My name is not dementia: people with dementia discuss quality of life

Author:
ALZHEIMER'S SOCIETY
Publisher:
Alzheimer's Society
Publication year:
2010
Pagination:
52p.
Place of publication:
London

The Mental Health Foundation carried out this project with the Alzheimer’s Society in order to better understand the key quality of life indicators for people with a diagnosis of dementia. The aim was to draw directly on their own views and experiences as well as to build upon existing quality of life indictors and measures. A particular aim was to focus on four “seldom heard” groups including; black and minority ethnic people; those with severe dementia living in nursing homes; people with learning disabilities suffering from dementia; and lesbian, gay, bisexual and transgender people with dementia. The research included a literature review, interview focus groups, and a postal survey. It was successful in reaching 44 people with dementia including significant numbers in the first two of these two hard to reach groups. Some difficulties were encountered in recruiting participants particularly from the latter two groups, raising some questions about the validity and reliability of the indictors and measures. A picture card approach was used with those suffering from severe dementia. Consistent themes did however emerge about what was important in participants’ quality of life. In order of importance these were: relationships or someone to talk to, environment, physical health, sense of humour, independence, ability to communicate, sense of personal identity, ability to or opportunity to engage in activities, ability to practise faith or religion, and experience of stigma.

Subject terms:
instruments, nursing homes, person-centred care, quality of life, user views, Alzheimers disease, black and minority ethnic people, dementia;
Content type:
research
Location(s):
United Kingdom
Link:
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