A double stigma over dementia and death means many people with dementia are not dying in the place they choose to do so, according to a new report.
The research, publish by the Alzheimer’s Society, claimed there is a lack of understanding of dementia in general in the UK.
The report, My Life Until The End: Dying Well With Dementia, also found society in general has an unwillingness to discuss death.
Alzheimer’s Society urged people across the country to talk more about death and dying and to be more aware of the issue. The group said discussions should include end-of-life care in advance, and how to make the final days more comfortable for people with dementia.
According to figures in the report, two-thirds of the public would prefer to die in their own home. But in 2010, just 6% of people with dementia wanting this, compared with a fifth (21%) of the population overall.
As part of the research, the campaign group interviewed people with dementia, as well as their carers. And the group found that in many cases, dementia patients rarely discussed their dying wishes, meaning they could not be put in place to become a reality.
Chief executive of Alzheimer’s Society, Jeremy Hughes, said: “It’s hugely worrying that so many people with dementia are not ending their lives the way they wish or deserve to.
“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.”
Dr Jane Collins, chief executive of Marie Curie Cancer Care, said: “We support this important report by the Alzheimer’s Society, which highlights a lack of choice and access to good end of life care for people with dementia.
“We know that the end of life care needs of people with dementia and their carers are poorly understood at present, but the number of people dying with dementia will increase considerably in the coming years.
“The fact that only 6% of people with dementia currently die at home is worrying because research shows that people with dementia could be treated more appropriately and cost effectively at home or in a familiar place of care, rather than unfamiliar hospital surroundings,” she added.
Simon Chapman, director of policy and parliamentary affairs at the National Council for Palliative Care, said: “Death and dementia represent two powerful human fears: losing our lives and losing our minds. But it is precisely because of the force of the fears that surround ‘the two Ds’ that people need to be able to discuss death and dementia more openly and confidently.
“Fears about death and dementia create barriers to people talking about the condition and its impact on people’s life and death.”