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Dementia should be no barrier to a good quality of life

Published 15 April 2010

Only 13 per cent of people believe a person with dementia can have a good quality of life at all stages of their condition according to Alzheimer’s Society research released today (Thursday, 15 April)

However a new report by the charity found a better quality of life is possible for people with a dementia diagnosis. It highlights simple things such as having someone to talk to or being able to practice a faith that can have a huge impact.

My Name is Not Dementia, draws on the views of people with dementia including author Sir Terry Pratchett who has written a foreword for the report. It aims to break down misconceptions by showing a person's identity does not disappear because of a dementia diagnosis.

Research also shows more than half (54%) of people think a diagnosis of dementia would have a bigger impact on their quality of life in later life than cancer (19%) or a physical disability (16%). Over half of people (52%) believe dementia has a stigma attached to it.

Award winning author Sir Terry Pratchett who has posterior cortical atrophy, a rare form of dementia, said,

'Dementia is undoubtedly a cruel and debilitating condition. However a diagnosis does not strip a person of their identity. That person still has a voice and they deserve to be heard. Dementia requires not just care but also understanding. There is an opportunity here to give the lie to some of the clichés of care. We have to learn to be good at it.'

Ruth Sutherland, Acting Chief Executive of Alzheimer's Society, said,

'All too often dementia is seen as an insurmountable barrier and a diagnosis is seen as a death sentence. This doesn't have to be the case. By listening to people living with the condition, as this report does, we can better understand what is important to
them and how they would like to live their lives. We need to learn to see the person not just the dementia.'

Heather Roberts, 54, who was diagnosed with Alzheimer's disease, four years ago, said,

'Being diagnosed with Alzheimer's disease certainly changed my life but that doesn't mean I don't have a good quality of life. I still love going on holidays, playing tennis and spending time with my family. Also maintaining a good sense of humour makes all the difference. Yes I have dementia but there is much more to my life than that.'

The report, which was launched by writer Rosie Boycott, lists 10 criteria that people with dementia said were important for improving quality of life. Alzheimer's Society hopes to use these findings to develop a way to monitor quality of life for people with dementia which could be used to assess the success of policy and service provision.


Other highlights of the report, which was compiled by the Mental Health Foundation, include:

  • There are significant differences in criteria between people from different ethnic backgrounds living in the community and people with severe dementia living in care homes.
  • Carers often gave different answers to what they thought would be important for quality of life than the person with dementia.
  • People with more severe dementia were able to give their opinions using a picture card system.

Notes to editors

  • Case studies and interviews with spokespeople are available by contacting Alzheimer's Society press office on 0207 423 3595
  • A full copy of My Name is Not Dementia is available at alzheimers.org.uk/mynameisnotdementia
  • Alzheimer's Society commissioned the Mental Health Foundation to conduct the research for My Name is Not Dementia. The research involved a literature review, interviews, focus groups and a postal survey. It involved contributions from 44 people with dementia including a high proportion from black, Asian and ethnic communities and people with more severe dementia living in care homes.
  • Alzheimer's Society also commissioned additional research into attitudes to the quality of life for people with dementia through an omnibus survey of more than 2,000 people.
  • The report will be launched at an event at Over-Seas House, St James's Street by Rosie Boycott on Thursday 15 April.
  • One in three people over 65 will die with dementia.
  • Alzheimer's Society research shows that 750,000 people in the UK have a form of dementia, more than half have Alzheimer's disease. In 15 years 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 the millions of people who care for them. 
  • Alzheimer's Society works in England, Wales and Northern Ireland
  • Alzheimer's Society needs to raise money to help people live well with dementia today and for research to find a cure for tomorrow. You can donate now by calling 0845 306 0898 or visiting alzheimers.org.uk
  • Alzheimer's Society provides a National Dementia Helpline, the number is 0845 300 0336 or visit alzheimers.org.uk