social care professionals and care home managers, as well as intermediate steps such as joining care home waiting lists and using respite offered by care homes helped many to ease what for some was a difficult, emotional, complex decision. It also sometimes help people prepare for a later long-term move.
Commenting on the findings, Professor Jill Manthorpe, a member of the research team, said: “We would like to shift the idea that moving to a care home is a failure or a last resort – it’s another step in people’s care journey that may be necessary, the optimal time will depend on the person living with dementia, their carers and local facilities.
Kritika Samsi, is Research Fellow at the NIHR Health & Social Care Workforce Research Unit.
Acknowledgements: Thank you to all participants for their time and for sharing their views; and to members of the study Advisory Group for supporting this study. Thanks also to Alessandra Bisquera for her statistical expertise during the factorial survey.
Research Team: Dr Kritika Samsi, Dr Laura Cole, Professor Jill Manthorpe
Please contact Dr Kritika Samsi for any further details about our study findings: firstname.lastname@example.org
Acknowledgement and disclaimer: This blog post summarizes independent research funded by the National Institute for Health Research School for Social Care Research (NIHR SSCR). The views expressed are those of the authors and not necessarily those of the NIHR SSCR, NHS, the National Institute for Health Research or the Department of Health and Social Care.