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 in 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.

Research shows that 54 per cent of people think a diagnosis of dementia would have a bigger impact on their quality of life in later years than cancer (19 per cent) or a physical disability (16 per cent); and 52 per cent believe dementia has a stigma attached to it.

My Name is Not Dementia, draws on the views of people with dementia, including award-winning 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.

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 the 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.

The report, compiled by the Mental Health Foundation, also highlights:

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