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

> **NIH NIH R01** · FRED HUTCHINSON CANCER CENTER · 2024 · $775,512

## Abstract

PROJECT ABSTRACT/SUMMARY
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 statu...

## Key facts

- **NIH application ID:** 10953849
- **Project number:** 1R01AG088347-01
- **Recipient organization:** FRED HUTCHINSON CANCER CENTER
- **Principal Investigator:** Salene M. W. Jones
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $775,512
- **Award type:** 1
- **Project period:** 2024-08-15 → 2029-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10953849

## Citation

> US National Institutes of Health, RePORTER application 10953849, Development of Measures to Screen for Financial Hardship in Alzheimer's Disease and Dementia (1R01AG088347-01). Retrieved via AI Analytics 2026-06-12 from https://api.ai-analytics.org/grant/nih/10953849. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*