TY - JOUR
T1 - The associations between unmet needs with protective factors, risk factors and outcomes among care partners of community-dwelling persons living with dementia
AU - Antonsdottir, Inga Margret
AU - Leoutsakos, Jeannie Marie
AU - Sloan, Danetta
AU - Spliedt, Morgan
AU - Johnston, Deirdre
AU - Reuland, Melissa
AU - Lyketsos, Constantine
AU - Amjad, Halima
AU - Samus, Quincy M.
N1 - Funding Information:
This study was supported by a Health Care Innovation Award Round Two demonstration project sponsored by the Centers for Medicare and Medicaid Services (1C1CMS331332, 09/01/2014-11/30/2017, NCT02395731), and by a grant from the National Institute on Aging (R01 AG046274, 08/15/2014-04/30/2019, NCT02396082). The funding sources had no involvement in the study design, collection, analysis or interpretation of data, writing of the report or the decision to submit the article for publication. Inga M. Antonsdottir, BSN, RN: no grant support; Jeannie Leoutsakos, PhD: grant support from NIA, CMS; Danetta Sloan, PhD: None; Morgan Spliedt, MS: none; Deirdre Johnston, MB,BCh: grant support from NIA, CMS; Melissa Reuland, MS: None; Constantine Lyketsos, MD, MHS: None; Halima Amjad, MD: None; Quincy M. Samus, PhD: funding support from NIH, CMS, Brightfocus Foundation, Centene Corporation, Sibley Memorial Foundation, Weber Human Services (Utah, U.S.)
Publisher Copyright:
© 2022 Informa UK Limited, trading as Taylor & Francis Group.
PY - 2023
Y1 - 2023
N2 - 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.
AB - 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.
KW - Alzheimer’s disease
KW - care partners
KW - caregiving
KW - home and community-based support
KW - intervention
KW - unmet needs
UR - http://www.scopus.com/inward/record.url?scp=85127188228&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85127188228&partnerID=8YFLogxK
U2 - 10.1080/13607863.2022.2046698
DO - 10.1080/13607863.2022.2046698
M3 - Article
C2 - 35321599
AN - SCOPUS:85127188228
SN - 1360-7863
VL - 27
SP - 334
EP - 342
JO - Aging and Mental Health
JF - Aging and Mental Health
IS - 2
ER -