Care homes struggle to care for residents with advanced dementia

Care homes in the UK are struggling to provide adequate care to residents living with advanced dementia, new research has revealed.

The research raises concerns over the needs of residents with dementia not being met, specifically those who require end-of-life care.

Conducted by Marie Curie Palliative Care Research Department at UCL, the study highlights the ‘fragmented’ and ‘inadequate’ end-of-life care experienced by dementia residents.

The report found that low staff moral and insufficient training has left care homes staff unable to recognise and respond to the complex needs of presidents with advanced dementia, in the same way NHS services, such as hospitals do.

Co-author of the research and reader at the Marie Curie Palliative Care Research Department at University College London, Dr Liz Sampson commented: “The research has highlighted that care home staff may not have the skills to recognise when someone with dementia is in the later stages of the condition or at the end-of-their life.

'More integrated, multidisciplinary approach required'

“There is, overall, a poor knowledge of how best to manage common symptoms in people with advanced dementia. 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.”

Published in the journal Dementia, the report is part of the three year 'COMPASSION' programme: Care Of Memory Problems in Advanced Stages: Improving Our knowledge. The programme aims to inform the development of interventions to improve end of life care for people with dementia.

The report revealed barriers to proving high-quality care, this included: isolation from the wider health and social care system and a lack of access to specialist support, such as end-of-life care services.

Figures from Alzheimer’s Society indicate that 80 per cent of UK care home residents have dementia or another form of cognitive impairment, while the majority if people with dementia in the UK will die while living in a care facility.

People living with advanced dementia could become doubly incontinent, unable to communicate their needs and have multiple co-morbidities such as diabetes and hypertension. As well as being at increased risk of hospitalisation after chest, urinary tract infections and experience frequent pain, anxiety and swallowing problems.

The research is based on in-depth interviews with a range of health and social care professionals and reveals that despite people with advanced dementia, many people interviews said they felt that care homes were ‘ill equipped to provide adequate end-of-life care.

Care home revolution

Head of policy at Alzheimer’s Society, George McNamara, said: “70 per cent of care home residents live with dementia and have complex needs, particularly in the advanced stages of the condition. It is desperately concerning that care home staff don’t feel adequately trained or supported to provide specialist end-of-life care. The reality is that, without this, people with dementia could be denied a dignified and pain free death. Worst of all, this can often result in the human misery and economic cost of an emergency hospital admission in their final days.

“We urgently need a care home revolution to transform the quality of the care and support provided. The workforce should be well-trained and invested in, on a par with the NHS, and not a poor relation.”

The study revealed that many respondents believe that UK Government strategy, increasing governance of care processes, limited funding and the business-focused nature of care homes, all detract from the quality of care being provided to residents with advanced dementia.

While health and social care commissioners remain focused on issues relating to the early stages of dementia.

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.”