Self-reporting quality of life in mild-to-moderate Alzheimer's disease and Lewy body dementia: Comparing capability and health-focused measures using response process validation

Soc Sci Med. 2026 Feb 18;396:119102. doi: 10.1016/j.socscimed.2026.119102. Online ahead of print.

ABSTRACT

BACKGROUND: Capability measures offer theoretical advantages for assessing wellbeing in health economics and outcomes research, yet their feasibility for self-reporting by people living with dementia remains to be established. This exploratory study compares the feasibility of self-reporting on capability versus health-focused quality of life measures among people living with mild-tomoderate dementia, using response process validation.

METHODS: Twenty-three community-dwelling participants living with Alzheimer's disease (n = 11) or Lewy body dementia (n = 12) completed four measures using concurrent think-aloud cognitive interviewing: two capability measures (ICECAP-O, ICECAP-SCM) and two health-focused measures (QoL-AD, and AQoL-4D). Errors were coded using Tourangeau's four-stage response model (comprehension, retrieval, judgement, response). Completion times, support requirements, and error patterns were compared across measures and diagnostic groups.

RESULTS: Capability measures showed higher error rates (13.7-18.3%) than health-related measures (5.1-8.4%) despite shorter completion times. Comprehension errors (51.2% of all errors) were most common across all measures, particularly for abstract concepts like dignity and doing things that make you feel valued. Retrieval errors were rare (4.9%), suggesting memory is not the primary barrier. Diagnostic groups showed distinct error profiles. Participants living with Lewy body dementia showed higher rates of comprehension errors (57.4% vs 42.9%), whilst participants living with Alzheimer's disease showed more response-selection difficulties (25.7% vs 14.9%).

CONCLUSIONS: While self-reporting remains feasible in mild-to-moderate Alzheimer's disease and Lewy body dementia, capability measures pose greater cognitive demands than health-focused measures, primarily due to comprehension of abstract concepts and distinguishing capability from functioning rather than memory retrieval. Measures should be validated for specific dementia subtypes, and hybrid approaches anchoring capability judgements in concrete experiences warrant exploration. This exploratory study provides preliminary response process validity evidence to inform measure selection in dementia research and clinical practice, ensuring people living with dementia can meaningfully participate in health economics and policy decisions that affect their care.

PMID:41775023 | DOI:10.1016/j.socscimed.2026.119102