Charity calls for national campaign to tackle dementia stigma

Published 7 October 2008

Half of all UK adults believe dementia is a condition plagued by stigma, double that associated with cancer, according to new Alzheimer's Society research launched by author Terry Pratchett.

Alzheimer's Society is urgently calling for national awareness campaigns to halve this stigma in 5 years. People with dementia involved in the research reported losing friends after a diagnosis of dementia, neighbours crossing the street as they approached and professionals dismissing symptoms as just old age.

No one involved in the research regretted being told about his or her dementia, but the quality of diagnosis varied immensely. Only a third of people with dementia ever receive a diagnosis.

Neil Hunt, Chief Executive of the Alzheimer's Society, says,

'Alzheimer's Society will lead the fight against stigma and we want to see it reduced by half in 5 years. Today's report exposes the desperate need to increase awareness among the public and professionals. There must be investment in national awareness campaigns. Government, charities, services and employers need to work together to make this a reality.
Dementia is caused by physical diseases of the brain and one in three people over 65 will die with the condition. It's absolutely disgraceful that people with dementia are still plagued by a stigma that affects their friends, families and the professionals they rely on for help.'

Terry Pratchett OBE, author and person with dementia will launch the report today on behalf of people with dementia. He says,

'It's a strange life when you 'come out' people get embarrassed, lower their voices and get lost for words. When Milton's Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt on the day I was diagnosed.
'What is needed is will and determination. The first step is to talk openly about dementia because it's a fact, well enshrined in folklore that if we are to kill the demon then first we have to say its name.
'Seven hundred thousand people who have dementia in this country are not heard. I'm fortunate; I can be heard. This report allows others to bring dementia out of the shadows.'

Dr Andrew McCulloch, Chief Executive of the Mental Health Foundation, says,

'What this report lays bare should be a national scandal. Nobody in a civilised society should have the burden of stigma added to the stress of coping with dementia, and everyone with the condition - not just the minority - should expect a quick diagnosis and a high level of support from health professionals.'

Dementia: Out of the Shadows identifies 5 vital steps to reduce dementia stigma:

Improve public understanding of dementia
Improve GPs' understanding of dementia and their ability to recognise the symptoms
Develop better specialist diagnostic assessment services for dementia
Provide timely and accessible information
Develop stronger peer support networks to help people cope.

Notes to editors:

Alzheimer's Society commissioned the Mental Health Foundation to conduct the research for Dementia: Out of the Shadows. It involved a literature review, seven focus groups and eight one-to-one interviews. A total of 61 people participated in the research, 32 of whom had dementia.
Alzheimer's Society also conducted additional research into stigma through an omnibus poll surveying over 4000 UK adults. The results showed that 50% of people think dementia is a condition plagued by stigma.
The report will be launched at by Terry Pratchett at an event on Tuesday 7 October at The Caledonian Club.
1 in 3 people over the age of 65 will die with a form of dementia
700,000 people in the UK have a form of dementia, more than half have Alzheimer's disease. In less than 20 years nearly a million people will be living with dementia. This will soar to 1.7 million people by 2051.
Alzheimer's Society champions the rights of people living with dementia and those who care for them. Alzheimer's Society works in England, Wales and Northern Ireland
As a charity, Alzheimer's Society depends on the generosity of the public to help it care, research and campaign for people with dementia. You can donate now by calling 0845 306 0898 or visiting www.alzheimers.org.uk
Alzheimer's Society provides a National Dementia Helpline, the number is 0845 300 0336 or visit www.alzheimers.org.uk