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

Abstract

BACKGROUND There is a growing body of academic literature focusing on the significant financial burdens placed on cancer patients, but little evidence on the impact of rising costs of care in other vulnerable patients and caregivers. This financial strain, also known as financial toxicity, can impact patients’ and caregivers’ behavioral, psychosocial, and material domains. New evidence suggests that populations experiencing health disparities, including those with dementia, face limited access to health care, employment discrimination, income inequality, and higher burdens of disease, exacerbating financial toxicity. OBJECTIVE The three study aims are: (1) adapt a survey to capture financial toxicity in patients with dementia and their caregivers, (2) characterize the degree and magnitude of different components of financial toxicity in this population, and (3) empower the voice of this population through imagery and critical reflection on their perceptions and experiences relating to financial toxicity. METHODS This study employs a qualitative and quantitative mixed-methods approach to comprehensively characterize financial toxicity among older adults with dementia and their care partners. To address Aim 1, we will adapt elements from prior validated and reliable instruments including the Comprehensive Score for Financial Toxicity (COST) and Patient-Reported Outcomes Measurement Information System (PROMIS) to develop a financial toxicity survey specific to dyads of people living with dementia and their caregivers. A total of 100 dyads will complete the survey and data will be analyzed using descriptive statistics and regression models to address Aim 2. Aim 3 will be addressed using the process of Photovoice, which is a qualitative, participatory research method that combines photography, verbal narratives, and critical reflection by groups of individuals to capture aspects of their environment and experiences with a certain topic. Quantitative results and qualitative findings will be integrated using a validated, joint display table mixed methods approach called the Pillar Integration Process. RESULTS This study is ongoing with quantitative and qualitative results expected no later than the end of December 2023. Integrated findings will enhance the understanding of financial toxicity in individuals living with dementia and their caregivers by providing a comprehensive baseline assessment. CONCLUSIONS As one of the first studies on financial toxicity related to dementia care, findings from our mixed methods approach will support the development of new strategies for improving costs of care. While this work focuses on those living with dementia, this protocol could be replicated for patients suffering from other diseases as well and serve as a blueprint for future research efforts in this space. CLINICALTRIAL N/A