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Double stigma around dementia and death leaving families in the dark

Published 25 October 2012

Holding hands

Many people with dementia are not dying in the place they want to, with their families unaware of their end of life wishes because of a double stigma around dementia and death.

According to new research published by Alzheimer's Society today (Thursday 25 October 2012) My Life Until The End: Dying Well With Dementia, found that there is a lack of public understanding of dementia and an unwillingness to discuss death in society.

Alzheimer's Society is calling for greater awareness of the importance of talking about death and dying. This includes planning end of life care in advance to help make the final days of more people with dementia as good as possible and in the place they want to be.

Despite evidence highlighted in the report that two thirds of the public want to die in their own homes (1), in 2010 only six per cent of people with dementia did (2). This is compared to 21 per cent of the general population. The report, which interviewed people with dementia and carers about issues that dementia presents at the end of life, found that in many cases people with dementia had not discussed their wishes around death and dying so no-one was able to put services in place to make their wishes a reality.

Other suggested reasons people with dementia are not dying in their own homes are their needs are really high so it is difficult for carers to cope and care in someone's own home is difficult to coordinate.

Another major issue raised by the report is that people with dementia are often not being treated with dignity at the end of their lives. Numerous carers said their loved ones went unchanged, left sitting in their own faeces and urine. In other cases people reported concerns of their loved ones dying in pain. One man had a dislocated shoulder for 11 days until his death despite his family raising concerns with numerous doctors. 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.

Francine Collison from London took part in the research. Her husband had dementia and passed away when he was 74. She said:

'My husband, Alan and I had already had conversations about the end of our lives before he was diagnosed with dementia. So when the end of his life was near I was able to make the decisions I knew he would want me to make with complete confidence and he was able to pass away the way he wished to. 

'I believe it is imperative that where a conversation about end of life wishes hasn't happened before someone is diagnosed with dementia, families find out what their loved one would like while they're still able to express their views.'

Jeremy Hughes, Chief Executive of Alzheimer's Society, said:

'It's hugely worrying that so many people with dementia are not ending their lives the way they wish or deserve to. Dementia is the third leading underlying cause of death in women and seventh in men; we cannot keep hiding from it. It requires careful planning.

'Staff working with people with dementia who might be nearing the end of their lives need to receive specific training so they can provide the best care possible, even when communication has diminished. People with the condition deserve to die with dignity, without pain, and in the place of their choosing as much as anyone else.'

 Other recommendations from the report are:

  • 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

Further Information

  • Evidence for the report, My life until the end: dying well with dementia, was gathered from semi-structured interviews carried out with 38 participants in August 2011. These consisted of 25 interviews with former carers, 10 interviews with current carers and three interviews with people with dementia
  • (1)Gomes et al, 2011
  • (2) Office of National Statistics 2010.