Expert dementia support ‘crucial’

Expert dementia support ‘crucial’

Expert social support which could take much pain out of dealing with dementia should be more accessible to patients and their carers, a report says.

The Nuffield Council on Bioethics said such help often was unavailable until a crisis point was reached.

But access to holistic expert services in the earliest stages of the disease could make a real difference, it said.

Patients should not be written off, but involved in decisions about their care as much as possible, the report said.

REPORT RECOMMENDATIONS

• Services should be made available from an early stage
• Families should be treated as ‘partners in care’ by professionals, helping to build trust
• Introduction of ‘risk-benefit assessments’ to determine how best to protect patients without unnecessarily damaging their quality of life
• Highlight legal duties of service providers – such as shops and restaurants – to ensure people with dementia can use their services
• Abolition of the fee for people to register as welfare attorneys, who can make decisions on someone else’s behalf about medical treatment
• More guidance on how dementia patients can be actively involved in their care
• More funding for dementia research

Easing the pain of dementia

The report authors said the flaws in providing dementia care were similar to those in providing cancer care 20 years ago when the patient was seen simply as a disease to be treated.

But since then cancer specialists had adopted a much more holistic approach, accepting that the patient’s emotional and spiritual needs were also important.

Professor Tony Hope, a psychiatrist who led the working party which produced the new report, said people caring for somebody with Alzheimer’s faced tricky ethical dilemmas on a daily basis.

He said often it was the little things that most distressed families.

"A common problem is being worried that a person will hurt themselves, for example by slipping in the bathroom.

"But going into the bathroom with them and intruding on their privacy can be, understandably, very upsetting."

"There will rarely be a straightforward answer to these problems, but we want carers to have better access to support and advice to help them work out what is best in their particular situation.

"Things are starting to change but dementia still carries a stigma.

"Dementia needs to become an accepted, visible part of our society, and people with dementia should be able to take part in the activities they enjoy."

The report also praised the establishment of Alzheimer Cafe schemes, where people with dementia, their carers and health professionals can meet to talk through problems.

More respect

Dr Rhona Knight, a GP and another author of the report, said: "People with dementia also need more respect.

"We heard one person describe having dementia as being ‘like a non-person’. We have to challenge these kinds of attitudes.

"People with dementia are often capable of doing much more than we think, and even if they can’t make big decisions, they may be able to make smaller ones, such as what to wear or eat."

The report said health professionals needed more information and training to help them deal with dementia, and the difficult situations it could create.

Rather than starving carers of information for fear of breaching confidentiality, they should be encouraged to share details which could be of great practical help.

Neil Hunt, chief executive of the Alzheimer’s Society, said: "This report provides compelling evidence of the need for better public understanding of dementia, more support and greater investment in research."

A Department of Health spokesperson said careful account would be taken of the report’s findings when implementing its new dementia care 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."

About 700,000 people in the UK currently have dementia and this is likely to increase to 1.7 million by 2051.</p

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