Purpose of the study: The evidence base for dementia care management interventions for informal caregivers (CGs) is strong, yet enrollment and sustained engagement in academic and community-based research trials is low. This study sought to examine rates and correlates of participation in a community-based, telephone-delivered dementia care management program designed to address logistic and practical barriers to participation in CG trials and services.
Design and methods: Participants included 290 CGs of older, community-dwelling, low-income care recipients (CRs) who met criteria for enrollment in a collaborative dementia care management program that provides assessment, psychosocial support and education, and connection to community resources via telephone. Cross-sectional analyses examined the association between CG-related (e.g., financial status, relationship to CR, caregiving burden) and CR-related (e.g., functional limitations, symptom severity) factors and CG enrollment and engagement.
Results: The majority of CGs were non-Hispanic White, female, financially stable, and adult children of the CRs. Over half of CGs lived with the CR and provided 20 or more hours of care per week. Roughly half of CGs refused care management services. Adjusted logistic regression models revealed that perceived caregiving burden and financial status were related to initial enrollment and engagement in services once enrolled, respectively.
Implications: A significant proportion of CGs refuse free, convenient, evidence-based dementia care management services, underscoring the need for further examination of correlates of program acceptance. Nonetheless, community-based programs that address barriers may improve enrollment and engagement rates among CGs, including those who are especially vulnerable to negative CG and CR outcomes.
Keywords: Disease management; Patient-centered care; Psychosocial support systems.
Published by Oxford University Press on behalf of The Gerontological Society of America 2016. This work is written by (a) US Government employee(s) and is in the public domain in the US.