OBJECTIVES: Alzheimer’s disease (AD) dementia is a debilitating, progressive condition that often places caregiving responsibility on informal (unpaid) caregivers, causing a substantial burden to caregivers and society. Caregiver utility comprises an important part of this burden and should be considered when assessing interventions for AD dementia. This study aimed to quantify utility through directly eliciting utility values from the general public in the UK.

METHODS: Six health state vignettes were developed using published literature, online patient forums, and interviews with experts (N=5) including clinicians, caregivers, and caregiver advocates. Vignettes varied based on disease severity, caregiver-patient relationship and living situation. Health states were validated through further expert interviews (N=3) with clinicians and a caregiver. A pilot study was conducted with the general public (N=10) before finalization of the health states.

RESULTS: Face-to-face interviews were included with 109 respondents for the analysis. Mean TTO scores were elicited for the caregiver living with a patient with AD with mild (0.79; 95% CI: 0.74 to 0.84), moderate (0.65; 95% CI: 0.60 to 0.71) or severe dementia (0.49; 95% CI: 0.44 to 0.55) and for caregivers living separately from a patient with AD with mild (0.74; 95% CI: 0.70 to 0.79) or moderate dementia (0.71; 95% CI: 0.66 to 0.76). The utility of a caregiver of a person with AD with severe dementia being cared for in a nursing home (0.64, 95% CI: 0.58 to 0.71) was comparable to the utility of a caregiver living with a patient with AD with moderate dementia (0.65, 95% CI: 0.60 to 0.71).

CONCLUSIONS: This study quantifies the substantial burden of AD dementia caregiving across the AD dementia continuum. Overall, caregiver utility decreased with increasing severity of AD dementia.