My name is not dementia

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

Following on from the Dementia: out of the shadows  report, in which people with dementia spoke out about stigma and the impact that the diagnosis had on their lives, Alzheimer's commissioned research into quality of life in dementia. The My name is not dementia report presents the findings of the first stage of this project.

The research was carried out by the Mental Health Foundation over 2009/10 and aimed to better understand key quality of life indicators for people with a dementia diagnosis. It used evidence that drew directly on the views and experience of people with dementia as well as building upon existing quality of life indicators and measures.

A particular focus of the research was to collect the views of people with dementia from so-called 'seldom heard' groups, including people from black and minority ethnic groups and people with more severe dementia living in care homes.

Alzheimer's Society hopes to build consensus on what important quality of life indicators might be and how they might be measured on a population wide basis in order to understand whether quality of life for people with dementia is improving or not.

Recommendations

1. The research described in this report found consistent themes about what is important in the quality of life of people with dementia. We recommend that work be taken forward to explore the possibility of developing a monitor of quality of life for people with dementia. This could capture what quality of life is like for people with dementia across the UK. It could explore whether quality of life is improving or declining over time and provide information on what factors might explain any observed changes.

2. This report highlights a range of issues regarding the understanding and measurement of quality of life for people with dementia. We recommend that these be used to inform future work on quality of life in dementia and dementia services and policy in general.

These findings include:

• The possibility of developing methodologies such as Talking Mats to gather the views of people in the later stages of dementia
• The importance of developing methodologies that include both generic and health-specific quality of life indicators
• The discrepancy between the views of people with dementia and those caring for them, in terms of what is most important to quality of life
• The suggestion that different communities of people with dementia consider different things to be most important to their quality of life, for example those in care homes and those from black and minority ethnic communities.

3. We recommend that these bodies policy makers, regulators and service providers ensure they consider the breadth of factors that impact on quality of life when developing and implementing their work. This must include factors that may not have previously been considered as relevant to these organisations, for example relationships and spirituality.

4. The report shows that quality of life is possible following a diagnosis of dementia. Recognition of this should inform all of the dementia-related work of policy makers and service providers. The finding that there are many factors outside the person's dementia that affect their quality of life provides further incentive to ensure services are developed that address a wide range of aspects of people's  lives. It demonstrates the importance of avoiding assumptions that, following a diagnosis of dementia, support to improve other aspects of a person life is pointless because it will have no impact on quality of life.