Financial Health of People Living With Dementia and Their Informal Care Partners: Protocol for a Mixed Methods Study

Area of Science:

• Gerontology
• Health Economics
• Public Health

Background:

• Financial toxicity, or financial strain, significantly impacts individuals with chronic conditions and their care partners.
• Populations with health disparities, such as those with dementia, experience exacerbated financial toxicity due to systemic inequities.
• Existing research on financial toxicity primarily focuses on cancer patients, with limited data on dementia populations.

Purpose of the Study:

• To adapt a survey for assessing financial toxicity in people living with dementia and their care partners.
• To characterize the extent and components of financial toxicity within this population.
• To amplify the voices and experiences of individuals with dementia and their care partners regarding financial toxicity through participatory methods.

Main Methods:

• A mixed-methods approach combining adapted validated instruments and photovoice.
• Development of a specialized financial toxicity survey for dementia dyads.
• Quantitative analysis of survey data from 100 dyads using descriptive statistics and regression models.
• Qualitative data collection through photovoice, integrating with quantitative findings via the pillar integration process.

Main Results:

• Study is ongoing; quantitative and qualitative results are anticipated by December 2023.
• The integrated findings will establish a comprehensive baseline understanding of financial toxicity in dementia care.
• Anticipated results will provide critical insights into the lived experiences of financial toxicity.

Conclusions:

• This study is among the first to investigate financial toxicity in the context of dementia care.
• Findings will guide the development of interventions to mitigate the financial burden of dementia care.
• The research protocol can serve as a model for studying financial toxicity in other chronic disease populations.