Psychosocial burdens in early- versus late-onset dementia: analysis of discrimination, stress, and loneliness in the All of Us Research Program.

Abstract

Background and objectives: Early-onset dementia (EOD, onset before age 65) is relatively rare but often devastating for patients and families. Individuals with dementia face stigma and psychosocial burdens; however, it is unclear whether those with EOD experience worse psychosocial outcomes than those with late-onset dementia (LOD) or no dementia. This study examined differences in psychosocial outcomes across EOD, LOD, and no-dementia groups.

Research design and methods: This cross-sectional study used data from the All of Us Research Program surveys and linked electronic health records (EHR). Diagnosis of dementia was identified through electronic health records (EOD [n = 442], LOD [n = 658], and without dementia [n = 79,035]). Outcomes included everyday discrimination, discrimination in healthcare settings, perceived stress, and loneliness. Negative binomial regression models were employed to compare outcomes by dementia status, adjusting for demographic, socioeconomic, and health-related covariates.

Results: EOD participants reported the highest mean levels of all psychosocial outcomes (e.g., everyday discrimination score of 8.3 in EOD vs 4.6 in LOD and 6.8 in no-dementia). In the fully-adjusted models, EOD was associated with significantly higher everyday discrimination (incidence rate ratio [IRR] = 1.30, 95% CI 1.05-1.62), discrimination in healthcare settings (IRR = 1.08, 95% CI 1.01-1.15), and perceived stress (IRR = 1.09, 95% CI 1.02-1.15) compared with LOD. No difference in loneliness was observed between EOD and LOD (IRR = 1.03, 95% CI 0.98-1.09). Compared with those without dementia, the EOD group also showed elevated levels of all outcomes. All differences remained significant after adjusting for covariates.

Discussion and implications: Findings highlight the unique challenges faced by young adults with EOD and underscore the need for targeted interventions to reduce psychosocial burden in this growing population. As the prevalence of EOD continues to rise, clinicians and policymakers should prioritize supportive resources to mitigate these disparities for EOD patients and their families.