Accepted for/Published in: JMIR Formative Research
Date Submitted: Jan 31, 2024
Date Accepted: Jul 25, 2024
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Ascertaining Out-of-Pocket Costs of Dementia Care: A weekly Online Survey-based Approach
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
Citation
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Copyright
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