Discontinuity of social support among US adults with cognitive impairment before and after the confirmed diagnosis of dementia: a matched ambidirectional cohort study

Abstract

Abstract Background Despite increased attention on dementia, much remains unknown about the integration of clinical and non-clinical care, particularly regarding long-term social support, a primary source of non-clinical care. This study uniquely examines the effect of receiving a formal dementia diagnosis on the continuity of social support, an understudied transition point in dementia care pathways.

Methods In this ambidirectional cohort study, we examined ten waves of data from the Health and Retirement Survey(HRS) for US adults over 50 through 2000–2018. Eligibility was limited to participants with cognitive impairment. The exposure group were people with a confirmed dementia diagnosis (N = 1261), and the control group were matched by age, sex, race/ethnicity, and survey wave, but without a confirmed diagnosis (N = 12,604). Unmet social support was defined as reporting physical disability without receiving corresponding social support. Physical disability was assessed using measures of basic activities of daily living (BADLs) and instrumental activities of daily living (IADLs). The data were fitted using controlled interrupted time series analysis to explore the continuity of unmet social support before and after a diagnosis.

Results After dementia diagnosis, adults experienced a significant increase in unmet IADL support needs (coef = 0.10, 95% CI [0.07, 0.13]), particularly for making phone calls (coef = 0.74, 95% CI [0.16, 1.33]). By race/ethnicity, Hispanics showed a significant rise in unmet BADL support needs (coef = 0.74, 95% CI [0.03, 1.46]), especially for eating assistance (coef = 1.58, 95% CI [0.17, 2.99]). Blacks experienced increased unmet BADL needs in toileting (coef = 1.52, 95% CI [0.57, 2.47]) and IADL support (coef = 0.09, 95% CI [0.00, 0.17]). Sex disparities were also identified, with females showing decreased unmet BADL support(coef = − 0.55, 95% CI [− 1.03, − 0.06]) but increased unmet IADL support (coef = 0.08, 95% CI [0.04, 0.11]), while males experienced increased unmet toileting (coef = 0.78, 95% CI [0.03, 1.53]) and IADLs support (coef = 0.14, 95% CI [0.10, 0.18]).

Conslusions Our study identifies a disconnect in the care provided to individuals with dementia before and after their diagnosis. Notably, post-diagnosis, we observed substantial disparities in unmet social support needs across various racial groups. This highlights the need for more cohesive and equitable care strategies in the dementia care continuum.