Quality-of-life assessment in dementia: the use of DEMQOL and DEMQOL-Proxy total scores.

Purpose: There is a need to determine whether health-related quality-of-life (HRQL) assessments in dementia capture what is important, to form a coherent basis for guiding research and clinical and policy decisions. This study investigated structural validity of HRQL assessments made using the DEMQOL system, with particular interest in studying domains that might be central to HRQL, and the external validity of these HRQL measurements.

Methods: HRQL of people with dementia was evaluated by 868 self-reports (DEMQOL) and 909 proxy reports (DEMQOL-Proxy) at a community memory service.

Comparison of general population, patient, and carer utility values for dementia health states.

Utility values to estimate quality-adjusted life years (QALYs) for use in cost-utility analyses are usually elicited from members of the general population. Public attitudes and understanding of dementia in particular may mean that values elicited from the general population may differ from patients and carers for dementia health states. This study examines how the population impacts utility values elicited for dementia health states using interviewer-administered time tradeoff valuation of health states defined by the dementia-specific preference-based measures DEMQOL-U (patient-report) and DEMQOL-Proxy-U (carer-report).