Development of Measures to Screen for Financial Hardship in Alzheimer's Disease and Dementia

Development of Measures to Screen for Financial Hardship in Alzheimer's Disease and Dementia

Alzheimer's Disease and related dementias (AD/ADRD) are common and debilitating conditions. Financial hardship, a multidimensional construct of financial strain, financial stress and asset depletion, is common in AD/ADRD due to exorbitant out-of-pocket spending such as for long-term care, lower work productivity and income for their caregivers that can last for decades after disease onset, and difficulty deciding between nursing home care or home-based care while negotiating insurance coverage. People from historically marginalized groups can experience a double disparity with fewer financial resources to manage AD/ADRD and a greater risk of AD/ADRD. Screening for financial hardship in AD/ADRD is key for addressing the needs of patients and caregivers but critical barriers include a lack of suitable screening measures. Current measures are very general and meant for people without chronic medical conditions or are specific to other diseases. To fill this gap, this study will create a suite of measures that can screen for financial hardship in people with AD/ADRD and their families and caregivers. The measures will include a set to assess caregiver burden; a set to assess patient hardship as reported by the caregiver for patients who cannot report for themselves; and a set of patient-reported measures for patients that are able to report for themselves. To create these financial hardship screening measures, the project will conduct the following aims. Aim 1- Develop financial hardship screening measures for Alzheimer's Disease and related dementias: Using interviews with both caregivers and people with AD/ADRD, key indicators of financial hardship that are unique to AD/ADRD and the point in the lifespan in which it occurs will be identified. The ways that social and caregiver network size affect financial hardship will also be explored. Using the interviews and previous measures, preliminary measures will be created and will be reviewed by experts and a patient and caregiver advisory board. Aim 2- Create item response theory-based screening measures for financial hardship measures in Alzheimer's Disease and related dementias: Large samples of people with AD/ADRD (n=1000) and caregivers (n=1000) will be surveyed and item response theory will be used to evaluate and revise the measures and create scoring algorithms. A sample of additional caregivers matched to primary caregivers (n=400) will also be recruited to evaluate interrater reliability of the measures. Aim 3- Evaluate the financial hardship measures across patient and caregiver populations: Using the sample from Aim 2 and item response theory, we will evaluate the financial hardship screening measures across the following groups to ensure they are unbiased and reflect true differences: race/ethnicity; patient comorbidities; stage of AD/ADRD; caregiver relationship; social network size; number of caregivers; financial support provided; and caregiver's own health status (disability, comorbidities). The resulting measures will improve identification of financial hardship in AD/ADRD.

This study investigates the financial hardship experienced by individuals with Alzheimer's Disease and Alzheimer's Disease-Related Dementias (AD/ADRD) and their caregivers. The research comprises qualitative interviews, content validation surveys, and quantitative data collection to assess financial stressors, caregiving costs, and coping mechanisms.

The first phase involves conducting semi-structured interviews with individuals diagnosed with AD/ADRD and their caregivers. These interviews will be conducted virtually, by phone, or in person, with most expected to take place remotely. Informed consent will be obtained either verbally or through signed documentation, as appropriate. Participants will be interviewed separately to ensure privacy, particularly in cases where both the patient and their caregiver are involved. The interview guide will explore changes in financial circumstances before and after diagnosis, general and specific aspects of financial hardship-including financial stress, financial strain, and asset depletion-contributing factors to financial hardship, strategies used to mitigate financial burdens, and the impact of financial hardship on well-being, decision-making, and care options. Additionally, the study will examine financial management practices, including the transition of financial responsibility from the patient to caregivers, as well as the role of caregivers and social networks in financial management and hardship buffering. Interviews will be recorded and transcribed, with Spanish transcripts translated into English. Participants will receive a small incentive for participation. If a caregiver or patient expresses interest in the other member of the dyad participating, they will be contacted via email or phone for potential enrollment.

Following the qualitative phase, a structured survey will be distributed to validate the relevance and applicability of financial hardship indicators identified during the interviews. Participants will receive an email with a study invitation and a survey link, where they will review definitions of financial hardship domains, assess the relevance of each survey item based on the perspective of the caregiver and patient, and provide demographic and job-related information. To optimize participant burden, randomized subsets of the survey will be assigned if the item bank is extensive. Participants will receive a small incentive for survey completion.

After eligibility screening, participants will complete a financial hardship survey either online or via mail. Online participants will review an electronic consent statement before proceeding, while mail-in participants will sign and return a consent form along with their completed survey using a prepaid return envelope. The survey will collect data on financial stressors, caregiving costs, and coping mechanisms. Participants will receive informational handouts on financial support resources and mental health care services. The study will examine financial caregiving networks and social support structures, as well as how financial hardship influences long-term care decisions and overall well-being. Participants will be compensated for their time and contribution to the study.

Quality control and data management processes will ensure the integrity and accuracy of study data. Surveys and interview transcripts will undergo validation checks to ensure data consistency. Data will be categorized using structured coding frameworks. A mixed-methods approach will be employed for analysis, using qualitative thematic analysis for interview data and statistical modeling for survey responses.

This study aims to improve the understanding of financial hardship among individuals with AD/ADRD and their caregivers, providing critical insights to inform policy interventions and support strategies for affected individuals and their families.

Inclusion Criteria:

• Adults aged 18 years or older

• One of the following:

  • Clinical diagnosis of Alzheimer's disease or related dementia
  • Being a caregiver to individuals with clinical diagnosis of Alzheimer's disease or related dementia

• Able to read and speak English or Spanish

• Able to provide informed consent

• Residing in the United States

Exclusion Criteria:

• Cognitive impairment precluding informed consent