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Randomized Controlled Trial
. 2025 Jan;73(1):63-73.
doi: 10.1111/jgs.19200. Epub 2024 Sep 24.

Caring for dementia caregivers: How well does social risk screening reflect unmet needs?

Victoria A Winslow  1 , Stacy Tessler Lindau  1   2 , Elbert S Huang  2   3 , Spencer Asay  4 , Amber E Johnson  4 , Soo Borson  5 , Katherine Thompson  2 , Jennifer A Makelarski  1
Affiliations
Randomized Controlled Trial

Caring for dementia caregivers: How well does social risk screening reflect unmet needs?

Victoria A Winslow et al. J Am Geriatr Soc. 2025 Jan.

Abstract

Background: Unmet social and caregiving needs can make caregiving for a person with dementia more difficult. Although national policy encourages adoption of systematic screening for health-related social risks (HRSRs) in clinical settings, the accuracy of these risk-based screening tools for detecting unmet social needs is unknown.

Methods: We used baseline data from dementia caregivers (N = 343) enrolled in a randomized controlled trial evaluating CommunityRx-Dementia, a social care intervention conducted on Chicago's South Side. We assessed caregivers' (1) unmet social and caregiving needs by querying need for 14 resource types and (2) HRSRs using the Center for Medicare & Medicaid Services (CMS) Accountable Health Communities (AHC) screening tool. Using unmet social needs as the reference, we examined the sensitivity of the AHC tool to detect food, housing, and transportation needs. Analyses were stratified by gender.

Results: Most caregivers were women (78%), non-Hispanic (96%), Black (81%), partnered (58%) and had an annual household income ≥$50K (64%). Unmet social and caregiving needs were similarly prevalent among women and men caregivers (87% had ≥1 need, 43% had ≥5 needs). HRSRs were also prevalent. The most common HRSR was lack of social support (45%). Housing instability, difficulty with utilities and having any HRSRs were significantly more prevalent among women (all p < 0.05). The AHC screener had low sensitivity for detecting unmet food (39%, 95% confidence interval [CI]: 27%-53%), housing (42%, 95% CI: 31%-53%), and transportation (22%, 95% CI: 14%-31%) needs. Sensitivity did not differ by gender for food (41% for women and 30% for men, p = 0.72) or housing (44% for women and 29% for men, p = 0.37) needs. For transportation needs, sensitivity was 27% for women versus 0% for men (p = 0.01).

Conclusions: Men and women caregivers have high rates of unmet social needs that are often missed by the CMS-recommended risk-based screening method. Findings indicate a role for need-based screening in implementing social care.

Keywords: caregiving; dementia; health‐related social risks; social care.

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Conflict of interest statement

Stacy Tessler Lindau was the founder and owner of a social impact company, NowPow, LLC, which was acquired by Unite USA, Inc. (dba Unite Us) in 2021. Neither the University of Chicago nor UChicago Medicine is endorsing or promoting Unite Us or its business, products, or services. Stacy Tessler Lindau is an unpaid advisor to and holds stock in Unite Us, LLC. Stacy Tessler Lindau is co‐founder and Chief Innovation Officer of STEAMe, LLC. Stacy Tessler Lindau is an editor on Female Sexual Dysfunction for UpToDate and received royalties <$100/year in 2019, 2020 for this work. Subsequent royalties have been paid to the University of Chicago. Stacy Tessler Lindau and her spouse own equity in Glenbervie Health, LLC, an entity unrelated to the topic of this study. Preliminary data from this manuscript were presented at the Gerontological Society of America on November 8, 2023 (https://gsa2023.eventscribe.net/), the Interdisciplinary Association for Population Health Sciences on October 3, 2023 (https://iaphs.org/conference/conference-program/), and submitted to the University of Chicago College Center for Research and Fellowships Undergraduate Research Symposium on February 12, 2024.

Figures

FIGURE 1
FIGURE 1
Rates of (A) unmet needs and (B) health‐related social risks (HRSRs) among dementia caregivers, overall.
FIGURE 2
FIGURE 2
Rates of (A) unmet needs and (B) health‐related social risks (HRSRs) among dementia caregivers, by gender. Asterisk (*) indicates p‐value significant at p < 0.05; (**) indicates p‐value significant at p < 0.01.
FIGURE 3
FIGURE 3
Sensitivity, specificity, and predictive value of the Accountable Health Communities screener for unmet needs (A—food, B—housing, and C—transportation), overall. NPV, negative predictive value; PPV, positive predictive value.
FIGURE 4
FIGURE 4
Sensitivity, specificity, and predictive value of the Accountable Health Communities screener for unmet needs (A—food, B—housing, and C—transportation) by gender. NPV, negative predictive value; PPV, positive predictive value. Asterisk (*) indicates p‐value significant at p < 0.05.
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