The Role of Care Navigators Working with People with Dementia and Their Caregivers

Article type: Research Article

Authors: Bernstein, Alissa^{a; b; *} | Harrison, Krista L.^{b; c} | Dulaney, Sarah^d | Merrilees, Jennifer^d | Bowhay, Angela^e | Heunis, Julia^d | Choi, Jeff^d | Feuer, Julie E.^d | Clark, Amy M.^e | Chiong, Winston^d | Lee, Kirby^d | Braley, Tamara L.^e | Bonasera, Stephen J.^e | Ritchie, Christine S.^{b; c} | Dohan, Dan^a | Miller, Bruce L.^d | Possin, Katherine L.^{b; d}

Affiliations: [a] Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, San Francisco, CA, USA | [b] Global Brain Health Institute, University of California, San Francisco, San Francisco, CA, USA | [c] Division of Geriatrics, University of California, San Francisco, San Francisco, CA, USA | [d] Memory and Aging Center, Department of Neurology, University of California, San Francisco, San Francisco, CA, USA | [e] Department of Internal Medicine, Division of Geriatrics, Home Instead Center for Successful Aging, Omaha, NE, USA | [f] Department of Medicine and Clinical Pharmacy, University of California, San Francisco, San Francisco, CA, USA

Correspondence: [*] Correspondence to: Alissa Bernstein, PhD, MPH, 3333 California Street Suite 265, Box 0936, San Francisco, CA 94118, USA. Tel.: +1 415 279 7963; E-mail: alissa.bernstein@ucsf.edu.

Abstract: Background:Care navigation is an approach to personalized care management and care coordination that can help overcome barriers to care. Care navigation has not been extensively studied in dementia, where health care workforce innovations are needed as a result of increasing disease prevalence and resulting costs to the health care system. Objective:To identify facilitators and barriers to care navigation in dementia and to assess dementia caregiver satisfaction with care navigation. Methods:Methods include qualitative research (interviews, focus groups, observations) with “Care Team Navigators” (CTNs) who were part of a dementia care navigation program, the Care Ecosystem, and a quantitative survey with caregivers about their experiences with CTNs. Transcripts were analyzed to identify themes within the data. Results:CTNs identified the following facilitators to care navigation in dementia: working closely with caregivers; providing emotional support; tailoring education and resources; and coordinating with a clinical team around issues ranging from clinical questions to financial and legal decision-making. The barriers CTNS identified included burn-out, the progressive nature of the disease; coordinating with primary care providers; and identifying resources for dyads who are low-income, do not speak English, or live in rural areas. Caregivers across both sites highly rated CTNs, though satisfaction was higher among those in Nebraska and Iowa. Conclusions:Innovative approaches to care delivery in dementia are crucial. Care navigation offers a feasible model to train unlicensed people to deliver care as a way to deliver larger-scale support for the growing population of adults living with dementia and their caregivers.

Keywords: Care navigation, caregivers, dementia, health care workforce

DOI: 10.3233/JAD-180957

Journal: Journal of Alzheimer's Disease, vol. 71, no. 1, pp. 45-55, 2019