Dementia patients 'kept in the dark'

Dementia sufferers want to be told of their illness

Dementia sufferers have a right to know the truth about their illness, says a health charity.

The Mental Health Foundation (MHF) says that too often people suffering from dementia are not told what is wrong with them.

But it says it is essential that people are given the chance to consider and make provision for their futures.

Ruth Lesirge, chief executive of the MHF, said it was time health professionals adopted a more open approach to dealing with dementia.

People must be given the opportunity to consider what lies ahead and make provision for a time when they may not be able to make their wishes known

Ruth Lesirge,
Mental Health Foundation

Consider the future

"What comes across very strongly is that people feel they have a right to know what is wrong with them.

"The idea that GPs and family members know that someone has dementia, but do not share that information with the patient, is in most cases inappropriate.

"We believe it is essential that health professionals adopt a more open approach to this complex illness.

"People must be given the opportunity to consider what lies ahead and make provision for a time when they may not be able to make their wishes known."

A report, Tell Me the Truth, carried out for the MHF by the University of Stirling, indicated that people wanted and needed to know the truth.

Out of 24 people surveyed, all said they were generally positive about their diagnosis.

One person told the researchers that it was important to have the chance to put their lives in order.

"Everybody can take on an awful lot more than you think. Sure you're sunk for a bit, and that's only to be expected, but you realise it's the best thing that could have happened.

"They tell you, you put your life in order, and that's it, but its not the doctor's choice, or the carer's choice, it's your choice and you should be given that choice."

Early signs

They added that although the news had been difficult to accept at first it had given them time to plan their future.

But a study last year by the Audit Commission suggested that only half of GPs believed it was important to look for the signs of dementia, because it is incurable.

The MHF is calling on doctors to act in the early stages of dementia, and to recognise that people have a right to know what is wrong with them and to be given clear and compassionate information about their condition.

The Alzheimer's Society has welcomed the survey and said it backs its research about the wishes of dementia sufferers.

"People with dementia have told the Alzheimer's Society, that together with shock, relief is a common feeling after a diagnosis.

"They react: 'I had an illness. I wasn't having a breakdown. Best foot forward, I can cope with this. I want to know. I want to be fully armed so I can get the most out of my life.'"

The report is available on the website and a copy is available for £10 from the MHF on 020 7535 7441.

The MHF also has two information booklets - All About Dementia and Because You Care (for anyone caring for someone with dementia) available on the same phone number or the website.