New research has raised concerns regarding the care of those with advanced dementia in care homes across the UK. It has highlighted that the needs of many people in the later stages of dementia are not being met and that care homes may struggle to manage those with the condition who are approaching the end of life.
The findings 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, funded by Marie Curie and carried out by the Marie Curie Palliative Care Research Department at University College London, is based on in-depth interviews with a range of health and social care professionals. It 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.
Dr Louise Jones, Clinical Senior Lecturer, Marie Curie Palliative Care Research Dept at UCL, and senior author of the research, said: “This peer-reviewed article in the academic research journal, Dementia, is part of a wider three year programme of research looking at how care for people with advanced dementia at the end of life can be improved in all care settings, including care homes and hospitals, where it is widely recognised that care can be challenging.
“The sample for this qualitative research was drawn from a range of care home providers across greater London, representative of the diversity of these settings.
“It is usual in qualitative work to analyse in depth data arising from what may appear to be a small number of participants. We followed the usual practice of continuing with interviews until no new themes arise from the data. Our findings were supported by data from workshops held across the four countries of the UK. Interviews used an open ended discursive approach and attempted to go beyond what is widely known and explore underlying contexts and processes. Conversations were guided by data collected using a similar bottom up approach from other parts of our research programme. This methodology was independently peer reviewed as part of the usual quality control process for international journals.”
“This research adds to the growing body of knowledge that is published internationally which aims to increase understanding of care for people with advanced dementia and provide evidence to improve practice.”
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 and Reader at the Marie Curie Palliative Care Research Department at University College London, 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.