GUEST EDITOR IN CHIEF
Jessica Zwerling, MD, MS, has a clinical focus on identifying risk factors for cognitive decline and dementia, as well as factors that promote successful aging, with particular attention on underserved, marginalized, and vulnerable populations. Zwerling’s research focuses on optimizing healthcare delivery systems and promoting healthy equity. Her work has been published in many peer-reviewed journals and has been shared at national and international invited conferences. She has developed the clinical and didactic programs used to enhance health professionals’ capacity to screen, diagnose, and develop personalized plans of care for patients with Alzheimer disease and related dementias for the Montefiore Health System. She also is a nationally recognized expert in aging/ dementia and serves as an adviser on multiple panels related to diversity in the workforce and recruitment of diverse populations in neurodegenerative disease clinical trials. In addition, she has pioneered the age-friendly initiatives at her health system and certified her Center of Excellence with the highest age-friendly recognition. She is part of the founding faculty for the diversity, equity, and inclusion committee in Montefiore Neurology.
Zwerling is board certified in neurology as well as the subspecialty of neuromuscular medicine by the American Board of Psychiatry and Neurology. She is a member of the American Geriatrics Society and the American Academy of Neurology. Additionally, she has been named “2020 Health Care Hero” by the Westchester magazine, and was named one of the New York Super Doctors in The New York Times from 2016 to 2023. She has also been appointed to the Physician Leaders Program at Montefiore Health System.
THE COVID-19 PANDEMIC has forced us to look at the care of older adults through a new lens. Core geriatric issues such as weight loss, malnutrition, polypharmacy, sensory deficits, gait and balance problems, sleep dysfunction, chronic illnesses, safety, home care needs, behavioral symptoms, and caregiver stress were exacerbated over the past 3 years. Fallout from the pandemic now constitutes a growing public health concern and calls for a new clinical pathway—one that accounts for the intersection between culture, ethnicity, race, and aging.
The care gap is especially great in the diagnosis, treatment, and care of Hispanic, Black, and Asian populations, which already suffered disproportionately from Alzheimer disease and related dementias and were disproportionately affected by the pandemic. To reverse these trends, we must begin by addressing the factors that negatively affect patient engagement in care and the trust in medical providers.1
For years, our state-designated Montefiore Hudson Valley Center of Excellence for Alzheimer’s Disease (CEAD) has operated under a paradigm I coined the “5 C’s:” culturally competent collaborative care of the cognitively impaired. Recently, we have added 2 additional Cs—community and champions—to reduce service fragmentation and increase access to community-based support services and participation in clinical trials.
We have contracted with a nonprofit community-based organization (CBO) with more than 50 years of specialized experience in serving older adults in our community. The key element of the contract is a senior, masters-level social worker who is embedded in our clinic to help our patient-caregiver dyads facilitate and reinforce our comprehensive care plans, developed by our interdisciplinary time of physicians that includes neurologists, geriatricians, geriatric psychiatrists, and neuropsychologists. In addition to offering a broad range of services, this CBO maintains close relationships with other agencies in our service area, which assures warm hand-offs to recommended support services.
A significant focus of the social worker’s engagement with the dyad is caregiver stress, which is an underrecognized and undertreated health risk that can lead to poor outcomes for both caregivers and patients with dementia, including higher rates of morbidity and mortality.2 This is especially valid among Hispanic, Black, and Asian American dementia caregivers who tend to have health issues themselves, less outside help and formal service utilization, and greater rates of depression compared with White caregivers.3-5
Recognizing the barriers formed by the misalignment between the needs of our culturally rich patient population and the demands of established clinical trial design, the social worker highlights the importance of clinical trials with the dyad. We also have held community engagement studios6,7 to solicit ideas for potential recruitment strategies, the use of culturally relevant language to describe the study, and logistical recommendations to improve participation and retention among community members.8 This has been helpful in our early planning stages for trials.
To ensure the provision of culturally competent, collaborative care to older adults, we have incorporated the Institute for Healthcare Improvement’s Age-Friendly 4 M’s framework—what matters, medication, mentation, and mobility—in our clinical training. Use of the 4 M’s methodology focuses communication, decision-making, and treatment planning on what matters most for individuals with complex conditions. The process identifies the priorities and concerns of patients and their caregivers and family members and can help guide care planning and further conversations. Our CEAD was among the first clinical units to gain Age-Friendly certification. To extend the concept throughout the Montefiore Health System, we formed an age-friendly governance committee to identify champions across service lines and promote the full adoption of the 4 M’s.
Understanding the complex and culturally diverse ecosystem of the community we serve by ensuring our clinicians fully understand what is important to each patient and caregiver not only builds trust but also gives us insight into culturally relevant community referrals, best practices, and an inclusive approach to clinical trials.
1. Smedley BD, Stith AY, Nelson AR, eds. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. National Academies Press; 2003.
2. Zwerling JL, Cohen JA, Verghese J. Dementia and caregiver stress. Neurodegener Dis Manag. 2016;6(2):69-72. doi:10.2217/nmt-2015-0007
3. Rote SM, Angel JL, Moon H, Markides K. Caregiving across diverse populations: new evidence from the National Study of Caregiving and Hispanic EPESE. Innov Aging. 2019;3(2):igz033. doi:10.1093/geroni/igz033
4. Pinquart M, Sörensen S. Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist. 2005;45(1):90-106. doi:10.1093/geront/45.1.90
5. Dilworth-Anderson P, Moon H, Aranda MP. Dementia caregiving research: expanding and reframing the lens of diversity, inclusivity, and intersectionality. Gerontologist. 2020;60(5):797-805. doi:10.1093/geront/gnaa050
6. Yancey AK, Ortega AN, Kumanyika SK. Effective recruitment and retention of minority research participants. Annu Rev Public Health. 2006;27:1-28. doi:10.1146/annurev.publhealth.27.021405.102113
7. Johnson DA, Joosten YA, Wilkins CH, Shibao CA. Case study: community engagement and clinical trial success: outreach to African American women. Clin Transl Sci. 2015;8(4):388-390. doi:10.1111/cts.12264
8. Stock MR, Ceïde ME, Lounsbury DW, Zwerling J. Utilizing community engagement studios to inform clinical trial design at a Center of Excellence for Alzheimer’s Disease. J Clin Transl Sci. 2022;6(1):e73. doi:10.1017/cts.2022.388