Global cases of Alzheimer’s disease (AD) are expected to triple by 2050, according to a recent study presented at the Alzheimer’s Association International Conference. African American and Hispanic American communities are disproportionately affected by the disease, with African Americans having two to three times more instances and Hispanic Americans having 1.5 times more instances of the disease. Affordability, communication issues, transportation barriers, discrimination, and lack of access to quality health care services are some of the many obstacles to equitable care in brain health.
Early intervention improves outcomes
For anyone facing cognitive issues, the idea of obtaining an AD diagnosis is understandably terrifying. However, early screening and diagnosis of neurological conditions such as AD and dementia can provide a demonstrable improvement in the quality of life of patients and families. Early intervention may enhance access to medications and clinical trials, and support resources to address social and emotional issues stemming from AD to bolster the health and well-being of patients and caregivers. Research has identified several medications that may delay AD progression.
The Lancet Commission on Dementia identified 12 potentially modifiable risk factors for dementia prevention. These include smoking, high blood pressure, inactivity, lack of social interaction, traumatic brain injury, air pollution, and others. The study highlighted that modifying these risk factors could potentially prevent or delay up to 40% of dementias.
The researchers further noted that “many risk factors cluster around inequalities, which occur particularly in Black, Asian, and minority ethnic groups and other vulnerable populations. Tackling these factors will involve not only health promotion but also societal action to improve the circumstances in which people live their lives.”
Supporting early intervention
PlatformQ Health recently produced free continuing medical education programs that brought together leading researchers working to address these complex issues. Dr. Goldie Smith Byrd. Director of the Maya Angelou Center for Health Equity and Professor of Social Sciences and Health Policy at Wake Forest University School of Medicine, noted that more people with AD are seen in emergency departments for other issues, so making emergency room staff aware of brain health resources to screen and support patients is a crucial step.
“Many older Americans are not aware that they have signs of the disease, and an estimated 40-80% may go undiagnosed until later stages,” says Dr. Jessica Zwerling, Director of the Montefiore-Einstein Hudson Valley Center of Excellence for Alzheimer’s Disease and Professor of Neurology at the Albert Einstein College of Medicine. “Increasing awareness of screening tools improves outcomes and helps identify patients at risk when the burden of disease is lower. We need to empower patients while their capacities are retained. In addition, there are new disease-modifying therapies available to support patients.”
Basic interventions such as reevaluating medications and home environments periodically are also needed to ensure patients aren’t at risk of falls, are receiving adequate nutrition, and are taking their medications as prescribed. “If a patient comes in and says their blood pressure medication isn’t working, for example, we need to help understand whether it’s the medication itself or whether it could be a health literacy or cognitive issue.”
Addressing brain health disparities in diverse populations
Place of residence can be a barrier to care and screenings. Many patients lack access to academic centers of excellence where they could receive a higher level of care as well as clinical trial opportunities. People who live in rural areas as well as older adults are often left out of clinical trials.
Broader outreach within communities is needed to reach people where they are. “It’s essential for clinicians to understand the different cultural experiences that diverse groups have on a day-to-day basis, and we need to train the next generation of clinicians to understand these racial and cultural differences,” says Dr. Byrd.
One wonderful example of a successful health equity initiative was launched by the Wake Forest Maya Angelou Center for Health Equity. The organization is working with a network of 100 congregations and health ministries to hold town hall meetings at local churches. “Faith is a powerful aspect of life for African-American and other diverse populations,” says Dr. Byrd. “The impact of community work is extraordinary. People participate in the work and tell other people. That builds instant credibility.”
“We need to be mindful to engage people at their senior centers, faith-based organizations, and other places in the community to find out what are the drivers and barriers to optimal health, says Dr. Zwerling. “Start early, not when the diagnosis is made but preventatively by embracing the community and enable/teach patients to manage and understand their chronic illness. After that we can work to bring patients and their families to research opportunities.”
Addressing sensitive subjects
Stigma can be a major concern for individuals and families suffering from cognitive decline, which may be a barrier when it comes to participating in screenings. “When I begin a discussion about cognitive issues, I want it to be person centered,” explains Dr. Zwerling. “Often, the way I start conversations is by asking a patient what they hope to be able to do in the next 10 years. I gain an understanding of what is important to my patient-caregiver dyads in devising a care plan. And then we work our way back to what are the health-promoting steps and medical care we can provide to keep their brain healthy”.
Supporting frail patients
Decreased strength, mobility, and functions are hallmarks of diseases like AD, yet these symptoms often lead to exclusion of patients from clinical trial opportunities that could potentially improve their quality of life. “This means those who need care most are often left behind,” says Zwerling. “Wherever possible we need to offer home- and community-based trial opportunities. While that is resource heavy to do, this is an important way to increase access.”
Dr. Zwerling has also demonstrated in her work that engaging social workers, community agencies, and other allied professionals can make a difference. As part of the Montefiore-Einstein Hudson Valley Center of Excellence in Alzheimer’s Disease (CEAD), her team collaborated with a community-based organization to create community engagement studios to involve area stakeholders in clinical trial design.
Building trust with individuals at risk
Many researchers are working proactively to help address mistrust of the medical community, which has been a long-standing barrier to equitable care. This mistrust often means diverse populations aren’t adequately represented in clinical trials that could benefit them. Trial recruitment needs to be culturally sensitive and done in collaboration among research centers and community organizations in order to achieve credible representation.
“Trust is complex,” says Dr. Byrd. “As we continue to engage diverse populations, education is going to be more and more important, particularly when you consider atrocities in research and medicine in general.”
Experts such as Dr. Byrd highlight the importance of engaging communities at each step of the process, and asking for input on whether you’re doing the right thing.
Building trust involves not only asking the right questions but also keeping a presence in the community. “Once research is over, ask yourself: Have you maintained a connection where your patients are? Are you still in touch with participants and families? We have many ways to keep people updated on how research is going, and to continue to learn about their ongoing needs.”
Dr. Angela Allen, Banner Health Clinical Research Program Director, concurs: “Don’t just walk into church and implement something,” she says. “Sustainability of communication is so important. As researchers we often put research programs in place but letting people know how those are going is a beneficial way to stay connected.”
Person-centered care is key to building community relationships. “Overcoming barriers is not a one-size-fits-all endeavor,” says Dr. Allen. “As clinicians and researchers, we need to come to communities honestly and earnestly.”
Accessing culturally-appropriate awareness and screening tools
Traditional screening and assessment tools for those with cognitive concerns
were often not designed with diverse populations in mind, and may not be language or culturally sensitive. To address these shortfalls, Dr. Allen shared many culturally appropriate brain health resources, including:
- The National Alzheimer’s Project Act (NAPA) website focuses on national efforts to help change the trajectory of AD and related dementias by expanding and coordinating programs to improve health outcomes, accelerate research, decrease health disparities, and reduce the financial burden on families. One program the group initiated is a new clinical trial participant strategy document developed based on focus groups in diverse populations.
- The CDC’s Alzheimer’s Disease and Healthy Aging portal contains screening modules as well as links to public health interventions.
- The Healthy Brain Initiative Roadmap supports clinicians in early detection and diagnosis tools, including the 10 warning signs of AD.
- Balm of Gilead, Inc. and the Centers for Disease Control developed the Brain Health website to promote awareness of cognitive issues among African-Americans through networks of houses of worship, faith-based organizations, and partnerships with communities and individuals committed to their cause. The organizations are bringing data together from patients and caregivers in order to expand areas of care and research where it’s needed most.
A success story
Assistant Professor of Geriatric Psychiatry and Geriatric Medicine at the Albert Einstein College of Medicine/Montefiore Medical Center, the Assistant Program Director of the Geriatric Psychiatry Fellowship and Associate Director of Psychiatry at the Center for the Aging Brain Mirnova Ceide, MD, MSc led a team in the Bronx to work with other academic partners to facilitate inclusion in addressing both mood symptoms and cognitive impairment.
They have utilized problem-solving therapies to address everyday problems faced by older adults and their caregivers to reduce stress and depression. Dr. Ceide and her team piloted a problem-based psychotherapy program for their own community where roughly half of the population are primary Spanish speakers and one quarter are very frail. “English language fluency is a requirement in many trials, which shrinks recruitment,” she says. “Many cognitive assessments are normed in English and not other languages.”
To address these issues, the team:
- Produced culturally- and linguistically appropriate screening tools
- Curated more appropriate inclusion/exclusion recommendations for clinical trials
- Offered interventions in multiple languages
- Recruited ethnically-diverse and bilingual staff for every part of their research team
“We have to be purposeful in how we recruit research staff,” cautions Dr. Allen. “For example, we have a very diverse Hispanic population, and having staff with this knowledge takes more resources but it’s very valuable for reducing disparities in care.”
Another notable program is one developed at Cornell University, which features home interventions to support patients within their own environment. Based on these visits, clinicians can work with patients and families to look at adapting the home ecosystem. This has been shown to reduce disability and depression.