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Care homes struggling to provide adequate end of life care for people with dementia

Author: Tom Moran
07 March 2016

New research published this week has found that the end of life needs of many people with dementia are not being met in many care homes in the UK.

The authors of the research – published in the journal Dementia – argue that an integrated approach, that includes improving the communication and relationships between various care providers, is needed to tackle the problem.

Around 400,000 people currently live in care homes in the UK, and it is estimated that 80% have either dementia or another form of cognitive impairment.

More than half (53%) of people with dementia in the UK will die in a long-term care institution.

The research – which was funded by Marie Curie and carried out by the Marie Curie Palliative Care Research Department at University College London – was based on interviews with health and social care professionals in London who care for people with dementia in a variety of settings.

The interview responses were grouped by the researchers into three main themes that could prevent high quality, integrated care:

  • the "social and economic system" (how society thinks about and treats people with dementia)
  • care home organisational issues
  • a fragmented approach to care.

Commissioners of health services, the research found, were more focused on the issues surrounding the early stages of dementia rather than end of life needs.

Interviewees also criticised the "profit-driven nature of care homes", which leads to problems with staffing levels, a high staff turnover rate, heavy workloads and poor pay and job satisfaction.

"There is, overall, a poor knowledge of how best to manage common symptoms in people with advanced dementia," Said Dr Liz Sampson, reader at the Marie Curie Palliative Care Research Department and one of the authors of the research.

"There are various reasons for this breakdown in care but the findings suggest that a more integrated, multidisciplinary approach that improves communication between all the care providers involved would bring about improvement. However, the funding and resources need to be available and for this there needs to be more recognition and commitment from policy-makers."

Dr Sabine Best, head of research at Marie Curie, added: "Research of this kind shines a light on the reality of care for people with advanced dementia in the UK. Despite having highly complex needs, many people in care homes are effectively cut off from specialist care and support.

"A lot needs to happen to ensure that they are being identified and appropriately cared for – we need better communication and relationships between care professionals and services, and improved training so that care home staff are able to tell when someone is in the later stages of the condition or approaching the end of their life."

The research was published in the journal Dementia – it can be read in full on the journal’s website.

See more articles in Research

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