Dr Yu-Tzu Wu, a research associate at King’s College London, and Dr Catherine Quinn, a lecturer at the Centre of Applied Dementia Studies, and colleagues from the IDEAL programme have been looking at differences in ratings of quality of life, well-being, and satisfaction with life in people with dementia. This work has been recently published online in Age and Ageing https://doi.org/10.1093/ageing/afz177
When researchers or clinicians want to assess the quality of life of people with dementia it is quite common for them to seek the opinion of a family member or friend of the person, who provides an ‘informant-rating’. This has led to questions about the accuracy of these ratings, can informants fully understand the quality of life of someone else?
Informant-ratings have often been used to provide an insight into the quality of life and experiences of people with dementia. There are times where these ratings can be helpful. For example, where people with dementia have difficulty with verbal communication. However, there have been questions about whether these ratings affect our research findings, particularly for those with mild-to-moderate dementia.
We were interested in exploring whether there were differences in how people with dementia and informants rated the quality of life, well-being, and satisfaction with life of the person with dementia. We also wanted to see whether different factors are related to these outcomes. For this study we used information provided by people who had taken part in the IDEAL programme. These were 1547 people with dementia and 1283 carers who acted as informants. The carers were family members, friends or other supporters. Carers and people with dementia completed questionnaires on the quality of life, well-being and satisfaction with life of the person with dementia. They also completed questionnaires on a wide range of social, psychological, and health factors.
We found that people with dementia reported higher scores than their carers’ ratings. This means that people with dementia gave their quality of life, well-being and satisfaction with life higher scores than their carers did. However, both ratings had similar associations with social, psychological and health factors.
The findings suggest people with dementia are more likely to report higher scores for their quality of life, well-being and satisfaction with life than their carers. This needs to be taken into account when using informant-ratings in research. However, researchers can use self or informant ratings when looking at factors that predict quality of life, well-being and life satisfaction.
To access the full article see: Wu, Y.-T., Nelis, S. M., Quinn, C., Martyr, A., Jones, I. R., Victor, C. R., . . . the IDEAL programme team (2020). Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme. Age and Ageing. https://doi.org/10.1093/ageing/afz177
Written by Dr Catherine Quinn and Dr Yu-Tzu Wu