My Name is Not Dementia

This literature review forms the first part of a research project which sets out to establish

key quality of life indicators for people with a diagnosis of dementia using evidence that

draws directly on their own views and experiences. A central aim in developing these

indicators is to provide commissioners, service providers, unpaid carers and people with

dementia themselves the means to evaluate quality of life and well-being in relation to

the services they are providing or receiving.

The project took place shortly after the publication by the government of the first

‘National Dementia Strategy for England’ (Department of Health 2009). This sets out

three key steps in terms of improving quality of life for people with dementia and their

carers: public education; proper and timely diagnosis of dementia; and development of

appropriate services for people who have dementia and their carers. It is likely that the

indicators developed through the research of which this review forms a part will include

measures that reflect these three key elements of the dementia strategy and may help

in monitoring its effectiveness.

Dementia is an umbrella term used to describe a group of brain disorders that involve a

progressive deterioration in cognitive function resulting eventually in severe cognitive

impairment. The individual with dementia experiences a gradual decline in their ability

to understand, remember, reason, communicate and use learned skills; mood changes

are also common as the part of the brain that controls emotion is affected by the

disease (Alzheimer’s Society 2007).