Living with Dementia November 2008

Out of the shadows

A report revealing the impact of stigma on people with dementia was launched by the Society in October. Terry Pratchett

The first step in dealing with dementia is to talk about it, said author Terry Pratchett OBE when launching an Alzheimer's Society report about dementia and stigma on 7 October.

More precisely, the author, who was diagnosed with posterior cortical atrophy - a rare form of Alzheimer's - a year ago, said,

'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.'

The report, entitled Dementia: Out of the Shadows, gives valuable insight into the impact stigma has on the lives of people with dementia. The Society commissioned the Mental Health Foundation to conduct research for the report, which focused on four main areas: the range of dementias participants had and the length of time they had been living with the condition, their experiences of being diagnosed, life following diagnosis, and the issue of stigma.

The report, for which Terry Pratchett wrote the foreword, provides people with dementia an opportunity to explain, in their own words, what it is like to live with the condition.

Plagued by stigma
Out of the shadows reveals that half of all UK adults believe dementia is plagued by stigma, double that associated with cancer. People 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.

In a video Terry Pratchett says,

'Names have power, like the word Alzheimer's; it terrorises us. It has power over us. When we are prepared to discuss it aloud we might have power over it. There should be no shame in having it, yet people still feel ashamed and people don't talk about it.

'There's a stigma around old age in any case; it's the elephant in the bedroom and it's so big that people don't talk about it; it worries the hell out of them.'

Impact of dementia
The report revealed how negative reactions from friends and family can have a huge impact on a person's wellbeing and ability to cope with the condition. The effects of stigma range from not being believed to being actively avoided in the street.

Speaking about stigma, one person with dementia said,

'The worst part was telling the kids. One daughter just doesn't want to know, the other one is in denial and my son knows more than I do.'

On the subject of diagnosis, many people reported being relieved once they realised what was actually wrong with them. It is estimated that only a third of people with dementia ever receive a formal diagnosis, yet no one involved in the research regretted being told about their dementia.

A carer quoted in the report said,

'The best thing for us was when he got a diagnosis and we had a title. We could say, 'We know what it is', and it is better than just wondering what the heck's going on and not knowing.'

Writing in the foreword about his own experience of being diagnosed, Pratchett, who was awarded the OBE for services to British literature ten years ago, states,

'I felt totally alone with the world receding away from me in every direction and you could have used my anger to weld steel. I remember on that day of rage thinking that if I'd been diagnosed with cancer of any kind, at least there would have opened in front of me a trodden path.

'I was not in the mood for a response that said, more or less, 'go away and come back in six years'.

National campaign
The experiences of the people highlighted in this report underline the urgent need to reduce the stigma surrounding dementia, encourage early and swift diagnosis, and provide people with dementia and their families support and information after diagnosis.

The Society is now calling for investment in national awareness campaigns and improved services for people with dementia in order to bring dementia out of the shadows. We have identified five recommendations for addressing these challenges: