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New research by Marie Curie has found care homes are struggling to care for residents in the later stages of dementia

There are an estimated 400,000 people living in care homes in the UK and 80% of those have dementia or another form of cognitive impairment. However, research by Marie Curie has found that many care homes are struggling to care for those with dementia who are in the later stages of the disease.

The Marie Curie Palliative Care Research Department at University College London carried out in-depth interviews with a range of health and social care professionals. They discovered that people in care homes with advanced dementia tend to receive ‘fragmented and inadequate’ care at the end of life, with many of those interviewed complaining that care homes were ‘ill-equipped’ to provide the right care at this stage.

Care home staff complained of poor morale and frustration that they didn’t have enough training and support to respond to the complex needs of people with dementia at the end of their life. They believed 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.

Dr Liz Sampson, co-author of the research, says:

‘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.’

Typical challenges that can occur in the later stages of dementia can include double incontinence, communication difficulties, urinary tract infections, pain, anxiety, swallowing problems, plus other health problems such as diabetes and hypertension.

Dr Sabine Best, head of research at Marie Curie, says:

‘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.’

For more information on the later stages of dementia, preparing for end of life care and death and dementia, click the hyperlinks in this sentence.