News Release, 21 September 2001
On World Alzheimers Day (21st September) the Mental Health Foundation is urging people to tell their GPs if they want to know the truth about a dementia diagnosis.
Most people who develop dementia are not usually told what is wrong with them, but a report carried out for the Mental Health Foundation by the University of Stirling, found that people with dementia find it much more helpful to be told their diagnosis, especially if this happens at an early stage of their illness.
The report, launched today, has strong implications for close family members of people with dementia, who are most likely to be told what is wrong with their relative. The Foundation is encouraging people to be honest with the person who has dementia, and to consider the benefits of sharing the diagnosis.
The report, Tell Me the Truth, is the first research to ask people with dementia themselves about the impact of being told their diagnosis. Of the 24 people surveyed , every one was generally positive about having been given their diagnosis. Although the news was often difficult to accept at first, the opportunities presented by this knowledge outweighed the limitations; people were able to make sense of the changes they had noticed in themselves, take steps to adapt their lives and make plans for the future.
"It may seem harsh to tell someone that they have dementia, but people are saying that they want to know the truth. 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.
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," commented Ruth Lesirge, chief executive, Mental Health Foundation.
There is no clear policy on disclosure amongst health professionals, and in studies GPs have shown a general reluctance to tell patients of a diagnosis of dementia, although other family members are much more likely to be told. Only 50% of GPs believe that it is important to look for early signs of dementia, largely because of their view that there is no point in looking for a disease that is incurable. The Mental Health Foundation believes this view is shortsighted, given the treatments now available to alleviate symptoms in the early stages of dementia.
Justifications for non-disclosure of diagnosis typically include the possibility of causing undue distress to the patient and the difficulty of explaining the illness. However, the Foundation's research suggests that people are more able to deal with this information than has commonly been supposed.
As one person said:
"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 it's not the doctor's choice, or the carer's choice, it's your choice and you should be given that choice."
The Mental Health Foundation recommends:
- GPs act on early signs of dementia and take steps to make a diagnosis, so that people can be made aware of their illness at an early stage.
- Practitioners recognise that people have a right to know their diagnosis if they choose, and that not sharing a diagnosis may cause distress.
- People should be given their diagnosis in a sensitive manner, with ongoing support and follow-up information available.
- Services should work collaboratively, using consistent terminology, so that each person is given clear information.
- Efforts should be made to break down the stigma and lack of understanding about dementia.
Earlier this year the Mental Health Foundation awarded funds to six pilot sites for a new dementia service development project, the Dementia Advice and Support Service. The project helps people in the early stages of dementia living in their own homes through an information, advice and support service enabling individuals to make decisions about their own finances, future care and other issues at an early stage.
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For further information and interview requests contact please contact the press office on 020 7803 1105 / 1128 or email the press office
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