The research found the optimal time – if any – to move to a care home depends on many different 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.

But dialogue with 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, can help ease what for some is an agonising decision. Often the decision seemed to be harder if it had to be taken at a time of crisis, the research suggested.

“We would emphasise the value of conversation – really talking to people with the right experience – in managing potential distress and exploring options as early as possible,” said Dr Kritika Samsi, who led the team at NIHR Health & Social Care Workforce Research Unit (HSCWRU). She continued: “It was clear from this study that determining the ‘right time’ for any move was highly individual, contextual and not dependent on the ‘stage’ of someone’s dementia.”

Her colleague Dr Laura Cole who interviewed many of the people affected by dementia in this study added: “Moving to a care home was a highly emotional time for many families. And some continued to ruminate on their decision long after it had happened. It is important to bear in mind that there is no perfect time – but the aim is that everyone’s point of view is taken into account.”

‘Feeling ready’ for a move to a care home

The research team found that existing evidence says that in most cases decisions about moving to a care home are largely driven by whether people living with dementia and their family carers ‘feel ready’ for a move. This consideration is also strongly influenced by negative perceptions of care homes being a ‘last resort’ option especially when people are unfamiliar with care homes and what they can offer.

Interviews with family carers underscored the “frustration, grief, guilt and sorrow” some people experience when trying to decide whether their relative should make a move to a care home.

Many family carers – especially self-funders – felt poorly supported by local authority adult social care services and were frustrated by a lack of easily available advice.

When deciding whether to take a vacancy at a care home, families notably valued facilities’ ‘feel’, whether staff seemed caring, and the ease of visiting. Some found that having used the short-break services of a care home for respite or having been in contact by joining a waiting list helped establish a relationship with the care home’s staff.

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.

Maximising time at home

Practitioners tended to prioritise the wishes of people living with dementia when it came to the time of moving to a care home, although the need to make best-interests decisions overrode these on occasion.

While noting the importance of managing risks and family carers’ ability to cope, many social workers believed 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.

Moving to a care home ‘not a failure’

Commenting on the findings, Professor Jill Manthorpe, another 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.

“Where possible, conversations in this area may be helpful if held in advance, although we acknowledge that for some people it’s too distressing – you cannot enforce care planning if people feel unable to do it.

“Our study also suggests people may settle better in a care home and enjoy life there more if they have been involved in the decision rather than experiencing it as a crisis – our sample was too small to draw firm conclusions but future work is needed to investigate this further.”

Full summary findings

NIHR SSCR (2019) Investigating ‘Optimal Time’: Perspectives on the Timing of People Living with Dementia Moving into Care Homes, Research Findings 88, NIHR School for Social Care Research, London.