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.

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Notes to editors:

Alzheimer's Society spokespeople and case studies available on request.

Copies of Dementia: ethical issues are available from http://www.nuffieldbioethics.org/ from Thursday 1 October 2009.

Summary of key points from the report:

• Dementia is a medical condition but dementia services are often classed as social and not made available until a crisis point occurs. People with cancer would not be expected to wait for a crisis point and neither should people with dementia.
• People should have access to good quality assessment and support from the moment they or their families become concerned about symptoms
• Families should be treated as 'partners in care' by professionals.
• Risk assessments should be replaced by 'risk-benefit assessments' that take into account the quality of life of the person with dementia.
• The Equality & Human Rights Commission should highlight the legal duties of shops and restaurants to ensure people with dementia can use their services.
• Greater guidance is needed on how to apply mental capacity legislation and the process of appointing a welfare attorney should be easy and free.
• There should be more funding for dementia research, including research into how people with dementia can be supported to live well.

About Alzheimer's Society:

• One in three people over 65 will die with dementia.
• Alzheimer's Society research shows that 700,000 people in the UK have a form of dementia, more than half have Alzheimer's disease. In less than 20 years nearly a million people will be living with dementia. This will soar to 1.7 million people by 2051.
• Alzheimer's Society champions the rights of people living with dementia and the millions of people who care for them. 
• Alzheimer's Society works in England, Wales and Northern Ireland
• Alzheimer's Society needs to raise money to help people live well with dementia today and for research to find a cure for tomorrow. You can donate now by calling 0845 306 0898 or visiting http://www.alzheimers.org.uk
• Alzheimer's Society provides a National Dementia Helpline, the number is 0845 300 0336 or visit http://www.alzheimers.org.uk