By: Monica Lefton, Communications Manager
Research is still being conducted to understand how the brain ages and the risk factors associated with Alzheimer’s disease. The study of biological sex differences in Alzheimer’s research is more recent — but the urgency of funding such research cannot be overstated. As the U.S. population ages, the burden of Alzheimer’s is expected to rise; by 2050 the number of adults over 65 with Alzheimer’s in the United States is expected to rise to nearly 13 million, up from more than 6 million today.
On August 23, 2022, the Society for Women’s Health Research (SWHR) convened an interdisciplinary group of policy experts, researchers, clinicians, and patient advocates for a one-day roundtable meeting to discuss policy needs and opportunities for women living with Alzheimer’s and for those living as Alzheimer’s caregivers. The roundtable discussion highlighted needs and opportunities for improved disease education, research and care equity, and policy actions to improve Alzheimer’s outcomes for women across the lifespan, both as patients and caregivers.
Who has Alzheimer’s Disease?
More than two-thirds of Americans living with Alzheimer’s are women. “We don’t completely understand nor can we clearly say why women are always at greater risk [for AD], but we know there are more women living with this disease,” said Heather Snyder, Ph.D., Vice President of Medical and Scientific Relations at the Alzheimer’s Association.
According to SWHR’s Women’s Health Equity Initiative, of the women living with AD, African-Americans are two times more likely and Hispanics one and a half times more likely to be clinically diagnosed with Alzheimer’s or related dementias compared to non-Hispanic white populations. Transgender adults are also reportedly nearly twice as likely to report cognitive decline Snyder added, though she said additional research into this population is needed.
When it comes to answering why more women present with Alzheimer’s, research points to many possible factors, including brain structure and verbal recall, genetics and sex specific genes, metabolism, hormone changes over the lifespan (including pregnancy outcomes), differences in the immune system, and changes in cardiovascular health. However, even when women are included in aging research, much of the current research in Alzheimer’s is done in highly educated, white populations. To better inform population outcomes, this research must expand to Black, brown, and Hispanic groups living with the disease.
There are also critical socioeconomic and lifestyle factors that are worth exploring when it comes to AD. For example, the World Health Organization estimates that 30-55% of health outcomes result from social determinants of health, and research shows racism and trauma may make the brain more vulnerable to Alzheimer’s and related dementias, said Pamela Price, RN, Deputy Director at The Balm in Gilead. She noted that stakeholders must move from an “either/or” to a “both/and” format when studying the layered effects of Alzheimer’s risks.
The Alzheimer’s Association and the National Institute on Aging (NIA), an agency of the U.S. National Institutes of Health (NIH), jointly issued four updated criteria and guidelines to diagnose Alzheimer’s disease; however, there are currently no federal screening guidelines for Alzheimer’s based on age or other risk factors. A doctor may refer an individual for additional cognitive testing if symptoms persist, but older adults could be better served by more formalized screening guidelines or by using evidence-based screening tools – and with such formalized screening a more accurate picture of who is affected by Alzheimer’s may arise.
Caring for Those with Alzheimer’s Disease
Women disproportionately serve as unpaid Alzheimer’s and dementia caregivers, which can have ramifications on their work and home life, productivity, and physical and mental health. In one report by the Alzheimer’s Association and the National Alliance for Caregiving, 50% of female Alzheimer’s caregivers said caregiving is physically stressful, 62% said it is emotionally stressful, 20% reported switching from full-time work to part-time, and 19% reported quitting work as a result of caregiving.
Strategies for Alzheimer’s or dementia management can differ greatly between individuals (i.e., healthy diet, regular exercise, brain engagement practices in addition to prescription medications), so it’s important that families and their physicians have information about the different treatments, therapy options, and culturally relevant tools available.
Access to wider disease education is fundamental to the successful uptake of management and treatment strategies. “Education means arming our patients and families with knowledge so that they can make educated decisions regarding their care. It’s all about supporting them in their journey and their choice about what care they want,” Anna Burke, MD, Karsten Solheim Chair for Dementia at the Barrow Neurological Institute said.
This may also mean making sure communities are aware of ongoing Alzheimer’s trials, research, and legislation — and equipping them with the means to participate if they so choose. “We need to let people know that policies are informed by them and for them,” Nichole Goble, Director of Community Initiatives at the Caregiver Action Network added.
Having the right teams trained and equipped will also ensure effective care management. Education for providers should start with creating a dementia-capable system, Dr. Burke said. Most dementia care occurs in the primary care setting, as formal dementia specialists are only able to cover 10% of the U.S. population, so primary care physicians require fuller education around Alzheimer’s and dementia identification. Schools and programs should also set goals to train more young people, as well as more women and underrepresented minority physicians in geriatric medicine. Some Working Group members noted it is not uncommon to see physicians dismiss signs of dementia as normal age-related changes or ‘menopause fog’ or to avoid diagnosing Alzheimer’s altogether.
Dr. Burke commented on how physicians may avoid making an Alzheimer’s or dementia diagnosis because they may not feel equipped to help the patient after providing that diagnosis: “We need to incentivize physicians to diagnose individuals with early dementia [if signs are present] or to engage them in clinical trials. Right now, they’re scared of opening up ‘Pandora’s Box’ with these patients because they don’t have the resources to manage what care entails, so it’s on all of us to make the resources available.”
Better geriatric training and funding could help eliminate the uncertainty physicians may feel when their patient is facing an Alzheimer’s or dementia diagnosis and, as a result, could help improve Alzheimer’s disease outcomes.
Reimagining Research and Alzheimer’s Disease Clinical Trials
Alzheimer’s disproportionately affects women across the United States, and emerging evidence continues to suggest that relative to all men and non-Hispanic white women aged 65 and older, African-American and Hispanic women have the first and second highest prevalence of Alzheimer’s or related dementias, respectively. Improving Alzheimer’s research will, in part, require a systems-level change that addresses the drivers of health care research inequalities, embraces community-driven solutions, and stops asking “how do certain populations get to us?,” but instead asks “how do we get to these populations?”.
The Equity in Neuroscience and Alzheimer’s Clinical Trials Act (the ENACT Act) (H.R.3085, S.1548) introduced in May 2021, aims to increase the participation of underrepresented populations in research and clinical trials for Alzheimer’s and related dementias conducted by the NIA. Of note, the ENACT Act would provide funding to expand Alzheimer’s centers in areas with higher concentrations of underrepresented populations, including Historically Black Colleges and Universities (HBCUs), Hispanic-Serving Institutions, Tribal Colleges and Universities (TCUs), and to use community-based engagement strategies in research outreach.
Other tangible changes for improving clinical trial diversity mentioned by the Working Group include moving some study sites from metropolitan health and academic centers to community-centered locations (part of a fundamental reimaging of where medicine can and should take place); engaging more Black and Hispanic principal investigators; enhancing physician education on when, where, and which trials are available; sharing data back with communities as a reflection of their agency in the process; improving research messaging to minority communities; and building ongoing relationships with communities that are centered on learning that community’s priorities, needs, and interests over time — not just when the research is being conducted.
High-touch interaction is crucial, Price noted: “These communities need to see you, and touch and feel your spirit and energy” to build trust; it can’t just be a flier or a webinar posting, she added.
Dr. Burke’s team at Barrow Neurological Institute has worked to meet patient and participant populations in Arizona communities by implementing more virtual clinical trials options. Other Alzheimer’s research groups have begun hosting clinical trial bus programs that more easily engage communities with research. Price’s team at The Balm in Gilead committed to training members from the community to serve as research liaisons and has since hired, trained, and currently supports state managers, coordinators, lifestyle coaches, and health coordinators across six states to address health issues in rural and minority communities in the south.
“It’s costly but worth it,” she said.
Primary care physicians and dementia specialists should also be trained on the importance of trials and have an understanding of what’s available in their community and for their patients. It is the role of physicians to share with their patients the benefits of engaging in research, not the responsibility of patients to understand why trials are important, Working Group members agreed.
With this work underway, Alzheimer’s studies can better observe key topics currently lacking in research, such as the contribution of biological factors and sex as a biological variable in Alzheimer’s disease risk, potential disease mechanisms, disease prevalence and risk in the LGBTQ+ community, the role of structural contributors to health like racism and trauma, risk indicators in women of childbearing age, and outcomes in subpopulations of women. Research must also include caregivers — studying the symptoms they are and are not prepared for, the psycho-emotional health element of caregiving, and the support systems they find most helpful or are most in need of. “Studies are often missing the caregiver burden piece,” said Michael Ward, MS, Vice President of Public Policy and Government Affairs at the Alliance for Aging Research. Goble agreed, adding that more diverse trial populations, in patient and caregiver studies, will support validation and understanding of how biological sex and gender considerations contribute to disease-related brain changes.
Improving Policy to Improve Alzheimer’s Disease Outcomes
As the population ages, Alzheimer’s is not an issue that can afford to be overlooked. While current policies exist or are being explored to improve care, advance research, and increase funding (in addition to the ENACT Act, the Comprehensive Care for Alzheimer’s Act H.R.2517, S.1125, NAPA Reauthorization Act H.R.7775, S.4203, Alzheimer’s Accountability and Investment Act H.R.7773, S.4202, and Alzheimer’s Caregiver Support Act H.R.1474, S.56 were all mentioned during the discussion), there is still more that can be demanded from policymakers. Future policies could benefit from including more specific language calling for gender-specific research funds for dementia; requiring that clinical trial recruitment meet set gender enrollment goals; expanding Medicare home care and home health aid support; increasing funding for the eldercare workforce (specifically the Geriatrics Workforce Enhancement Program); requiring NIA to regularly report on dementia research funding; or creating a cognitive screening protocol.
Working Group members repeatedly called to improve caregiver support policies as well —from enhancing telehealth coverage and creating a technology solution for dementia caregivers to providing subsidies for caregiver respite, adult day care services, and LGBTQ+-inclusive caregivers and hospice.
SWHR and many of the organizations represented by Working Group members continue their commitment to supporting legislation that increases Alzheimer’s research and treatment funding and diversifies our understanding of the disease, across sex, gender, race, ethnicity, and geography.
As the country’s population ages, more and more people across the United States will be impacted by Alzheimer’s or a related dementia. However, through the implementation of prevention strategies, coverage and access to treatments, research, and caregiver-focused policies — and in coordination with a health care ecosystem of invested providers, policymakers, patients, and caregivers — better outcomes and livelihoods for individuals affected by Alzheimer’s disease is possible. SWHR will continue work to build awareness, advance research, and improve science-based clinical and policy guidelines to improve the well-being for women living with Alzheimer’s disease or serving as Alzheimer’s disease caregivers.
SWHR’s Alzheimer’s Disease Program is supported by educational sponsorships from Eisai and Eli Lilly & Company. SWHR maintains editorial control and independence over educational content.