The Impact of Informal Caregiving in Alzheimer’s Disease Dementia: A Health Utility Study in the UK
Author(s)
Belger M1, Dell’Agnello G2, Enstone A3, Wyn R3, Tockhorn-Heidenreich A2
1Eli Lilly and Company, Bracknell, SRY, UK, 2Eli Lilly and Company, Indianapolis, IN, USA, 3Adelphi Values Ltd, Bollington, UK
Presentation Documents
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.
Utility values (0 to 1) were elicited through time trade-off (TTO) interviews with members of the general public.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.
Conference/Value in Health Info
Value in Health, Volume 25, Issue 6, S1 (June 2022)
Code
PCR24
Topic
Patient-Centered Research
Topic Subcategory
Health State Utilities
Disease
Drugs, Neurological Disorders