Care homes are struggling to manage and meet the needs of those with dementia who are approaching the end of life.
The findings of research funded by Marie Curie and carried out by the Marie Curie Palliative Care Research Department at University College London, are particularly concerning as 80% of the estimated 400,000 people in UK care homes have dementia or another form of cognitive impairment. The majority of people with dementia in the UK (53%) will die in a long-term care institution.
The research, based on in-depth interviews with health and social care professionals, reveals that, despite having complex needs, people with advanced dementia often receive fragmented and inadequate care at the end of life. Many who were interviewed felt strongly that care homes were “ill equipped” to provide adequate end of life care for residents with dementia.
Care home staff reported poor morale and frustration that they are not provided with adequate training and support to recognise and respond to the complex symptoms presented by people with dementia.
Many of those interviewed highlighted that care homes are often isolated within the wider health and social care network and may not have access to specialist resources, such as palliative and end of life care services, in the same way that NHS-based services, such as hospitals do. Where help from external specialists such as speech and language therapists or tissue viability nurses was required, waiting times resulted in delays to care.
There was consensus among those interviewed that a combination of 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 provided to care home residents with advanced dementia.
Furthermore, the findings suggest that health and social care commissioners are more focussed on issues related to the early stages of the dementia.
Dr Liz Sampson, co-author of the research, said: “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. 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”
Dr Sabine Best, head of research at Marie Curie, said: “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.”
People at the advanced stages of dementia may become doubly incontinent, unable to communicate their needs and often have multiple co-morbidities such as diabetes and hypertension. They are at increased risk of hospitalisation, following chest and urinary tract infections and frequently experience pain, anxiety and swallowing problems.
The research, published in the journal Dementia, is part of the COMPASSION Programme: Care Of Memory Problems in Advanced Stages: Improving Our knowledge. This is a 3 year programme, grant funded by Marie Curie which aims to inform the development of interventions to improve end of life care for people with dementia.
George McNamara, head of policy at Alzheimer’s Society, said: “Seventy 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.”