Dementia – patients charter launched

The Herald - 8 Oct 2009. The Scottish Government needs to find another £15 million a year for the next five years to fund the better management of Alzheimer’s disease, according to a Dementia Manifesto launched by Alzheimer’s Scotland this week. One-quarter of all deaths in Scotland are now due to the condition, which affects 70,000 people and their families – set to almost double in 20 years – and costs the country £1.7 billion a year, according to the charity. Yet it gets only two pence in every pound of medical research funding. One major demand of the manifesto, based on consultations with patients and their families, is for more to be done to help people when they are diagnosed. “No-one should be left to face this on their own,” says the document, which aims to influence Scotland’s first National Strategy on Alzheimer’s due next spring.Also this week, the Scottish government launches a national consultation which will include a face-to-face event to get input from sufferers and carers.


Health Minister Shona Robison said: “I’m particularly keen to hear from people about the lessons they can share and what improvements they think can be made. It isn’t necessarily a matter of money but about being creative in how we care for people and the possibilities of what we can achieve. I’d encourage as many people as possible to get involved.”

With better tests, diagnosis now tends to occur earlier. “There are fewer people being misdiagnosed with depression or stress, and fewer people being wrongly prescribed anti–psychotic drugs,” said Elaine Harley of Alzheimer’s Scotland.

But because, unlike early diagnosis of cancer and heart disease, it does not lead to the better prospect of a cure, early diagnosis of AD is a mixed blessing.

“Some people and families do cover up the signs because they basically don’t want to know. And that is understandable. But for people who can come to terms with it and cope, early diagnosis is a positive thing,” Harley said.

On the plus side, it allows sufferers and their families time to arrange power of attorney and other legal matters, avoiding potentially costly and complex legal tangles. They can also make living wills and forward plan for care. But it also means people are living longer with the condition – many will survive for seven to 12 years after diagnosis and a significant number even longer.

Supporting people emotionally in the early days is vital and can reduce stress, argues the manifesto. It quotes research showing that people given short-term

support at diagnosis stage go on to spend almost 18 months less in long-term care.

Tayside Health Board is leading in this approach and now has 13 trained dementia nurses, after a pilot project led by nurse consultant Dot Weaks.

This involved training nurses in dementia counselling and putting them in to support families during the consultations when doctors broke the news to them. They were then made available to families and patients after diagnosis too.

Weaks’s report found that: “The potential for improvements in the quality of life for these people is immense.”

John McLeod, professor of counselling at the University of Abertay Dundee, said in the absence of effective drug treatments, these kind of initiatives were relatively low cost and made the best use of professional nurses already involved in caring for the patients.

“We live in a technological age. Everyone looks for technological solutions to problems. But we don’t have a cure for Alzheimer’s. This is low tech and it is comparatively low cost. It just involves making the best use of the professional nurses who are involved in the process anyway.”

He said more resources should be directed towards offering counselling to AD patients and other chronic and incurable conditions.

“We are finding that initiatives like this can really help people who have an early diagnosis of dementia to live their lives in the best possible way without getting depressed or losing their relationships.”

Nurse Jane McGowan, who works with the elderly mental health team in Blairgowrie, agreed. “I felt the training helped me to make a difference to people who have an early diagnosis. The consultants have encouraged us to come into the consultation with them. That means we are involved at the start, and we can see how the people are taking it. Then we have therapeutic tasks to complete with them.

“These are things like: allowing them to tell their story, deal with stigma and live life as normal. Before, I might not have understood that as the important work it is. It might have seemed a bit more like chatting.

“It does take a bit more of our time. We are constantly getting pulled towards the end of the journey of the disease. But trying to spend some time with people at the beginning has been very effective. They are less depressed and they come to terms with it more quickly.”

Providing appropriate care over that time can be a challenging and costly business. And with the numbers set to virtually double in 20 years, that bill will go on rising – from an estimated £1.7bn to the Scottish economy (including the cost of informal care) to £2.7 bn by 2031.

The biggest risk factor for getting Alzheimer’s is age. There are only 2300 people with the disease in Scotland who are under 65. As doctors get better at treating cancer and heart disease, more and more people will end up suffering from Alzheimer’s.

“We need much more research into the ageing brain, how we protect it and how we reverse some of the effects of Alzheimer’s,” said Elaine Harley.

She added there was mounting evidence that a healthy lifestyle, exercise and keeping the brain active could delay the onset of the condition for many.

Sergio Della Sala, professor in cognitive science at the University of Edinburgh, said there was not yet a gold standard for the treatment and management of Alzheimer’s and he hoped the national strategy would provide one.