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'Dementia patients 'not getting dying wish'

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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.”

  • 5 Comments

Readers' comments (5)

  • "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,” This is only true if the support is put in place for care at home. Recent experience has shown that 24 hour care is not the norm and not available. This means the family often have to pick up the bulk of care, often unsupported and without funding which is not the way forward

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  • Granted, this is a trajedy which needs to be addressed.

    All too frequently, hospitalisation occurs because care providers have not discussed end-of-life issues with families and individuals prior to a health crisis. Unfortunately, there is still ignorance about dementia and the fact that ultimately it is a terminal disease which will result in the sufferers death unless this is superceeded by other medical conditions. Faced with a sick individual, too many healthcare workers opt to transfer care into hospital for fear of being criticised for not providing appropriate care. What is required is a strategic approach which draws together the concerns and requirements of all those involved in this vulnerable client group.

    Although this report provides a welcome spotlight on the plight of those with dementia, it is not a true reflection of the work currently being undertaken in a number of areas in the UK.

    For example, last year a joint initiative was launched in Cornwall between healthcare commissioners and providers to improve services offered to those with advanced dementia and tackle this issue. Specifically, the End-of-Life project aimed to work with care homes, GP's and families to ensure that unnecessary admission to hospital was avoided by the implementation of agreed care pathways.

    The pilot project was launched in the S.E. of the county and won a national award for its impact on quality care. This programme is now being rolled-out across the county. Those interested in learning more about this work should contact the Dementia Liaison Service, Cornwall Foundation Trust

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  • Its isn't always easy to die where you wish to, even if you are just dying and not demented.

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  • For goodness sake. Let's not skirt around this most important issue confronting us.

    God forbid I suffer from any disablement at all, let alone dementia, and having worked for many years with the 'terminally ill and dying patients on my ward, I believe it is of utmost importance tom to be able to make up my own mind whether I could have an 'assisted' death, rather than suffer at the will of the 'socially morally conscientious in this country, who would feel 'better' if I died a slowly and suffering malingering death.
    As the issue would depend on my being 'capable of making an 'informed choice, it goes without saying I'd have to make that request, before my brain cells had been destroyed as a consequence of the progressive processes of the dementia.
    So, I would like to hope that I could seek the appropriate advice from my GP, and family, and be permitted a dignified and respectable death, than to lose my personality, quality of life just to please a bunch of ignorant 'do gooders', if you don't mind!

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  • it can be very difficult for carers/families to look after someone at home who has advanced dementia, this must be taken into account.

    we need to invest more money and time into palliative care for everyone who wishes to die at home and to open up more end of life beds.

    hospital is not a good place for anyone who is near the end of their life but there are too few alternatives at present and this must be addressed and acted upon.

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