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.
