By Madelyn Adams, MPA, SWHR Public Policy and Advocacy Manager
Alzheimer’s disease and other dementias represent one of the most pressing global health challenges today. The number of individuals living with Alzheimer’s disease could increase from 6.9 million to nearly 14 million by 2060. This alarming trend will have profound implications not only for families but also for the health care system as a whole, highlighting the urgency for more effective diagnosis, treatment, and care strategies. Despite significant advancements in early detection and therapeutic options, numerous barriers remain in Alzheimer’s disease care, leaving many individuals to navigate a fragmented and challenging system.
Understanding the critical intersection between Alzheimer’s disease and women’s health, the Society for Women’s Health Research (SWHR) recently convened a roundtable of interdisciplinary researchers, clinicians, and advocates to discuss policy approaches for addressing barriers and disparities in Alzheimer’s disease screening, diagnostics, and care. This discussion expanded on SWHR’s decades-long work in brain health, including a 2022 roundtable that focused specifically on policy solutions for improving Alzheimer’s disease outcomes in women. The December 2024 roundtable identified key strategies to accelerate progress and develop a more equitable, compassionate, accessible, and effective system for Alzheimer’s disease care.
Sex and Gender Differences in Alzheimer’s Disease
Foundational to the recent roundtable was discussion on the need to address sex differences in Alzheimer’s disease. Maheen Mausoof Adamson, PhD, MHL, Director of Research in Women’s Operational Military Exposure Network Center of Excellence (WOMEN) Center of Excellence at the VA Palo Alto Healthcare System and Clinical Professor of Neurosurgery at Stanford University School of Medicine, emphasized that the current clinical research landscape needs to further consider how neurological diseases, including Alzheimer’s disease, manifest differently in women compared to men. Evidence gaps in understanding Alzheimer’s disease causation and prognosis in women critically delay and impede quality of diagnosis and treatment. Women are disproportionately and disparately impacted by neurological conditions, such as narcolepsy and migraine disease, and there are similar patterns in Alzheimer’s disease. For example, women diagnosed with mild cognitive impairment or Alzheimer’s disease generally experience a faster rate of cognitive and functional decline compared to men. Such disparities beg the question of how women may need tailored care options, such as more sessions with clinical providers than what is typically covered by Medicare or private insurance.
Disparities in research and clinical practice underscore the urgent need for more nuanced and inclusive approaches to studying Alzheimer’s disease and other forms of dementia. Gender differences in disease manifestation are not limited to Alzheimer’s disease—they are a concern across other health conditions, yet they remain underexplored in many clinical and academic settings. Incorporating sex and gender into Alzheimer’s disease research is essential for creating more equitable, accurate, effective, and equitable health care. In practice, this could mean increasing the representation of women in clinical trials and conducting more research on the hormonal, genetic, and environmental factors that influence Alzheimer’s disease in women, along with developing clinical and social care guidelines that address sex and gender differences in disease diagnosis, manifestation, and care.
Fostering Empathetic and Comprehensive Care
Workforce challenges – in both primary and specialty care settings – are a critical obstacle in improving Alzheimer’s disease care, particularly in primary care. Deanna Willis, MD, Professor of Family Medicine and Vice Chair of Research at Indiana University School of Medicine, emphasized that while there is an increasing demand for Alzheimer’s disease-related testing and diagnosis, providers may not be equipped to handle the volume of patients requiring care. Existing health care systems are fragmented and lack the processes, infrastructure, and reimbursement structures necessary for providing patients with the holistic support necessary for quality care, especially for those with co-occurring conditions.
Team-based clinical care models can move the needle towards more coordinated care; however, this cannot be achieved without the requisite policy solutions that support team-based models, which would increase workforce availability and streamline care systems. Policymakers should be considerate of pathways to creating care models that improve access to care while ensuring quality. For example, enhanced triage processes can help ensure coordinated patient access to the appropriate medical specialists.
Improving Access to Screening and Diagnostic Tools
Emerging technologies, such as blood biomarker testing and amyloid-PET scans, also hold promise in transforming the diagnosis and treatment of Alzheimer’s disease. However, the widespread adoption of these services has significant barriers, particularly in reimbursement and accessibility, as securing insurance coverage for certain diagnostic tools remains a major challenge. Insurance providers are often reluctant to cover advanced technologies due to high costs and uncertainty about the clinical utility of certain tests, leading patients to deal with out-of-pocket expenses that can be unaffordable, especially for those who are uninsured or underinsured.
Even when insurance coverage is available, navigating the complex reimbursement landscape is difficult. Clinicians may hesitate to recommend or utilize emerging diagnostic tools without the assurance of reimbursement, further complicating patient access to timely and accurate diagnoses. Some providers also may not be fully equipped to use new diagnostic technologies nor aware of the latest advancements. This lack of uptake among providers means that even when technologies are available, they may not be incorporated widely into routine clinical practice, leaving many patients without access to the most appropriate and beneficial diagnostic and treatment options.
Patient access to emerging technologies is also limited by geographic and systemic barriers. Rural and medically underserved communities, where health resources are already stretched thin, may face even greater challenges in accessing the latest diagnostic tools and specialized care. According to one study on the geographic differences in dementia care found disparities in terms of higher mortality rates, less visits to physicians, more hospitalizations, and reduced use of home care services for rural individuals with dementia compared to their urban counterparts. For these patients, distance to specialized centers, lack of telehealth options, and inadequate infrastructure for advanced diagnostics and treatments create substantial barriers to equitable and appropriate care. Initiatives that expand access to health care in rural and underserved areas—such as improved telemedicine platforms and public health partnerships—could help mitigate some of these disparate barriers to care.
Elevating Brain Health and Reducing Stigma
Beyond treating Alzheimer’s disease itself, roundtable participants spoke about the need to embrace brain health promotion more broadly. Encouraging life course conversations about cognitive health as part of overall wellness and aging can transform how people across the United States approach Alzheimer’s disease risk reduction and early intervention.
Sheena Aurora, MD, Vice President of Neurology at C2N Diagnostics and former member of the SWHR Migraine Working Group, noted the importance of initiating brain health conversations earlier in life, especially for women who may experience cognitive changes tied to various life stages, such as pregnancy, postpartum, perimenopause, and menopause. These cognitive changes, often dismissed as “subjective” or anecdotal complaints, can serve as early indicators of cognitive decline, and clinicians can prevent issues down the road by beginning conversations around brain health earlier Establishing an individual baseline for brain health early – for example, facilitating conversations in primary care settings or even in school-based health curricula – could help individuals understand their cognitive trajectories and take preventive actions to maintain brain health.
Improving collective understanding of brain health may also be a strategy for reducing stigma associated with declining cognitive function. For example, Lisa McGuire, PhD, Vice President of Strategic Alliances and Practice Innovation at the Gerontological Society of America, highlighted that fewer than half of those reporting memory decline seek care, according to CDC data.
Fear and stigma related to diagnosis—including concerns about loss of certain responsibilities such as driving privileges or financial decision-making—may cause individuals to delay expressing concerns about cognitive decline, making it difficult for clinical providers to intervene early. While such stigma requires social deconstruction, policy also play a role. For example, protections against discrimination and Genetic Information Nondiscrimination Act (GINA) laws, paired with provider and patient education, can help reduce stigma and ease patient concerns.
Supporting Caregivers
While supporting and empowering patients is crucial, it is equally important to recognize the critical role that caregivers play in the Alzheimer’s disease care ecosystem. Caregivers, who are often family members or close friends, are relied on to care for individuals as they age. Caregivers face the complex challenge of managing not only day-to-day needs of their loved ones, but also the emotional, financial, and physical toll of caregiving. Women are disproportionately represented in caregiving roles; more than 60% of unpaid Alzheimer’s and dementia caregivers are women, according to the Alzheimer’s Association.
Evidence shows that caregivers experience “psychosocial and physical health effects,” with impacts being more pronounced for women caregivers and caregivers from lower socioeconomic groups. While caregivers often feel their work is rewarding, the toll of caregiving can be compounded by the grief that may arise when caregivers witness the cognitive and functional decline of a loved one. This grief can linger and significantly affect the caregiver’s ability to function and maintain their own well-being.
In addition, many caregivers experience financial strain, with one survey from 2022 identifying financial worries as the second most common stressor for caregivers, after general “worry for the patient”. It is estimated that the average cost for care for patients with dementia is about $412,000, and 70% of those costs are shouldered by family caregivers. Furthermore, due to the demanding nature of Alzheimer’s disease care in particular, caregivers may need to adjust their work schedules. According to one 2018 report, 57% of Alzheimer’s caregivers surveyed reported taking time off or adjusting work hours to account for caregiving needs, 18% reduced their full-time work hours to part-time, and 16% had to take a leave of absence. In fact, 19% of women who are Alzheimer’s caregivers report having quit work to attend to their caregiving duties. Such work adjustments can result in lost wages and reduced earning potential over time, contributing to a cycle of financial instability for families living with Alzheimer’s disease.
The needs of caregivers cannot be overlooked in policy. More research is needed to understand the long-term effects of caregiving, such as the mental and physical toll or potential loss of income due to absenteeism. Policies can improve caregiver experiences by providing support mechanisms such as paid family leave, respite care programs, and caregiver support networks, all of which can help reduce the emotional and physical strain on caregivers. By investing in caregivers, policymakers can support a vital part of the U.S. workforce and improve the overall quality of care for individuals with Alzheimer’s disease.
A Meaningful Policy Approach
Ultimately, improving Alzheimer’s disease care will demand a strategy that includes comprehensive research on sex and gender differences, enhanced access to innovative technologies and care teams, expanded brain health education, and increased support for caregivers. This strategy must recognize the distinct sex and gender disparities at play in this disease, grounding policies in both medical evidence and the lived experiences of both patients and caregivers.
SWHR is grateful to roundtable participants for contributing their passion and expertise to this discussion. The Society remains committed to advancing research, raising awareness, and advocating for policies that improve care for individuals living with Alzheimer’s disease and their caregivers. As the population ages and the prevalence of Alzheimer’s disease continues to rise, the time to act is now.
Read more about how policymakers and advocates can address gaps, reduce stigma, and improve Alzheimer’s disease diagnosis, treatment, and care for women and support for caregivers in SWHR’s science call to action, Alzheimer’s disease policy agenda, and newest resource: the policy call to action.