A ‘double stigma’
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 the UK’s Alzheimer’s Society last month, there is a lack of public understanding of dementia and an unwillingness to discuss death in society.
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 the UK’s Alzheimer’s Society last month, 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.
The report, which interviewed people with dementia and carers about issues that dementia presents at the end of life, found 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.
Another major issue raised by the report was a lack of ability to communicate and the fact that some people may have lost the capacity to make decisions for some time, making end of life care especially challenging and complex.
Other recommendations from the report included:
- 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 whenever the decision is taken to withhold or withdraw treatment.
