Page last updated at 23:21 GMT, Monday, 6 October 2008 00:21 UK

Dementia patients 'suffer stigma'


Terry Pratchett talks about the stigma of dementia

The stigma surrounding dementia makes life much harder for many patients, research suggests.

A survey by the Alzheimer's Society found patients reported neighbours crossing the street to avoid them.

Many also found getting a diagnosis was a protracted and, at times, distressing experience, with doctors sometimes dismissing symptoms as just old age.

The charity carried out in-depth interviews with 62 people in the UK, of whom 32 had dementia.

It also carried out a survey of more than 4,000 members of the general public, which found that half thought stigma was a serious problem for people with dementia.

The report blamed "dismissive, unhelpful or uninformed responses from GPs and doctors working in specialist services" for compounding the problems faced by patients seeking a diagnosis.

It concluded that even when a diagnosis was confirmed people were often left with little or no support, information or advice.

Neil Hunt, chief executive of the Alzheimer's Society, said: "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."

Pratchett call

Dr Andrew McCulloch, chief executive of the Mental Health Foundation, said: "What this report lays bare should be a national scandal.

Terry Pratchett
It's a strange life when you 'come out' - people get embarrassed, lower their voices and get lost for words
Terry Pratchett

"Nobody in a civilised society should have the burden of stigma added to the distress 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."

Best-selling novelist Terry Pratchett was diagnosed with early onset Alzheimer's disease last December.

He said: "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."

Figures show that one in three people over the age of 65 will die with a form of dementia.

A total of 700,000 people in the UK have a form of dementia, half of whom have Alzheimer's disease.

Almost a million people are expected to be living with dementia in the next 20 years, rising to 1.7 million by 2051 due to an increasingly ageing population.

The Department of Health said the problems would be addressed in a National Dementia Strategy to be published in November.

"There is no doubt also that we need better diagnostic services, and more effective peer support networks."

Author Pratchett has Alzheimer's
13 Dec 07 |  Entertainment
Quicker dementia diagnosis call
29 May 08 |  Health
Dementia 'must be key priority'
24 Jan 08 |  Health
Alzheimer's disease
08 Jan 04 |  Medical notes

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