Terry Pratchett backs campaign to beat stigma of Alzheimers

By Press Association

In the news

07 October 2008 00:30

Terry Pratchett is urging people to talk openly about dementia to help beat stigma associated with the disease.

The author, who was diagnosed with early onset Alzheimer's Disease last December, backed a new report to bring dementia "out of the shadows".

The study from the Alzheimer's Society found that half of UK adults believe dementia is a condition plagued by stigma.

Those with the disease reported losing friends, having neighbours cross the street and professionals dismissing symptoms as just old age.

The report involved a survey of more than 4,000 people together with focus groups and in-depth interviews with dementia sufferers and their families.

The study found that, for most people, the process of getting diagnosed was "a long, protracted and at times distressing experience".

It added: "This was for a number of reasons but particularly because of dismissive, unhelpful or uninformed responses from GPs and doctors working in specialist services.

"Even when dementia was diagnosed people were often left with little or no support, information or advice about what to do or where else they could seek assistance."

Pratchett 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.

"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."

Neil Hunt, chief executive of the Alzheimer's Society, said: "Alzheimer's Society will lead the fight against stigma and we want to see it reduced by half in five 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.

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.

Source: Press Association