Objective: Our objective was to develop and test a measure of HRQL in dementia to be used across levels of illness severity and social support and which is responsive to change, enabling the evaluation of biological and psychosocial interventions in dementia.
Design: Our approach incorporated high quality psychometric principles, including: developing a conceptual framework; resolution of conceptual and practical issues; and large-scale field tests to ensure representativeness and statistical stability.
To generate the conceptual model we used top down (experts and literature) and bottom up (new qualitative data) approaches. This was then used to produce an interviewer administered, self-report questionnaire.
Materials and Methods: Preliminary field testing and item reduction was completed in 130 people with dementia and 130 carers to produce an item-reduced version with the best psychometric performance. Final field tests were completed on a further 100+ dyads to determine acceptability, feasibility, validity and reliability, generating a final instrument.
Results: The conceptual model consisted of five domains for HRQL in dementia: daily activities and looking after yourself; health and well being; cognitive functioning; social relationships; and self-concept. A 28-item person with dementia, and a 31-item carer (proxy) version of DEMQOL were generated with high preliminary ratings of validity and reliability. Psychometric data on the use of the instrument will be presented.
Conclusion: DEMQOL has the potential to provide a robust and simple method for the assessment of HRQL in dementia. This can be of value in descriptive work evaluating the health state of people with dementia and also in comprehensive evaluations of the impact of pharmaceutical and psychosocial interventions for people with dementia.
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