Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Jul 15;23(1):428.
doi: 10.1186/s12916-025-04264-y.

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

Huanyu Zhang  1 , Benjamin R Underwood  2   3 , Sabina London  4 , Huitong Zhao  5 , Jiazhou Yu  6 , Da Feng  7 , Shanquan Chen  8   9
Affiliations

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

Huanyu Zhang et al. BMC Med. .

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.

Keywords: Continuity of care; Dementia; Race/ethnicity; Sex; Social support.

PubMed Disclaimer

Conflict of interest statement

Declarations. Ethics approval and consent to participate: The use of secondary de-identified data makes this study exempt from Institutional Review Board review. All human subjects in the HRS provided informed consent. Consent for publication: Not applicable. Competing interests: BRU is the research and development director at CPFT and elected vice chair of the faculty of old age psychiatry at the Royal College of Psychiatrists. He is the clinical director of the Windsor Unit at Fulbourn Hospital (CPFT), which delivers clinical trials in dementia/mild cognitive impairment for academic and commercial organisations without personal benefit and is the clinical lead for dementia for the NIHR Clinical Research Network (CRN) in the East of England. His lectureship is funded by Gnodde Goldman-Sachs Giving. He has been the principal investigator on trials for Axovant, Pfizer, and EIP Pharma amongst others; his institution has benefited from payment for research carried out but he has not personally received any money. He is a member of an advisory board for Eli Lilly. Other authors declare no conflict of interest with this work.

Figures

Fig. 1
Fig. 1
STROBE diagram showing the selection of the participants and matching
Fig. 2
Fig. 2
Controlled interrupted time series analysis of unmet social support in dementia diagnosis cohort (square points) and non-diagnosis cohort (triangle points), by overall. The dashed or solid lines are the model fit for two cohorts
Fig. 3
Fig. 3
Controlled interrupted time series analysis of unmet social support in dementia diagnosis cohort (square points) and non-diagnosis cohort (triangle points), by race/ethnicity. The dashed or solid lines are the model fit for two cohorts
Fig. 4
Fig. 4
Controlled interrupted time series analysis of unmet social support in dementia diagnosis cohort (square points) and non-diagnosis cohort (triangle points), by sex. The dashed or solid lines are the model fit for two cohorts
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Arrighi HM, Gelinas I, McLaughlin TP, Buchanan J, Gauthier S. Longitudinal changes in functional disability in Alzheimer’s disease patients. Int Psychogeriatr. 2013;25(6):929–37. - PubMed
    1. Amjad H, Roth DL, Samus QM, Yasar S, Wolff JL. Potentially unsafe activities and living conditions of older adults with dementia. J Am Geriatr Soc. 2016;64(6):1223–32. - PMC - PubMed
    1. Rahman MM, Rosenberg M, Flores G, Parsell N, Akter S, Alam MA, Rahman MM, Edejer T. A systematic review and meta-analysis of unmet needs for healthcare and long-term care among older people. Health Econ Rev. 2022;12(1):60. - PMC - PubMed
    1. Sm-Rahman A, Meinow B, Hyden LC, Kelfve S. Long-term care use among people living with dementia: a retrospective register-based study from Sweden. BMC Geriatr. 2022;22(1):998. - PMC - PubMed
    1. World Health Organization: Continuity and coordination of care: a practice brief to support implementation of the WHO Framework on integrated people-centred health services. 2018.

LinkOut - more resources