5 Ways to Support Care Partners of People Living with Dementia
By Catherine Riffin, Lilla Brody, and Francesca Falzarano
A recent conference yielded recommendations for engaging and supporting care partners of adults living with Alzheimer’s disease and related dementias.
More than six million adults in the United States are affected by Alzheimer’s disease and related dementias (ADRD). Many of these adults rely on unpaid care partners—typically a family member or friend—to help with their daily needs.
Care partners are often referred to as the “backbone” of health and long-term services and supports (LTSS) systems because of their vital contributions to care delivery processes. However, the needs of these care partners are too often overlooked in these settings.
Decades of research have demonstrated the negative effects of care partner burnout, which has significant implications for care partners, care recipients, and care delivery systems. Interdisciplinary experts across the research-practice-community continuum agree that systematic efforts to engage and support care partners are imperative to optimizing high-quality care for individuals with ADRD.
On October 1, 2021, our interdisciplinary team of researchers, clinicians, and policy representatives hosted The 2021 Conference on Engaging Family and Other Unpaid Caregivers of Persons with Dementia in Healthcare Delivery with funding from the National Institute on Aging. The goal of the conference was to establish a policy- and practice-aligned research agenda for enhancing ADRD care partner engagement and support in health and LTSS settings.
Members of the conference steering committee and conference attendees represented five stakeholder groups: care partners of persons with ADRD, healthcare providers, researchers, payers, and individuals from nonprofit organizations. In total, 65 thought leaders, including Dr. Robyn Stone, co-director of the LeadingAge LTSS Center @UMass Boston, and Dr. Verena Cimarolli, the LTSS Center’s director of health services research, attended the hybrid event.
The event opened with a series of six panels representing the perspectives of:
- ADRD care partners.
- Foundations and nonprofit organizations.
- Policy advocates.
- Intervention researchers.
- Implementation scientists.
- Health systems and providers.
The conference panels set the stage for consensus activities in which attendees generated key recommendations in small group discussions. The larger group then identified five priorities that are critical to advancing future efforts to promote ADRD care partner engagement and support:
- Identification and Assessment: Establish best practices for effectively and sensitively identifying and assessing ADRD care partners in health and LTSS settings. Example: Implement a screening tool that LTSS providers can use to assess the needs of care partners during their visits with residents.
- Care Partner Support: Design evidence-based practices and training programs to support ADRD care partners across the continuum of care. Example: Develop and evaluate programs to educate care partners and prepare care partners to transition their care recipients into LTSS settings.
- Provider Education and Training: Develop education and training programs to support healthcare providers in delivering effective and compassionate family-centered ADRD care. Example: Create training modules designed to help providers navigate “shared care” encounters to enhance communication between family and formal care providers, including nursing staff, in LTSS settings.
- Reimbursement: Identify incentives to promote the LTSS system’s uptake of care partner reimbursement codes, evaluate the effects of this uptake on macro-level outcomes, and use evaluation findings to inform policy changes. Example: Evaluate longitudinal benefits of uptake of ADRD care partner-focused reimbursement codes on organizational outcomes, such as turnover and job satisfaction among LTSS staff.
- Technology: Examine technologies that can facilitate the remote delivery of interventions and support for persons with dementia and their care partners. Example: Use tablets to include long-distance care partners in medical encounters and social visits with LTSS residents.
ADVANCING AND SUSTAINING CARE PARTNER ENGAGEMENT
Conference participants identified two core elements for advancing future work in each of the priorities described above.
- Implementation Science: Research-practice-community partnerships are needed to identify best practices for supporting future implementation, dissemination, and sustainability of ADRD caregiver interventions across community, healthcare, and LTSS contexts. One option: evaluate ways to expand the scale and reach of evidence-based interventions to enhance sustained care-partner support, while tailoring programs to specific service lines, including residential care, adult day centers, and home health services.
- Inclusion and Equity: The potential impact of ADRD care partner interventions is contingent on leveraging models of inclusion, equity, and intersectionality throughout the research, clinical, and policy-making processes. Community-driven approaches should be used to engage diverse groups of individuals from traditionally marginalized groups in every aspect of the research process, from inception to dissemination.
With estimates showing that close to 70% of older adults (aged 65+) will need LTSS at some point, stakeholders across all areas of the LTSS sector are important catalysts for enacting change to promote the implementation of evidence-based interventions. LTSS organizations are a particularly vital component of the research-practice-community partnership pipeline that we need to help us achieve actionable and sustainable changes that are necessary to support ADRD care partners.
Catherine Riffin is assistant professor of psychology in medicine; Lilla Brody is a research assistant, and Francesca Falzarano is a postdoctoral associate in medicine at Weill Cornell Medicine in New York.