Research reveals increase in residents’ care needs risks undermining model’s flexible care provision and benefits to people living with dementia
Extra-care housing (ECH)’s adaptable community-based social care model is playing a valuable and supportive role in older people’s lives, but the wider context of severe sector pressures risks diminishing this, an NIHR SSCR-funded study has found.
The ‘ECHO’ research found residents appreciated extra-care schemes’ ability to deliver flexible care and support.
It also underscored extra-care’s potential for improving the wellbeing of people living with dementia by responding to their changing needs over time.
But the research found the balance of care needs at participating schemes was changing, with fewer residents having lower or no needs than in the past. Care workers also reported feeling frustrated at not being able to spend enough time with residents.
The study drew on the experiences of people at four extra-care schemes, including one specialist dementia facility. Fifty-one residents aged between 54 and 96 were interviewed, along with staff, managers and commissioners.
In most cases, changes in residents’ need – whether a developing additional need, such as social isolation, or an immediate need for more care – were identified by care workers. Local authorities tended to respond positively, albeit at varying rates, to requests for increased funding.
The flexible nature of care provision offered in ECH was appreciated by most participants, the study found, with many citing it as a reason for entering extra care.
But a minority of residents at two sites reported being declined additional care or support they required at night, because of fewer staff being available on site at those times.
Additionally, some mentioned staff being too busy to stop and talk, or of visits happening late or being rearranged.
Care workers, whose shifts were invariably organised as a ‘run’ – with allotted times, durations and tasks for each resident – also described frustrations at sometimes being unable to spend extra time with people feeling lonely or distressed.
Each of the three non-dementia specialist participant schemes reported rising care needs among residents, driven by factors such as local authorities insisting that nominees have an existing need, or choosing to nominate people with complex needs.
As a consequence, fewer residents were engaging in social activities and in helping run schemes – key elements of extra-care housing – with greater pressure being placed on workers, the study found.
Managers reported that the ‘balance of care’ underpinning the extra-care model was becoming distorted. In some cases, local authorities were also failing to respond quickly to requests for care needs to be reassessed for increased payments.
“There’s a need to understand the waxing and waning of care needs to ensure that when you need a bit more support to get social activities up and running and people taking part, you have the ability to do that,” Dr Cameron said.
In dementia settings – as in non-specialist ones – the research supported extra-care housing’s potential to respond to the care needs of residents as they change over time.
But, as with residents with other needs, the research findings reinforced the need for sufficient resources, including time, to offer a truly person-centred approach to people living with dementia in extra-care settings. Some residents living with dementia were found to seem isolated and lonely.
The study report also warned that some residents living with dementia continued to face stigma and prejudice from their peers.
Responding to the study, Jeremy Porteus, managing director of the Housing Learning and Improvement Network, which brings together, housing, health and social care professionals, said:
He added: “For the first time, it also demonstrates how services have been commissioned to enable people with increasing dependency lead more independent lives in a housing with care setting – including those experiencing early onset dementia.
Full summary findings
NIHR SSCR (2018) Provision of Social Care in Extra Care Housing: the ECHO Study, Research Findings 73, NIHR School for Social Care Research, London.
This study funded by the NIHR School for Social Care Research and led by Dr Ailsa Cameron in the School for Policy Studies at the University of Bristol.