Financial Impact of Support and Care in Alzheimer's disease and Related Dementias (FISCAL)

Family caregivers provide much of the support to people with Alzheimer’s disease (AD) and AD-related dementias
(ADRD) living in the community. As a result, caregivers for people with AD/ADRD may experience measurable declines
in financial well-being due to the costs of care, such as medical treatments and home modifications, or because of changes
to their employment status and income. These financial burdens are a particular concern for National Institute on Aging
(NIA) priority populations, including people who are Hispanic/Latino, Black/African American, or living in a rural area,
who experience racial and geographic disparities in economic well-being. However, no comprehensive measure of the
financial impacts of AD/ADRD care exists. Furthermore, few existing measures consider the caregiver’s broader social
network, even though they may impact the caregiver’s financial situation or experience indirect financial effects of care.
Therefore, the full extent of the financial impacts of AD/ADRD care on family caregivers and their social network
remains unknown. To address this gap, this study aims to: (1) Engage diverse family caregivers of people living with
AD/ADRD and their social network to identify areas of financial impact, (2) Develop and pilot a comprehensive
quantitative measure of the financial impact of caring for a person living with AD/ADRD, and (3) Validate a revised
measure of financial impact to accurately capture the experiences of caregivers of people living with AD/ADRD and their
networks. We will use a mixed methods approach incorporating interviews and surveys guided by the NIA Health
Disparities Framework and a family caregiving framework to identify both existing and novel areas of care-related
financial impacts. We will over-sample caregivers from three NIA priority populations: Hispanic/Latino, Black/African
American, and people living in rural areas. Drawing from best practices in survey design, we will engage with key
stakeholders including people with lived experience of AD/ADRD, clinicians, and researchers to develop candidate
measures. In partnership with an experienced survey research center, we will field an initial survey of 100 caregivers of
people with AD/ADRD, using both telephone and Internet surveys conducted in English and Spanish. We will use
exploratory factor analysis to evaluate the structure of the new measure and Rasch analysis to assess item redundancy and
adequacy of response options. Based on our quantitative results and additional feedback from stakeholders, we will revise
the measure and validate the instrument in an independent sample of 300 caregivers of people with AD/ADRD using the
same partnership and methods as the initial survey. The validation process will use confirmatory factor analysis, Rasch
analysis and other psychometric methods to assess the measure’s properties overall and within each of our three priority
populations. Our approach will result in a novel, validated measure of the unique financial impacts experienced by
caregivers of people with AD/ADRD. Our aims are designed to assure the measure is valid and reliable in the general
population and among Latino/Hispanic, Black/African American, and rural caregivers. Ultimately, this measure can be
used to better understand caregiving networks in AD/ADRD and will inform the development of interventions and
policies that will better support caregivers and families of people living with AD/ADRD.

Grant Number: 5R56AG088547-02
NIH Institute/Center: NIH
Principal Investigator: Erin Bouldin