Despite evidence that two thirds of people want to die in their own homes, in 2010 only 6% of people with dementia did. This new research found that a lack of public understanding of dementia and an unwillingness to discuss death makes it difficult to ensure that people with dementia can have their end of life care wishes met.
People with dementia are also not dying in their own homes because carers find it difficult to cope with their needs, and co-ordinating care in someone’s own home is not straightforward.
The report also highlights the problem that people with dementia are often not being treated with dignity at the end of their lives. A lack of ability to communicate and the fact that some people may have lost the capacity to make decisions for some time makes end of life care especially challenging and complex.
‘My life until the end: dying well with dementia’ is based on interviews with 38 people who have dementia or who are carers or former carers.
Recommendations
Alzheimer’s Society is calling for greater awareness of the importance of talking about death and dying. They are encouraging people who have been diagnosed with dementia to talk to their families and plan for end of life care well in advance, so that their final days can be as good as possible and in the place they want to be.
There is also a need for greater staff training to enable people with dementia to have the best end of life possible.
Other recommendations from the report include:
- There should be greater support for people with dementia to plan for their future care using legal provisions and in a more informal way.
- People with dementia at the end of their lives should be able to access high quality services to meet their needs at any time of the day or night regardless of the setting.
- Greater attention should be paid to the emotional and spiritual needs of people with dementia in order to provide truly holistic care.
- There should be significant, co-ordinated and holistic support for the person with dementia and their carers wherever the decision is taken to withhold or withdraw treatment
Difficult conversations
‘Difficult conversations’, a publication by The National Council for Palliative Care and Dying Matters, is designed to help professionals and carers talk to people with dementia about their end of life wishes. The guidance includes practical advice on a range of issues and a list of useful resources on issues such as advanced care planning and peer support for carers.
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