Alzheimer’s Society comment on Nuffield Council on Bioethics report

The authors call for better training for doctors, nurses and professional carers and emphasise the responsibility we all have to support people with dementia to live well.

The report highlights that it's not just the big decisions but also the ordinary things that cause distress, such as whether people with dementia should be given the freedom to carry on with potentially risky activities like cooking or driving. The report also looked at the acceptability of lying to people with dementia if it is seen to be for their benefit.

Neil Hunt, Chief Executive, Alzheimer's Society says,

'This report provides compelling evidence of the need for better public understanding of dementia, more support and greater investment in research.

Families, carers and professionals face a range of complex and distressing ethical issues when caring for a person with dementia. Decisions can be hugely emotional and there are no right or wrong answers. The Nuffield council recognises the need to combat stigma and emphasises how important it is to value the person with dementia and treat families as partners in care.

One in three people over 65 will die with dementia. We need to ensure that carers are supported in making difficult ethical decisions and people with dementia are involved in this process wherever possible.'

Sue Baker, who has a father with Alzheimer's disease has faced her own ethical dilemmas.

'As a carer it's pretty normal to have to make difficult choices on a regular basis but that doesn't make it any easier. When Dad was diagnosed with bowel cancer we chose not to tell him as having Alzheimer's disease was already more than enough for him to deal with and it would only have caused unnecessary pain. You have to look at your individual situation and act with the best interests of the person with dementia in mind.'

The report was released following a year's work involving consultations with experts, including Alzheimer's Society. Alzheimer's Society worked with its members to feed the experiences and views of people with dementia and their carers into this process.