Ascertaining Out-of-Pocket Costs of Dementia Care: Feasibility of A Weekly Online Survey-based Approach (Preprint)

Abstract

Background: Caring for a family member with dementia is costly. Here we examine costs related to caregiving from surveys collected during a behavioral intervention study, Support via TEchnology: Living and Learning with Advancing AD (STELLA) a telehealth-based intervention.Objective: To understand relationships between behavioral symptoms and out-of-pocket Alzheimer's disease and related dementias (ADRD) costs. Methods:In order to understand relationships between behavioral symptoms and out-of-pocket ADRD costs, electronic weekly surveys queried STELLA care partners (CPs) (n=13) about out-of-pocket costs associated with care-related activities, CP time, and CP and care recipient physical and mental health.Results: Weekly capture of the out-of-pocket costs of care-related activities was reported for the majority of the eight weeks when a CP was queried online during a seven-and-a-half-month study period. The impacts on costs related to behavioral symptom frequency, CP reactivity, and burden were heterogenous.Conclusions: This survey-based approach offers lessons for designing and implementing future ADRD cost-focused studies and CP supportive telehealth-based interventions. Clinical Trial: ClinicalTrials.gov, NCT04335110