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

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.