Sia Lakshmi Sampson: Dr. Hill, thank you so much for the chance to interview you and learn from you! As a teenager committed to brain health and helping my community through art and service, I’ve been especially curious about dementia here in Maryland. After reading that my state has the highest prevalence of Alzheimer’s disease dementia in the country, I became more determined to contribute towards addressing the issue. So thank you again for this unique opportunity to speak with a leading expert in dementia research and care. With thousands of people in Maryland and millions around the world affected by this disease, I’m eager to understand your work and what you see on the horizon for the future of Alzheimer’s care and support.

In really simple terms, can you explain what dementia is and why it’s so important for communities to help address it?

Dr. Carl V. Hill: Dementia is an umbrella term describing cognitive decline serious enough to interfere with daily living. Alzheimer’s is a specific disease and the largest cause of dementia – accounting for 60 to 80% of all dementia. Many different types of dementia exist and many conditions cause it. Other common causes of dementia include vascular dementia, mixed dementia (more than one cause of dementia occurring simultaneously), Lewy body dementia, Parkinson’s disease and Huntington’s disease. Today, there are more than 7 million Americans living with Alzheimer’s and that number is expected to increase to nearly 13 million by 2050 unless new treatments are advanced and/or significant progress is made in reducing the prevalence of modifiable risk factors for dementia. Alzheimer’s has a significant impact on affected individuals, their families and the country as a whole. It’s critical that we change the current trajectory.

Sia: When did you first realize there were differences in how people experience or get care for dementia?

Dr. Hill: I first became interested in disparities in dementia and dementia care when I worked with NIH’s National Institute on Aging, as its Director of Special Populations. The NIA funded many projects that explored dementia disparities and how they relate to behavioral and social factors, geriatrics, gerontology, aging biology and neural factors. When I combined this work with my previous experience at NIH’s National Institute on Minority Health and Health Disparities, Morehouse School of Medicine and the University of Michigan, it became a real interest to understand how environmental, sociocultural, behavioral and biological factors joined to create and sustain these disparities in dementia.

Sia: What made you want to work on dementia and its impact on different communities?

Dr. Hill: Throughout my professional career, I’ve been interested in work that focuses on advancing our knowledge, understanding and response to Alzheimer’s and other dementias, particularly as it affects underserved and underrepresented populations. I’ve been inspired and mentored by so many outstanding individuals along the way. One of my heroes is Dr. Solomon Carter Fuller. When Dr. Alois Alzheimer began researching the disease that now bears his name – he selected several doctors from around the globe to be his research assistants in Germany, including Dr. Fuller, the first known Black/African American psychiatrist, whose work includes some of the earliest publications on dementia in America. Dr. Fuller’s central presence in Dr. Alzheimer’s lab makes a point about representation. His involvement at the very beginning – providing his perspective as part of Dr. Alzheimer’s team – is an important legacy that continues to inspire me and my work.

Sia: What challenges do you face in trying to make dementia care more available everywhere it’s needed?

Dr. Hill: We still have a long way to go to ensure that adequate access to high quality dementia care and disease-related support is available to all who need it, particularly in Black and other historically underserved communities across the country. Our ability to provide quality care and support to underserved populations facing Alzheimer’s and all other dementia is critical to changing health outcomes for all Americans. We are only reaching a fraction of people affected by this disease, and this must change. To expand our efforts, the Alzheimer’s Association is dedicated to bringing culturally relevant resources and information to people in their communities with intentional inclusion.

Sia: How do people’s backgrounds, like where they live or their culture, affect their experience with dementia?

Dr. Hill: A person’s background and life experience very much play a role in their dementia risk. Research suggests that differences in life experiences, socioeconomic indicators and higher rates of health conditions such as cardiovascular disease and diabetes most likely explain the difference in risk for Alzheimer’s and other dementias among groups. Some studies indicate that early life experiences can have detrimental effects on the cognitive health of Black Americans in later life. What’s more, many of the factors that influence the development of dementia could also influence whether and when a diagnosis of dementia occurs. There is evidence that missed or delayed diagnoses of Alzheimer’s and other dementias are more common among Black and Hispanic older adults than among white older adults. Genetics do not appear to be the driving force for some groups having a higher risk of Alzheimer’s or another dementia.

Sia: Do you have any recommendations for how young people, like students who are not yet doctors or scientists, can help reduce the high prevalence of dementia in Maryland?

Dr. Hill: It’s important for young people to understand that caring for and about your brain health should be a life-long pursuit. It’s not just for old people! Science shows us that adopting healthy habits may help reduce the risk of dementia. As many as 45% of dementia cases may be attributable to modifiable risk factors, such as high blood pressure and lack of physical activity. Research shows that adopting healthy behaviors — such as exercising, eating right, getting good quality sleep, and controlling blood pressure — can improve brain health and reduce the risk of cognitive decline. It’s never too early or late to take charge of your brain health.

Sia: What changes would your organization like to see in how we treat and understand dementia in the future?

Dr. Hill: The Alzheimer’s Association vision is: A world without Alzheimer’s and all other dementia. That’s ultimately the goal. To get there we need to continue to advance new and better treatments, while providing quality care and support to individuals and families affected. In the near future, I am excited about advancing technology that will enable us to diagnose Alzheimer’s earlier, so that those diagnosed have the best opportunity for care, management and treatment of the disease. I am also confident that we will continue to learn more about risk reduction and steps every individual can take to reduce their risk of cognitive decline. Ending Alzheimer’s is a lofty goal, but I am hopeful we can get there.

Sia: How do you see tools like art interventions playing a role in improving dementia care, or helping in places with high rates, in the future?

Dr. Hill: One of the most important things we can do to improve dementia care is to commit to person-centered care. Person-centered care is focused on knowing the person we are caring for so we can forge meaningful connections with the person. By knowing the person and the things that made them happy during their earlier life – family and other caregivers can offer reminders of these things to connect with the person. Using art is one possible approach if the person likes art and is creative. But it can include other activities as well depending on the individual — such as music, watching sports or looking at an old photo album. It’s important to focus on the preferences of the person. Find activities that meet them where they are in that moment, and help them enjoy life with dignity.

Sia: What gives you hope that we can make things better for people affected by dementia?

Dr. Hill: I have hope because this is a very exciting time in Alzheimer’s disease research. We now have FDA-approved treatments that can slow progression of the disease. In addition, there are nearly 140 unique therapies that are being tested in clinical trials that target multiple aspects of Alzheimer’s biology. The Alzheimer’s Association is confident that a variety of treatments, earlier detection methods and prevention strategies will be available in the foreseeable future. The speed with which those achievements occur is directly related to the commitment to Alzheimer’s and dementia research. We need to continue to fund disease research and leave no stone unturned in advancing new treatments that can slow, prevent and ultimately cure Alzheimer’s disease.

Sia: What keeps you motivated to keep working on this challenging issue of dementia and dementia care within different groups and places?

Dr. Hill: The short answer is there are millions of individuals and families affected by dementia who need our help. This is particularly true in underserved communities that are disproportionately affected by Alzheimer’s and other dementia. I am proud to lead the Alzheimer’s Association work in reaching these communities. I believe fiercely in health equity so that everyone has a fair and just opportunity to attain their highest level of health, regardless of social, economic, demographic, or geographic differences. As it pertains to Alzheimer’s and dementia that means ensuring all communities have a fair and just opportunity for early diagnosis, treatment, risk reduction and quality care.

Sia: Thank you, Dr. Hill, for helping me better understand how deeply dementia affects not only individuals, but their families and communities, especially those that have been underserved. Your dedication to improving dementia care and your passion for changing the future of brain health are really inspiring and motivating. I’m grateful for the chance to learn from someone who is working so hard to make a difference, and I hope more young people like me will join in the effort to support research, raise awareness, and care for the people impacted by this disease. I really hope your words are a reminder that we can all play a role, and that together, we can build healthy habits and communities that are more prepared to face dementia with compassion and support.