Dementia is a degenerative neurological condition with no known cure that affects millions of people worldwide with significant social and economic costs. Given society’s resource constraints, health economists are often called upon to evaluate interventions to determine their value for money. Quality Adjusted Life Years, calculated using a utility weight, are a core component of such evaluations.
Standard preference elicitation methods were used to develop a dementia-specific utility weight based on the stated preferences of the Australian general public, people with dementia, and their caregivers. Rasch and psychometric analyses were used to identify five domains from the widely used Quality of Life—Alzheimer’s Disease instrument that represent quality of life for people with dementia: mood, physical health, memory, living situation, and ability to do things for fun. Discrete Choice Experiments with time duration were conducted online and through interviews to identify the underlying preferences of both members of the public and dementia dyads (people living with dementia and a family caregiver) in relation to health-related quality of life.
Challenges in relation to the design of Discrete Choice Experiments with time duration based on the Quality of Life—Alzheimer’s Disease and the recruitment of people with dementia and their caregivers living in the community were largely overcome to develop the AD-5D descriptive system, which allows the calculation of a utility value from any application of the Quality of Life—Alzheimer’s Disease instrument.