Fear of diagnosis puts patients at risk

The three-year research findings indicate that:

• Half of all carers delay visiting their GP after first noticing something was wrong - the average length of delay was three years.
• Less than a third of GPs and nurses feel confident about giving a diagnosis or talking to someone about their diagnosis of dementia.
• Over a fifth of carers said no one had told them the diagnosis.

Professor Murna Downs, one of the key researchers, said:

'Three years is far too long for someone to wait - we need to let people know that there are many new services and drug treatments for people with dementia. For those who may benefit from the new drug treatments, the earlier these are the prescribed, the better. There is clearly still a lot of stigma and misunderstanding attached to dementia.'

Carer:

'I knew that something was wrong with my husband, but didn't want to face the truth. I knew that there wasn't a cure for it [dementia], but I didn't know about the drug treatments.'

When diagnosis is delayed or avoided, people are left struggling alone for much longer than necessary.

'I was so relieved to get a diagnosis, and to know I had a proper illness.'
Younger person with dementia

It's not only the fact that people have difficulties in talking about dementia, many GPs and other health care professionals have difficulty in diagnosing dementia.

'I feel I have some knowledge but need more.'
GP

The research also found that health professionals find it difficult to talk to people with dementia. Indeed, more than two thirds of GPs and nurses do not feel confident about giving a diagnosis or talking to someone about their diagnosis of dementia. And, over a fifth of carers said no-one had told them the diagnosis.

'Telling someone they have dementia is often difficult. But I feel much better now I know what's going on and what to expect.'
Person with dementia

Harry Cayton, chief executive of the Society said:

'People with dementia are clear in what they want. Among the things they value are an accurate diagnosis given sensitively, prompt referral to specialist services, access to new treatments and good information about dementia and about support services.'

The press office can provide carers and people with dementia for interview regarding their own diagnostic experience.

We are also happy to put you in touch with the researchers, Professor Murna Downs from the University of Bradford's Dementia Group, and Dr Steve Iliffe GP, from the Royal Free and University College London medical school.

Notes for editors

• The Alzheimer's Society is the UK's leading care and research charity for people with dementia and their carers.
• Over 700,000 people in the UK have dementia. More than half have Alzheimer's disease.
• The research covered 40 primary care practices and 120 doctors, 80 nurses, 220 people with dementia and 110 carers participated. Professor Murna Downs of the University of Bradford's Dementia Group, and colleagues from Stirling University and University College London investigated the impact of different educational interventions to identify which improved dementia care the most. Ten practices were each assigned one of three educational interventions with the remaining ten acting as a control group.
• Dementia affects one in 20 people over the age of 65 and one in five over the age of 80.
• For information and advice on Alzheimer's disease or other forms of dementia call the Alzheimer's Society national helpline on 0845 300 0336. Our website address is: http://www.alzheimers.org.uk/.