[This abstract first appeared in: Dementia: the Latest Evidence Newsletter RWHT Volume 1 Issue 2 September 2010].
The Alzheimer’s Society has reported findings from the first stage of a project which concentrates on quality of life in dementia.
The research was aimed at better understanding the key quality of life indicators for people with a dementia diagnosis. It used evidence drawn directly from the views and experiences of people with dementia (including “seldom heard” voices from minority groups), in addition to building upon existing quality of life indicators and measures.
This 64 page report highlights the range of issues that must be addressed in order to support the maintenance and promotion of quality of life. Considerations which may not previously have been considered relevant, for example relationships and spirituality, are given a new significance. Specific recommendations include:
- Developing methodologies to gather the views of people in the later stages of dementia.
- Developing methodologies that include both generic and health-specific quality of life indicators.
- Studying discrepancies between the views of people with dementia and those caring for them.
- Studying whether different communities of people with dementia consider different things to be more important to their quality of life.
The eventual aim is to develop consensus about what the important quality of life indicators are and how they might be measured across the population. These measures will be required in order to understand whether or not quality of life for people with dementia is improving.
My name is not dementia: People with dementia discuss quality of life indicators. London: Alzheimer’s Society, 2010.