Through Their Eyes: Defining Good Life in Dementia for Health Economics Outcome Measures

OBJECTIVES: Despite progress in recognising the value of involving people living with dementia in research, disparities remain, particularly in the field of health economics outcome research, where the reliance on proxy reports, i.e., carer partners or healthcare professional, leads to a critical inequity in inclusion. This study aims to understand the concept of a 'good life' from the perspectives of people living with dementia and challenge the conventional reliance on proxy reporting in health economics outcome research.

METHODS: Using purposive sampling, 24 people living with dementia, including 12 people living mild dementia, 11 with moderate and 1 advanced, were recruited in Ireland. Data were gathered through in-depth interviews (September 2022-February 2023), with a focus on capturing diverse perspectives of people living with dementia about their perceptions of a ‘good life’. The data were analysed using Colaizzi's seven-step phenomenological method.

RESULTS: Results showed that people living with dementia perceived their quality of life through lenses of independence, social connections, engagement with life, adaptation to changing abilities. For participants with moderate dementia, perceptions of a ‘good life’ shifted from striving for independence and active life engagement to accepting assistance, adapting to limitations, and increasingly depending on social support. This transition reflects a journey of adaptation, where people living with dementia redefine their sense of a ‘good life’ with evolving challenges and capabilities. None of the economic outcome measures fully capture this dynamic and evolving nature of a ‘good life’ as described by people living with dementia.

CONCLUSIONS: These results highlight an important disparity between the lived experiences and the frameworks currently used in health economics outcome research. They emphasise the need for new, flexible research approaches that can adapt to the progressive nature of dementia. Such methods should prioritise direct involvement with people living with dementia, aiming for more ethical and fair practices in health economics.