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. 2023 Feb;27(2):334-342.
doi: 10.1080/13607863.2022.2046698. Epub 2022 Mar 24.

The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia

Inga Margret Antonsdottir  1   2 , Jeannie-Marie Leoutsakos  2 , Danetta Sloan  3 , Morgan Spliedt  2 , Deirdre Johnston  2 , Melissa Reuland  2 , Constantine Lyketsos  2 , Halima Amjad  4 , Quincy M Samus  2
Affiliations

The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia

Inga Margret Antonsdottir et al. Aging Ment Health. 2023 Feb.

Abstract

Objectives: Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes.

Method: A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors.

Results: Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics.

Conclusions: CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities.

Keywords: Alzheimer’s disease; care partners; caregiving; home and community-based support; intervention; unmet needs.

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Conflict of interest statement

Declaration of Interest: The Johns Hopkins University, and several manuscript authors (Drs. Samus, Lyketsos, and Johnston) may have potential financial interest in the technology (MIND at Home dementia care coordination program) cited in this publication. This arrangement has been reviewed and approved by the Johns Hopkins University in accordance with its conflict of interest policies.

Figures

Figure 1.
Figure 1.
Percent Unmet JHDCNA Care Partner Needs by Item (n=638).
See this image and copyright information in PMC

References

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