Abstract
The treatment and care of Alzheimer's disease and related dementias (ADRD) place a huge burden on
individuals, families, and healthcare systems. The estimated lifetime cost of care for an individual living with
ADRD is nearly $400,000. Caring for a loved one with ADRD can put family members in untenable financial
positions, such as having to decide between providing appropriate medical care for a loved one or paying for
other essential living costs. These hardships are exponentially worse for lower-income and otherwise
marginalized families, who often have inadequate insurance or resources for their loved ones with dementia.
Thus, there is a need to investigate and quantify the financial hardship that is experienced with ADRD, using
the National Institute on Aging Health Disparities Framework, with the ultimate goal of ameliorating this
financial hardship, particularly among families in socioeconomically diverse or disadvantaged groups.
Due to the lack of standardized, valid measurement tools, the true financial hardships from ADRD are
unknown, and continue to go unaddressed. Current measures of financial stress and strain are general and
grossly underestimate the burdens because they do not measure unique ADRD care-related challenges and
costs. The impact on spouses, partners, children, and even grandchildren are overlooked, leading to the
intergenerational costs of ADRD being ignored, with devastating impact. Therefore, we propose to develop and
validate novel item banks using best-in-the-field, psychometrically advanced, mixed-method approaches to
quantify financial hardship across families, including individuals living with ADRD and their families, partners,
and caregivers. These measures of financial hardship in ADRD will be publicly available to inform researchers
and policymakers about the extent of the burden and any disparities in who is most impacted. Ultimately, new
measurement tools of financial hardship are required to address these disparities and improve quality of life for
individuals living with ADRD, their families, partners, and caregivers, to provide early identification and proper
interventions. Four aims of this study include: 1) identify the experiences of financial hardship for individuals
living with ADRD and their family members, partners, and caregivers using qualitative methods, and develop
pools of items on financial hardship responsive to these experiences; 2) calibrate the item banks using Item
Response Theory and develop efficient, user-friendly measurement tools for use with individuals living with
ADRD, their families, partners, and caregivers; 3) establish reliability and evaluate construct validity of the
developed measures in individuals living with ADRD, their families, partners, and caregivers; and 4) devise an
efficient screening approach from the newly developed measures that identifies people most at risk of financial
hardship and validate it against a well-established set of demographic and socioeconomic variables.
