AGE-u-cate Training Institute Blog

As the prevalence of Alzheimer’s disease and other forms of dementia continues to rise, communities across the United States are facing a critical issue: a shortage of neurologists and geriatricians, often referred to as neurology deserts. These areas, typically rural or underserved, lack access to specialized care that is essential for the early diagnosis, treatment, and management of neurological conditions. For individuals living with dementia and their care partners, the implications are profound.

Let's explore what neurology deserts are, how they impact dementia care, and what communities can do to address these challenges. We’ll also highlight the critical role of awareness, education, and programs like Dementia Live® in creating healthier, dementia-capable communities.

What Is a Neurology Desert?

A neurology desert is a geographic area with insufficient access to neurologists and other specialized providers such as geriatricians. According to the American Academy of Neurology (AAN), the United States has only about 19,000 practicing neurologists, and demand is expected to increase by 20% over the next decade.

Alarming Statistics on Neurology Shortages:

• In 2023, 40% of U.S. counties had no practicing neurologist.
• Rural areas are disproportionately affected, with fewer than 5 neurologists per 100,000 residents in some states.
• The number of geriatricians, essential for addressing aging-related conditions, is also critically low. By 2050, the U.S. will need approximately 33,000 geriatricians but is on track to have fewer than half that number.

For people living with Alzheimer’s disease and dementia, these shortages mean delayed diagnoses, fragmented care, and increased reliance on emergency rooms for acute needs.

Dementia in Rural Communities

The impact of neurology deserts is especially acute in rural communities, where dementia diagnoses are rising. The Centers for Disease Control and Prevention (CDC) reports that:

• Rural populations experience higher rates of dementia due to aging demographics and greater prevalence of risk factors like hypertension and diabetes.
• Access to specialized dementia care is often limited, requiring families to travel long distances for appointments or forego care altogether.

This lack of access creates a cascade of challenges: delayed interventions, increased caregiver burden, and poorer outcomes for individuals living with dementia.

Addressing Neurology Deserts

To combat the growing challenge of neurology deserts, communities and organizations are adopting innovative solutions, including:

1. Telemedicine Expansion

Telemedicine is bridging the gap for rural areas, allowing patients to access neurologists and geriatricians remotely. Programs like Project ECHO (Extension for Community Healthcare Outcomes) train primary care providers in rural areas to manage complex conditions like dementia.

2. Community-Based Support

Community based organizations such as Area Agencies on Aging, are stepping up to provide dementia education and resources.  These efforts help families navigate caregiving challenges and access available support.

3. Education and Workforce Development

Training programs are being implemented to increase the number of primary care providers equipped to diagnose and manage dementia. Geriatric training initiatives aim to attract more healthcare workers to underserved areas.  Training for In-home support workers and community health workers are also boosting efforts to allow people living with dementia to remain in their homes, reducing the costly burden of nursing home care.  

4. Community Partnerships

Collaborations among community and regional stakeholders are moving the needle with many innovative efforts to bridge the private and public sectors that include health plans, community-based organizations, aging service providers, and others that have a vested interest in addressing the unique needs of their communities.  This village concept will continue to see advancement in the coming years as access to technology grows among rural and underserved areas.   

Building Dementia-Friendly Rural Communities

In the face of these challenges, building dementia-friendly and dementia-capable rural communities is more important than ever. Here’s how these efforts benefit residents:

1. Raising Awareness

Public education reduces stigma and promotes early diagnosis, ensuring that individuals receive care and support sooner. Programs like Dementia Live®, developed by AGE-u-cate Training Institute, are instrumental in creating empathy and understanding within communities, empowering powerful face to face conversations, building trust and relationships that can lead to better outcomes due to early caregiver intervention. 

2. Expanding Education and Resources

Equipping care partners with tools and knowledge improves quality of life for both caregivers and those living with dementia. Community workshops, memory cafes, care partner support groups, and skill-building programs help reduce caregiver stress and burnout.

3. Strengthening Healthcare Systems

Training primary care providers in dementia care ensures that rural residents have access to knowledgeable healthcare professionals, even in the absence of specialists.

4. Reducing Healthcare Costs

Supporting individuals to age in place, rather than relying on institutional care, reduces costly emergency room visits and hospital readmissions.

AGE-u-cate Training Institute and Dementia Live

AGE-u-cate Training Institute is at the forefront of addressing the challenges posed by neurology deserts. Through partnerships with community organizations, including Area Agencies on Aging, Dementia Friendly Initiatives, Community-based organizations and others, AGE-u-cate is delivering impactful education and training programs to rural and underserved areas.

Dementia Live®, an immersive experience that helps participants understand the sensory and cognitive challenges faced by people living with dementia, is transforming how communities approach dementia awareness, education and skill building.  By fostering empathy and awareness, Dementia Live empowers care partners, healthcare providers, and community members to create supportive environments.  The impact of in-person conversations leads to higher outcomes in the important area of early care partner intervention, thus reducing caregiver burnout and empowering care partners with resources, support and mentorship. 

A Call to Action

The growing prevalence of neurology deserts demands urgent attention. By expanding awareness, increasing education, and investing in community-based solutions, we can create a future where individuals living with dementia—and their care partners—receive the support they deserve.

Programs like Dementia Live® are paving the way for more inclusive, understanding, and capable communities. If your organization or community is interested in becoming part of the solution, contact AGE-u-cate Training Institute to learn more about our programs and collaborations. Together, we can build a world where no one is left behind, regardless of geography.

For inquiries about our work with Dementia Friendly initiatives, Area Agencies on Aging, the recently published Rural Age Friendly Compendium of Best Practices or general inquiries about the Dementia Live program, please contact us today. 

Dementia, a debilitating condition characterized by a decline in memory, language, problem-solving, and other cognitive skills, poses significant challenges not only to patients and their families but also to health care systems globally. As the population ages, the prevalence of dementia is increasing, leading to escalating health care costs that burden both individuals and health care plans. Despite ongoing efforts, health care plans continue to struggle in effectively reducing the high costs associated with dementia care.

The Rising Prevalence and Economic Burden

Dementia affects millions of people worldwide, with Alzheimer's disease being the most common form. The World Health Organization (WHO) estimates that around 55 million people are living with dementia, and this number is projected to reach 78 million by 2030 and 139 million by 2050. In the United States alone, the Alzheimer's Association reported that dementia-related costs reached $355 billion in 2021, a figure expected to soar to over $1 trillion by 2050 without significant interventions. According to the Centers for Disease Control and Prevention (CDC), about 5.8 million Americans were living with Alzheimer's disease in 2020, and this number is expected to nearly triple by 2060.

Complexities of Dementia Care

Dementia care is inherently complex and multifaceted. It encompasses medical treatment, long-term care, and supportive services. Patients often require round-the-clock supervision, assistance with daily activities, and specialized care that addresses their unique needs. This complexity drives up costs, making it challenging for health care plans to manage expenses effectively. A study published in the Journal of the American Geriatrics Society found that the average total cost of care for a person with dementia is approximately $287,000 over a five-year period, with long-term care being the most significant expense.

Barriers to Cost Reduction

Several factors contribute to the difficulty health care plans face in reducing dementia care costs:

1. Early Diagnosis and Intervention: Early diagnosis of dementia is crucial for effective management, yet it remains a significant challenge. The Alzheimer's Association estimates that only about 50% of people with dementia are diagnosed at an early stage. Health care plans struggle to implement widespread screening and early intervention programs due to limited resources and varying access to diagnostic tools.

2. Lack of Standardized Care: There is no one-size-fits-all approach to dementia care. Each patient's progression and needs are unique, requiring personalized care plans. This lack of standardization makes it difficult for health care plans to implement cost-effective, uniform strategies. Research from the RAND Corporation indicates that standardizing care protocols could potentially save billions in health care costs annually.

3. Caregiver Support: Informal caregivers, often family members, provide the majority of dementia care. However, they receive little support and training, leading to burnout and increased health care utilization. A study in Health Affairs highlighted that caregiver burnout can increase health care costs by 23% due to higher use of emergency services and hospitalizations. Health care plans are challenged to provide adequate resources and respite care for these caregivers to prevent further costs.

4. Pharmaceutical Limitations: While there are medications available to manage dementia symptoms, they are not curative. The development of disease-modifying therapies has been slow and expensive. Health care plans face the challenge of balancing the cost of these medications with their limited efficacy. According to a report by the Pharmaceutical Research and Manufacturers of America (PhRMA), the failure rate for Alzheimer's drugs in clinical trials is 99.6%, reflecting the high costs and challenges in developing effective treatments.

5. Long-Term Care Costs: Long-term care facilities and home-based care options are expensive. As dementia progresses, the need for these services increases, placing a significant financial burden on health care plans. Additionally, the quality and availability of long-term care vary widely, complicating efforts to standardize costs. The Genworth Cost of Care Survey found that the median annual cost of a private room in a nursing home was $105,850 in 2021.

Strategies for Mitigating Costs

Despite these challenges, there are strategies that health care plans can adopt to mitigate the high costs of dementia care:

1. Promoting Preventive Measures: Investing in public health campaigns that promote brain health and preventive measures, such as cardiovascular health and cognitive training, can help reduce the incidence of dementia. Research from The Lancet Commission on Dementia Prevention, Intervention, and Care suggests that addressing modifiable risk factors could prevent or delay up to 40% of dementia cases.

2. Enhancing Early Detection: Implementing widespread screening programs and training primary care providers to recognize early signs of dementia can facilitate earlier diagnosis and intervention, potentially slowing disease progression. The CDC's Healthy Brain Initiative emphasizes the importance of early detection in improving outcomes and reducing costs.

3. Supporting Caregivers: Providing resources, education, and respite care for informal caregivers can reduce their burden and prevent burnout, ultimately lowering health care utilization. The Family Caregiver Alliance reports that supporting caregivers with training and respite care can significantly reduce health care costs and improve patient outcomes.

4. Expanding Community-Based Services: Developing and funding community-based services, such as adult day care programs and in-home support, can offer more affordable alternatives to long-term care facilities. The AARP Public Policy Institute found that expanding home and community-based services could save Medicaid an estimated $9 billion annually.

5. Investing in Research: Continued investment in research for disease-modifying therapies and better understanding of dementia can lead to more effective treatments and potentially curative solutions, ultimately reducing long-term costs. According to the National Institutes of Health (NIH), increasing funding for Alzheimer's and dementia research has led to significant advances, but sustained investment is crucial for future breakthroughs.

The challenges in decreasing the high costs of dementia care are multifaceted and complex. Health care plans face significant obstacles, from early diagnosis to long-term care. However, through preventive measures, early detection, caregiver support, community-based services, and investment in research, there is hope for more effective cost management and improved care for dementia patients. Addressing these challenges requires a collaborative effort from health care providers, policymakers, researchers, and communities to ensure a sustainable and compassionate approach to dementia care.

To learn more about how AGE-u-cate Training Institute is collaborating with health care plans, payors and health systems to address community-wide dementia awareness, education, and training, contact us today.