Using Care Navigation to Address Caregiver Burden in Dementia: A Qualitative Case Study Analysis

Senior WomenIn a recent article in Alzheimer’s & Dementia: Translational Research & Clinical Interventions, Alissa Bernstein, PhD, Krista Harrison, PhD, and Dan Dohan, PhD, along with their colleagues, provide an in-depth understanding of how, along with their colleagues, provide an in-depth understanding of how unlicensed but expertly trained dementia care navigators, supported by a small clinical team, can use phone and web-based care navigation to address caregiver burden among caregivers of people with dementia.

More than 15 million family members or friends care for individuals with Alzheimer's disease and related dementias in the United States, which involves providing emotional, physical, and practical support. Many caregivers experience burden and resulting health effects due to the intensive nature of caregiving. Caregiver burden, which has been studied extensively in the literature, may also be a factor leading to premature institutionalization of individuals with dementia.

Due to the growing population of people who will be diagnosed with dementia, there will be an increasing number of family caregivers, and most caregivers do not access supportive services. A significant challenge for the health care system is to find care models, such as those that use phone‐ and web‐based platforms, that can address the burdens and issues of access that caregivers face in a timely and cost‐effective manner. 

The researchers studied the Care Ecosystem model, which utilizes Care Team Navigators (CTNs). CTNs are trained and supervised by an expert clinical team comprised of an advanced practice nurse, a social worker, and a pharmacist, all of whom have dementia expertise. CTNs communicate regularly with caregivers, focusing on strategies to reduce caregiver guilt and frustration, manage patient‐related behavior, address caregiver depression, and improve the relationship between the caregiver and person with dementia. CTNs also coordinate with and triage cases to the clinical support team and the person with dementia's other providers as needed. 

The researchers identified, through qualitative interviews, focus groups, and case study analysis, the ways that care navigators worked to reduce caregiver burden by identifying patient and caregiver needs and tailoring their approaches to meet the specific social, cultural, economic, and geographic contexts of the caregiver-patient dyads with which they worked.  The findings demonstrate that there is an important role for active, highly engaged non‐clinician specialists. Findings from this qualitative study can be used to shape the approach of providers and community support services that work with caregivers of people with dementia.

Alissa Bernstein, PhDAlissa Bernstein, PhD
Alissa Bernstein, PhD, MPH, MA is a medical anthropologist and health policy researcher focused on understanding and improving the assessment, diagnosis, and care of Alzheimer’s disease and related dementias (ADRD), with a specific focus on primary care. She also conducts research focused on caregiver burden and access to supportive services among caregivers of people with ADRD.


Krista Harrison, PhDKrista Harrison, PhD
Krista Harrison, PhD, is a health services, policy and ethics researcher focused on improving systems of care for older adults with dementia and other serious illnesses who live in home- and community-based settings. Her expertise includes qualitative and quantitative research methods, health policy ethics, implementation science, and the translation of research to policy.


Dan Dohan, PhDDan Dohan, PhD
Dan Dohan is Professor of Health Policy, Surgery, and Social Medicine at UCSF where he serves as Deputy and Training Director at the Philip R. Lee Institute for Health Policy Studies as well as co-Director of the UCSF/UC Hastings Consortium on Law, Science, and Health Policy. Dr. Dohan's research focuses on the culture of medicine. Among his current projects, he is collaborating with IHPS faculty member Emily Finlayson, MD, on a national trial of clinic-based cultural change to improve surgical care for frail older adults.

Bernstein A, Merrilees J, Dulaney S, et al. Using care navigation to address caregiver burden in dementia: A qualitative case study analysis. Alzheimer’s & Dementia: Translational Research & Clinical Interventions (NY). 2020;6(1):e12010. Published 2020 May 6. doi:10.1002/trc2.12010