'Morally wrong' to deny dementia patients support - report

It is "morally wrong" to diagnose people with dementia and then leave them with no support, a report said today.

There is "ample evidence" that, in many cases, people are diagnosed and then "simply told to come back in a year's time", it said.

The study, from the Nuffield Council on Bioethics, argued that access to good information, emotional support and practical help "is essential for people to live well with dementia".

However, the authors of the study stopped short of criticising a decision by a health watchdog to deny drugs to people in the early stages of Alzheimer's disease.

The National Institute for Health and Clinical Excellence (Nice) caused controversy in 2005 by denying patients access to four drugs, expressing concerns about cost and effectiveness.

Many families have said the drugs have improved the lives of relatives with dementia. Their plight has been backed by dementia charities, Age Concern and the Royal College of Nursing.

Nice issued updated guidance in June saying only people with moderately severe Alzheimer's can get donepezil, galantamine and rivastigmine, while another drug, memantine, cannot be given to those with moderately severe to severe Alzheimer's.

The drugs reportedly cost £2.50 a day.

Today, Professor Tony Hope, one of the authors of the report, said the council was not saying the Nice decision should be reconsidered.

But he said decisions about how NHS money should be spent on dementia drugs should take into account the welfare of the person and their family, not just improvements in mental ability.

"We don't know the internal workings of Nice, we are saying that would be an important aspect of that."

Some 700,000 people in the UK have dementia, with more than half of those having Alzheimer's disease.

Today's report also said that the £120 fee charged for nominating a power of attorney over welfare matters should be scrapped.

People with dementia can nominate somebody to look after their financial affairs or matters relating to their care or treatment if they lose mental ability.

The Office of the Public Guardian charges £120 to nominate a power of attorney over property and financial affairs and £120 for one for health and welfare.

The report said welfare powers of attorney were "a social good" and should, in principle, be available free of charge for everyone.

It said current arrangements should be reviewed to see if people were being put off either "because of the cost or because of the complexity of the process".

Neil Hunt, chief executive of the Alzheimer's Society, said of the report: "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."

A spokeswoman for the Department of Health said: "People with dementia and their carers face difficult decisions about their care and we welcome this report, which explores some very important issues.

"We will take careful account of its findings in implementing the National Dementia Strategy and the Carers Strategy.

"We are committed to improving early diagnosis and directing people to the right support, information and advice as soon as possible.

"We also want to see the stigma attached to dementia tackled at every level, from GPs to friends and family.

"Our first dementia advisers are now being recruited across the country.

"They will be a permanent point of contact throughout a person's care and someone they can trust to help them navigate the care and support system, directing them to the information they need."