Skip to content

2022 Conference Presentation

9 September 2022

Quantifying out-of-pocket costs in dementia care partner research: the costs of behaviors

Walter Dawson , Oregon Health & Science University, Portland, OR, USA , United States

Sarah Gothard, Nora Mattek, Jeffrey Kaye, Allison Lindauer
Oregon Health & Science University, Portland, OR, USA


Introduction: The family-level financial impacts associated with caring for an individual living with dementia are often high. A significant contributor to care demands, and therefore costs, are the behavioral and psychological symptoms of dementia (BPSD) (e.g., depression, irritability, agitation, anxiety), which as many as 97% of individuals living with dementia experience during the disease course. Support via TEchnology: Living and Learning with Advancing AD (STELLA) is a US-developed telehealth-based intervention designed to address BPSD through a personalized approach to teach family care partners (CPs) strategies to help manage BPSD.

Objectives: To better understand the relationships between BPSDs of dementia and family-level out-of-pocket costs that may occur through a weekly electronic survey administered to CPs during their participation in the STELLA intervention.

Methods: Weekly surveys of CPs enrolled in STELLA (n=12) were carried out electronically, which included cost-specific questions. These questions focused on out-of-pocket costs incurred from hospitalizations and emergency department (ED) utilization, primary care visits, use of paid in-home assistance, prescription drugs, and non-prescription medications. The time dedicated by CPs to these activities was also captured within these weekly surveys.

Results: The out-of-pocket costs most frequently reported by CPs during their participation in the STELLA intervention were prescription drug related (11 CPs), while costs associated with hospitalizations and ED utilization were the least frequently reported (4 CPs). In terms of time devoted by CPs to caring-related activities, the use of paid in-home assistance was the most frequently reported by the participants as taking the most amount of time.

Conclusions: A longitudinal weekly survey-based approach to measuring CP costs and time is an innovative approach to assessing dementia-related costs. This novel approach could offer lessons for the design and implementation of future dementia cost-based studies, and may offer further insights for health and long-term care system policy when implementing new family-based interventions.


Skip to toolbar