Call for debate on dementia care

A debate is needed over the ethical dilemmas facing people caring for dementia patients, experts say.

The Nuffield Council on Bioethics wants to help advise carers and is launching a public consultation to gauge opinion on the tricky decisions made.

It has posed a series of questions about the appropriateness of denying freedoms and the use of deception.

The council said it was acting as the number of people with dementia was set to rise with the ageing population.

About 700,000 people in the UK have the condition, but that figure is expected to double in the next 40 years.

Dementia is a degenerative condition which results in memory problems, mood changes and communication problems.

"It is not about making rules or saying what is wrong"
Dr Rhona Knight, of the Nuffield Council on Bioethics

'I just want to protect him'

Among the questions being posed during the 12-week consultation are:

• Is it ever right to restrain a person to reduce the risks of wandering?
• Is it ever right to deceive by disguising medication in food?
• Should people with dementia be involved in research if they are no longer able to choose for themselves whether or not to participate?

The council also said that while it was normally taken for granted that patients should be told the truth and not forced into things, there may be something unique to dementia which overrides that.

Force

Dr Rhona Knight, a GP and member of the Nuffield working group which is carrying out the consultation, gave the example of a person who is forced against their wishes to go to a day centre because carers know that when they get there they always enjoyed it.

"It is not about making rules or saying what is wrong. It is about giving advice.

"There are a lot of grey areas when delivering care.

"As a GP, I know that people with dementia and the people caring for them are facing real-life ethical dilemmas on a day-to-day basis and often they don't feel equipped to deal with them."

The final guidance is not due out until 2009 and the council expects it to apply to carers and NHS staff.

Neil Hunt, chief executive of the Alzheimer's Society, said it was the right time to have a debate.

"Families, carers and professionals are often faced with a baffling array of ethical dilemmas when caring for a person with dementia.

"The use of restraint, the covert administration of medication and when to tell the truth are all issues carers and professionals face on a daily basis.

"They can often struggle to balance the rights of people they are caring for with the practical consequences of the decisions they make."

RELATED INTERNET LINKS
Alzheimer's Society
Nuffield Council on Bioethics
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