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FSU researcher finds potential new tool for early identification of dementia risk

Research at the Florida State University College of Medicine has identified a potential low-cost method for predicting if a person is at risk of developing dementia.

By analyzing data from nearly 13,000 subjects who participated in a long-term aging study, researchers found that an interviewer’s rating of a cognitively healthy person’s memory successfully predicted the likelihood of developing dementia over a 15-year period. Their findings will be published in the Journal of Alzheimer’s Disease .

“Our findings show that interviewers were able to detect deficits in the memory of participants that predicted higher risk of developing dementia over time,” said research author Angelina Sutin , professor of Behavioral Sciences and Social Medicine. “The interviewer ratings of memory were particularly important for participants who were among the top performers on objective memory tests.”

The results show that ratings of a person’s memory performance by an interviewer could be a valuable alternative or addition to other methods of detection, such as self reporting or cognitive testing.

Sutin’s team analyzed 15 years of data involving nearly 13,000 people without cognitive impairment at baseline who participated in the University of Michigan Health and Retirement Study, or HRS, and whose memory was rated by their interviewer. The longitudinal study surveys a representative sample of adults aged 50 and older about their health, financial situation and well-being every two years for as long as they choose to remain in the study.

Sutin’s sample included participants who were interviewed in 2006 and scored within the normal range of cognitive function during their first interview and had at least one follow-up assessment of cognition between 2008-2020.

Interviewers were trained research assistants working for the HRS who conducted the 2-3 hour interviews and rated the item, “How much difficulty did the respondent have remembering things that you asked (him/her) about?” from 1 (no difficulty) to 5 (could not do at all).

Interviewer-rated memory was entered as a predictor of incident dementia across the 15-year follow-up period. They found that each 1-point increase in poor memory as rated by the interviewer (on the 1-5 scale) was associated with a 40% increase in risk of developing dementia at some point over the follow-up period. This association was apparent even after accounting for potential swaying factors such as depression and poor hearing. Whether the interview was face-to-face or over the phone had no effect on the results.

Notably, the association was even stronger among participants with the best objective memory performance (remembering many words from a long list of words) and subjective memory (how well someone perceives their memory to be). Both objective and subjective memory have been useful in detecting cognitive deficits preceding a diagnosis of dementia.

Of particular interest, Sutin said, is that the results were consistent even among participants who scored in the top quartile of memory function at baseline. Such performance on an objective memory test typically suggests that the individual has good cognitive function and is not at risk of impairment.

“This simple rating by an interviewer is predictive of who develops dementia, particularly when traditional measures of memory function do not necessarily detect memory deficits,” Sutin said. “And the association is similar across age, sex, race, ethnicity and education, which suggests it may be broadly predictive across populations. Overall, we believe these findings show that interviewer-rated memory was a good marker of future dementia among the most cognitively healthy.”

Sutin said the findings support growing evidence for the importance of subjective ratings of memory and extends the association to observers who are not necessarily well-acquainted with the target. Clinicians generally rely on family members in gathering information on cognitive function. This study indicates that an interview with a stranger can also provide valuable information on prospective cognitive health.

Based on the findings, a simple interviewer rating has the long-term power to predict who may develop dementia and could be useful for clinicians in providing effective treatment.

Co-authors on the study were Professor Antonio Terracciano and Assistant Professor Martina Luchetti from Florida State University, Darmris Aschwanden of the University of Geneva in Switzerland and Yannick Stephan of the University of Montpellier in France.

This work was supported by the National Institute on Aging of the National Institutes of Health.

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1Florida Alzheimer’s Disease Research Center (ADRC)

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When it comes to many illnesses and diseases, early detection is crucial. That’s because treatment is most successful in the early stages. It’s no different for Alzheimer’s disease and other neurodegenerative illnesses. When we discover early signs of cognitive decline, we can find ways to preserve brain function and help older adults live better and maintain their independence.

Through our partnership with the  1Florida Alzheimer’s Disease Research Center , a consortium of Florida institutions that conduct Alzheimer’s research, the Center for Cognitive Neuroscience and Aging (CNSA) is poised to do just that: enhance the lives of all older adults. The 1Florida ADRC also focuses on including people from historically underserved communities who may have difficulty accessing care.

The 1Florida ADRC was awarded a five-year, $15 million grant from the National Institutes of Health/National Institute on Aging to collaborate with other top Florida institutions to focus on Alzheimer’s disease prevention, diagnosis, treatment, and education in culturally diverse populations. We’ve come together to put our best research forward to meet a common goal.

• Dr. David Loewenstein, Director of the CNSA within the Department of Psychiatry and Behavioral Sciences, is the Principal Investigator of the Miami site, Clinical Core Leader and is Associate Director of the entire 1Florida ADRC across the State of Florida. Dr. Rosie Curiel Cid, Chief, Cross-Cultural Neuropsychology and Cognitive Neuroscience for the CNSA leads the Outreach, Retention and Engagement Core for the Miami and other two 1Florida ADRC clinical recruitment sites across the state.
• Dr. Elizabeth Crocco, Chief of Geriatric Psychiatry, is lead Memory Disorders expert for the Clinical Core.
• Dr. Tatjana Rundek (Neurology), is Co-Leader of the Education Core for the 1Florida ADRC with the mission of training outstanding leaders in Alzheimer’s disease and related disorders.

Making a Difference in South Florida and Beyond

This partnership and grant make us the Center of Excellence for Alzheimer’s disease in South Florida. And, as one of only 31 ADRCs across the country, the Miller School has a unique opportunity to make a difference on a national level. Our organization, researchers, and trainees make an impact on national initiatives as we contribute to:

• Critical data collection that advances research
• Brain donation that’s essential for testing emerging treatments
• Education programs to train the next generation of Alzheimer’s disease clinicians and researchers

As an academic medical center, we can offer leading-edge diagnostics and treatment. With our combined resources, we can expand memory care access to those who wouldn’t otherwise have this level of care. We can provide them with precise, comprehensive care and access to leading-edge biomarkers that help discover neurodegenerative diseases like Alzheimer’s early, when they’re most successfully treated.

Reaching a Diverse Community

The University of Miami is a major Clinical Core site for the 1Florida ADRC due to our expertise in: recruiting African American and under-represented populations (Drs. Curiel Cid and Loewenstein), UM’s expertise in creating novel cognitive stress paradigms sensitive to early biomarkers of Alzheimer’s Disease (Drs. Curiel Cid and Loewenstein), expertise in vascular and other comorbidities in the elderly (Drs. Rundek and Xioyan Sun), our expertise in psychiatric disorders in Alzheimer’s disease and related disorders (Dr. Elizabeth Crocco), and our excellent CTSA and other training programs (Dr. Rundek).

Early detection of Alzheimer’s disease and related dementias has become a national priority – particularly in diverse ethnic and racial groups who often are underrepresented in clinical trials and research. As part of the grant, our researchers are conducting a multicultural observational study (not involving treatment) of underrepresented populations, including Black and Hispanic older adults. This ensures what we learn and how we prevent, diagnose, and treat Alzheimer’s disease is based on a multicultural population and can be applied to all older Americans.

We’re seeking to understand the aging brain before symptoms occur. Our researchers check participants for early memory changes using a novel cognitive stress test (the Loewenstein-Acevedo Scales for Semantic Interference and Learning test) developed by 1Florida ADRC leaders – Drs. David Loewenstein and Rosie Curiel Cid – at the University of Miami Miller School. The test can discover changes before traditional cognitive testing can detect them. We perform comprehensive testing and follow up with participants annually.

The study includes older adults who:

• Don’t have symptoms but may be concerned they’re at risk because of their age or a family history of memory disorders
• Have cognitive symptoms but haven’t been diagnosed yet
• Have been diagnosed with early mild cognitive impairment

We’re the only Alzheimer’s disease Center of Excellence in South Florida conducting this comprehensive research. Our multicultural, multilingual team ensures participants receive culturally sensitive care. This allows us to engage fully with our richly diverse South Florida communities.

Comprehensive, Collaborative Training

For those interested in pursuing a career in Alzheimer’s disease research or care, we provide a depth and breadth of education and experience you won’t find anywhere else – including our Alz Stars program, which offers an all-Alzheimer’s curriculum and an opportunity to do research. Our programs allow trainees to explore and specialize in various areas, including neurodegenerative disease, aging, cognition, cognitive test development, neuropsychology, geriatric psychology, and more.

Whether you’re a student, a postdoctoral fellow in neuropsychology or neuropsychiatry, or an attending physician early in your career, you have access to top researchers and clinicians who offer mentorship and guidance to help you gain expertise in your chosen area. You take part in national Alzheimer’s disease initiatives and work with top researchers through the 1Florida ARDC partnership, collaborating with leaders in their fields.

Our programs offer a comprehensive education that positions researchers and clinicians to become leaders – and ultimately help find a cure for Alzheimer’s disease and other related dementias.

The University of Miami 1Florida ADRC site is recruiting 200 older adult participants with or without memory complaints to study early changes that occur in the aging brain of adults who may be at risk for Alzheimer’s disease and related disorders.

We are located on the medical school campus at 1695 NW 9th Avenue, Miami, Florida 33136. For more information, please call 305-355-9080

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The Active Mind study aims to reduce dementia risk through brain training

University of South Florida continues landmark dementia prevention research with NIH award

• September 27, 2023
• Research and Innovation

Researchers at the University of South Florida St. Petersburg campus have received a grant across the next five years from the National Institutes of Health (NIH) National Institute on Aging to continue ground breaking work in dementia prevention through a clinical research study called Active Mind. 

The Active Mind study is looking for volunteers who are aged 65 years or older or who have mild cognitive impairment to join the fight in dementia prevention. Persons who do not have dementia such as Alzheimer’s disease, have not had a stroke or serious brain injury, but do have some problems with memory may qualify. Researchers are especially interested in enrolling African American and Hispanic American participants. African Americans and Hispanic Americans are at an increased risk for dementia such as Alzheimer’s disease. 

The Active Mind study examines whether computerized brain training can reduce risk of dementia such as Alzheimer’s disease. Dementia prevention research takes on increased urgency as no proven treatments exist to cure Alzheimer’s disease, the most common form of dementia, which affects more than 5 million Americans. 

The Active Mind study builds on research by the study scientists showing that certain computerized brain training may reduce risk of dementia by 29-48% across 10 years. While these results are encouraging, dementia was not clinically diagnosed in the study participants. Active Mind hopes to provide stronger evidence that computerized brain training can be used for Alzheimer’s prevention.

In the Active Mind study, researchers will determine which types of computerized brain training have the best chance to reduce dementia such as Alzheimer’s disease.  Study sites include the University of South Florida, University of Florida, Clemson University, and University of California San Francisco in collaboration with University of Minnesota and Posit Science Corporation.

Jennifer O’Brien, Associate Professor of Psychology and investigator of the St. Pete site, says that community participation is critical to the success of this study.

“Research suggests that delaying the onset of dementia by a single year would result in millions of fewer cases over the next 30 years. By participating in this study, volunteers will contribute to our work on how to possibly prevent dementia and have the potential to positively impact our lives and the lives of future generations,” O’Brien says. 

Active Mind participants will be asked to complete in-person study visits across two years and complete at least 40 hours of computerized exercises. Enrolled study participants will receive a free iPad®. Those interested in the Active Mind study may participate at the University of South Florida St. Petersburg or Tampa campuses. 

For more information, or to volunteer, please visit the Active Mind study website  or call (727) 873-4090.

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Florida researchers present findings at Alzheimer's Association conference

Researchers are exploring how a wide range of factors including racism and gut health can contribute to Alzheimer's and related dementias.

Florida researchers are sharing findings that can help people better understand Alzheimer's disease and dementia at the Alzheimer's Association International Conference in San Diego this week.

There are 32 experts from the state presenting a diverse body of research at the conference , including several from the University of South Florida in Tampa, according to Stefanie Wardlow, the association’s Florida research champion.

One study from USF neuropsychologist Tanisha Hill-Jarrett highlights how racism and discrimination can harm brain health in Black Americans, who have a much higher risk for developing Alzheimer’s than white Americans. Her research found improving social support networks for individuals could help protect against that harm.

Another study from Hariom Yadav, director of USF’s Center for Microbiome Research, suggests that keeping the bacteria that live in our guts happy can help prevent dementia.

Yadav is studying whether reducing inflammation in the gut with diet changes and probiotics can help reduce inflammation in the brain and prevent dementia. His team has had success with mice and is now recruiting people for related research.

“People are always thinking above the neck versus below the neck, now this is bringing a completely different level of understanding in the science, that really the whole body is connected and although the brain controls a lot of functions, lots of other organs including the gut also contribute to maintaining normal brain health,” said Yadav.

RELATED: Alzheimer's researchers are looking beyond plaques and tangles for new treatments

The variety of studies presented at the conference earned praise from Wardlow.

“I think having all these topics being so different really highlights the complication of Alzheimer's disease, you know we really need to look at this disease from all different types of angles, not just one,” she said.

Alzheimer’s research is expanding with the help of new ideas and more funding. Rather than focus solely on amyloid plaques and tau tangles, protein clusters long considered key markers of the disease, Wardlow said researchers are looking at the whole person and their environment to better understand what causes cognitive decline.

Some other Florida institutions represented at the conference include the University of Miami and the Mayo Clinic in Jacksonville.

The Alzheimer’s Association’s Florida chapter published a blog that features highlights from the conference.

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How Florida researchers drove a major new study linking hearing loss to dementia

University of South Florida researchers were major contributors in a recently published study that found hearing aids can slow cognitive decline in some older adults with hearing loss.

It's the latest research showing a possible connection between hearing loss and the onset of dementia in older adults.

In addition to designing, testing and implementing the hearing intervention used in the three-year study, the USF team also trained the audiologists who used it and monitored the participants' outcomes.

In the overall group of adults aged 70 to 84, hearing aids did not reduce cognitive decline.

However, the intervention slowed decline by 48% for participants one of two subsets: those with mild to moderate hearing loss, at an "increased risk for cognitive decline" and also taking part in an observational study of heart health.

The second subset was made up of healthy community volunteers with a "decreased risk for cognitive decline."

Researchers say that improvement from hearing aids was apparent only in the heart study because those participants had "nearly a three-fold faster rate of cognitive decline" over the three years than the healthy volunteers.

The intervention included the use of hearing aids, a hearing kit for self-management, and ongoing instruction and counseling with an audiologist.

“Hearing intervention consists of two components,” explains Dr. Victoria Sanchez, an audiologist with the USF Health Morsani College of Medicine in Tampa. “First are hearing aids and related hearing technologies, and second are the diagnostic and hearing care support services of an audiologist to guide the individual in using these hearing technologies to hear and communicate optimally.”

In addition to Sanchez, USF’s team included audiologist Dr. Michelle Arnold and Theresa H. Chisolm, vice provost for Strategic Planning, Performance and Accountability in the College of Behavioral and Community Sciences.

The Aging and Cognitive Health Evaluation in Elders (ACHIEVE) study was the largest randomized, controlled clinical trial testing whether hearing aids can reduce cognitive decline.

“Important risk factors for cognitive decline and dementia that could be potentially addressed to help reduce dementia include hearing loss, less education in early life, smoking, diabetes, high blood pressure, social isolation and physical inactivity,” Sanchez continues in comments published by USF. “Addressing hearing loss is one way we could reduce the increase rate of older adults living with dementia.”

The study was led by researchers at eight institutions from Nov 9, 2017, to Oct 25, 2019. Results were published in the Lancet on July 18 and reported at the Alzheimer’s Association International Conference in Amsterdam.

Sanchez believes the ACHIEVE research can influence policymakers.

“In many parts of the world we need improved affordable access and insurance coverage for hearing treatment/intervention,” she says.

Anyone with concerns about their hearing with possible risk factors for cognitive decline should talk with their physician and be seen by an audiologist, Sanchez advises.

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University of Florida Expands Dementia Prevention Research Led by Adam Woods, PhD, Associate Director of the Center for Cognitive Aging and Memory in the McKnight Brain Institute

Valerie Patmintra November 22, 2022 Brain Health , Cognitive Aging , News

The University of Florida is expanding its landmark Preventing Alzheimer’s with Cognitive Training (PACT) study to include healthy older adult volunteers from North Florida. The study, led by Adam Woods, PhD , Associate Director of the Center for Cognitive Aging and Memory (CAM) in the McKnight Brain Institute and Associate Professor in the Department of Clinical and Health Psychology, examines whether computerized brain training exercises can reduce the risk of cognitive impairment and dementia among healthy older adults. Now reaching a larger research pool to examine the role of cognitive training on dementia prevention, the study is the largest of its kind to date.

Expanding the University of Florida’s PACT study to Jacksonville will increase the expected study enrollment from 500 to 838 over the next two years. To qualify, participants must be 65 or older with no signs of cognitive impairment or dementia. The study is also looking to attract African-American/Black and Hispanic volunteers, as these populations are at the highest risk for Alzheimer’s disease and other dementias, according to the Alzheimer’s Association.

Thanks to the expansion, those interested in the study may participate at the  University of Florida College of Medicine – Jacksonville , at the University of Florida in Gainesville or the  University of North Florida . 

“The University of Florida in Jacksonville, being so conveniently located downtown, will be able to serve areas of the city that are not convenient to the University of North Florida area. The Jacksonville location is looking to recruit almost 350 participants and is hoping to reach individuals who are traditionally underrepresented in Alzheimer’s prevention research, such as people from the Black and Hispanic communities in Jacksonville.” Adam Woods, PhD , PACT UF site-Primary Investigator, Associate Director of the Center for Cognitive Aging and Memory (CAM) in the McKnight Brain Institute and Associate Professor in the Department of Clinical and Health Psychology

Learn More About the Pact Study Expansion

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Our Foundation is a 501(c)3 non-profit charitable organization.  Our Mission is to advance research, education and outreach for neurodegenerative diseases.

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We hope that you will support us in our Mission. Learn more about our fundraising efforts and goals on our website, attend one of our in-person educational or wellness events, or join us at our Annual gala fundraising event. If you are able to make a contribution, please consider a tax-deductible donation on our Donate page.

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Stay informed with the latest news, research, and events on our Programs & Events page. From wellness activities to community lectures to groundbreaking research initiatives, we aim to have a meaningful impact on neurodegenerative diseases.

We are so grateful to all of our supporters over the last 19+ years. A special thanks to Aces for Alzheimer’s, The Altman Family, Memories for Mary (founded by David Twardock), Karen Schreiber, the BrainMind Foundation, and our Grateful Patients for their continued support and guidance.

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Philip Sisser B.S.

Prior to joining PAREF, Philip served as a research assistant in the Trace Minerals and Nutrition Lab at Cornell University. His research was primarily centered on how micronutrients found in plants can impact the human digestive system, including mineral absorption as well as the microbiome, which refers to the thousands of bacterial types that live in the human body. After developing the research basis for the study of a small compound found in soybeans, he presented the study’s findings at Cornell University’s research symposium, and subsequently, this work has been published in the peer-reviewed medical journal Nutrients .

Philip’s interest in medicine, and specifically medical research, began while working at Cayuga Medical Center in Ithaca, New York. He has also previously served as an intern in the ophthalmology, gastroenterology, and perioperative care units during a program at the Northshore University Hospital in Manhasset, New York.

Philip has a degree in environmental science from Cornell’s College of Agriculture and Life Science, where he served for two years as an assistant in the chemistry department. Philip also studied at Sorbonne University in Paris and is fluent in French.

Dr. Christine Greer, MD, MS

Christine Greer, MD MS  is a board-certified ophthalmologist who specializes in comprehensive ophthalmology and cataract surgery. Dr. Greer devotes herself to providing patients with the most advanced medical and surgical care in ophthalmology. Throughout her career, she has demonstrated excellence in research, teaching, and foremost, patient care.

After obtaining a Master of Science degree from the College of Physicians and Surgeons at Columbia University, Dr. Greer completed medical school at the University of Miami Miller School of Medicine. There, she was recognized as *The Unsung Hero* for her “quiet, consistent, and unselfish use of unique skills, time, and effort to further the mission of the medical school”. She completed ophthalmology residency training at the prestigious University of Southern California Roski Eye Institute, a U.S. News and World Report top 10 institution, where she served as chief resident. She was honored by her peers for outstanding team leadership and teaching in resident training. She completed additional fellowship training at Weill Cornell Medical College, New York-Presbyterian Hospital. 

Dr. Kellyann Niotis, MD

Kellyann Niotis, MD is the first fellowship-trained preventive neurologist whose mission is to reach and educate as many people as possible who are at-risk for neurodegenerative disorders such as Alzheimer’s disease, Lewy Body Dementia, and Parkinson’s disease. Neurology is known as the medical specialty full of devastating diseases without cures. When she chose to specialize in neurology, she heard this told over and over again. Her goal is to change this conception and bring the field of preventive neurology to the forefront of neurological care.

Dr. Niotis completed her medical internship and neurology residency at NewYork-Presbyterian/Weill Cornell Medical Center, serving as Chief Resident during her final year and the inaugural McGraw Fellow in Neurology Research. She has also completed a fellowship in movement disorders at the Icahn School of Medicine at Mount Sinai under the mentorship of Drs. Susan Bressman and Rachel Saunders-Pullman, as well as advanced training in preventive neurology under the mentorship of Dr. Richard Isaacson.

She currently leads the preventive neurology program within Early Medical, a practice focused on the applied science of longevity. Previously, she managed the country’s first Alzheimer’s Prevention Clinic at Weill Cornell Medical College/NewYork-Presbyterian Hospital and established Parkinson’s and Lewy Body Prevention Programs.

Her research interest is in personalized risk reduction interventions in patients at risk for neurodegenerative diseases. Her work has been published in peer-reviewed journals including Neurology , Frontiers of Aging Neuroscience , Movement Disorders , Alzheimer’s & Dementia, and Journal of the Prevention of Alzheimer’s Disease, and has been presented at national and international conferences. She has received numerous honors and awards, and her opinions have been featured in several popular media outlets including CNN and Healthline.

Dr. Richard S. Isaacson, MD

Dr. Isaacson served as director of the Alzheimer’s Prevention Clinic (APC), Weill Cornell Memory Disorders Program, assistant dean of faculty development, and associate professor of neurology at Weill Cornell Medicine & New York-Presbyterian. With his robust clinical practice and broad background in computer science, m-Health, biotechnology, and web development, he led interwoven clinical research and technology teams at the APC. Isaacson’s team rigorously evaluated the effects of personalized, evidence-based multi-modal interventions on cognition, serum/radiologic biomarkers of AD, and calculated AD and cardiovascular risk.

Isaacson has published novel methods for using a precision medicine approach in real-world clinical practice of risk reduction for AD. He served as principal investigator (PI) for the APC Comparative Effectiveness Dementia & Alzheimer’s study and has served as PI and/or co-PI on several past AD research grants related to AD prevention, treatment, and education.

“Alzheimer’s disease has impacted me on a personal level including my uncle Bob who was diagnosed while I was in high school as well as my cousin who was diagnosed about 15 years ago,” said Isaacson. “I am passionate about applying a comprehensive approach toward both the prevention of Alzheimer’s disease and more recently Parkinson’s and Lewy Body dementia.”

Before his tenure at Weill Cornell Medicine, Isaacson previously served as associate professor of clinical neurology, vice chair of education, and education director of the McKnight Brain Institute in the Department of Neurology at the University of Miami Miller School of Medicine.

He completed his residency in neurology at Beth Israel Deaconess Medical Center/Harvard Medical School, and his medical internship at Mount Sinai Medical Center in Miami Beach. Before he joined the University of Miami, he served as associate medical director of the Wien Center for Alzheimer’s disease and Memory Disorders at Mount Sinai.

Isaacson led the development of Alzheimer’s Universe (AlzU.org) a vast online education research portal on AD (more than 2 million unique visitors) with results published in the Journal of the Prevention of Alzheimer’s Disease; Journal of Communication in Healthcare, Alzheimer’s & Dementia: Translational Research & Clinical Interventions; and Neurology .

Dr. Stuart H. Isaacson, MD

The development of new treatments for Parkinson’s disease and other movement disorders, including essential tremor, dystonia, restless legs syndrome, Huntington’s disease, and atypical forms of parkinsonism, has long been the research focus of Dr. Isaacson. He has been involved in over 75 clinical trials and has served on national and international committees for many drug development programs and trials, as well as for the Parkinson Study Group and the movement disorders section of the American Academy of Neurology. Dr. Isaacson has authored or co-authored nearly 100 abstracts, journal articles, and book chapters. He lectures frequently and has presented abstracts at national and international scientific meetings and patient symposiums, and has trained numerous physicians in the injection of botulinum toxins. Dr. Isaacson has worked closely with national foundations, including the Michael J. Fox Foundation for Parkinson’s Research. He is a member of the American Academy of Neurology and the Movement Disorders Society, among others, and has been recognized as Best Doctors in America, America’s Top Physicians, and Florida SuperDoctors.

Welcome! The Alzheimer's Disease Research Center (ADRC) at Mayo Clinic promotes research and education about healthy brain aging, mild cognitive impairment, Alzheimer's disease, and other related dementia disorders. For patients and families affected by Alzheimer's disease or a related dementia, the ADRC at Mayo Clinic offers education and support programs, as well as opportunities to participate in clinical trials and research discoveries.

This website is dedicated primarily to the community outreach activities of the ADRC at Mayo Clinic in Jacksonville, FL. To view the main Mayo Clinic ADRC website, click here .

Use the menu above or click on the tiles below to learn more and get involved in our community outreach efforts.

MAYO CLINIC FLORIDA ADRC NEWS

Mayo clinic and bethel baptist event on may 6 to promote brain health.

May 1, 2023

More than six million people in America have Alzheimer’s disease, including nearly 600,000 people living in Florida. Racial and ethnic minorities are at an even greater risk of Alzheimer’s and other neurodegenerative diseases.

To educate the public on ways to improve brain health and reduce the risk of memory loss, Mayo Clinic and The Bethel Baptist Church will hold a community event open to the public from 10 a.m. to 1 p.m. on May 6 at the downtown church titled: " Pathways 2 Brain Health ."

"African Americans are twice as likely as white Americans to develop Alzheimer’s disease or other dementias and we believe it’s important to promote brain health to reduce the risk of memory loss and promote healthy aging," says Gregory Day, M.D. , a neurologist with the Mayo Clinic Alzheimer Disease Research Center . "Our goal is to provide attendees with an understanding of brain health and memory loss, and practical strategies for reducing the risk of memory loss and improving the quality of life for those living with memory disorders."

Attendees will receive information on the latest research and treatments for Alzheimer's disease and related memory disorders. They will learn from leading experts in brain health, aging, and caring for a loved one with memory loss. Topics include:

• Proactive brain health for all ages
• Strategies for maintaining brain health and reducing the risk of memory loss
• Understanding brain health
• What is dementia, and is it reversible?
• Risk factors for memory loss and Alzheimer's disease
• Caregiving techniques for those living with memory loss

Brain health is a crucial aspect of overall well-being, yet many people need to be aware of the steps they can take to promote brain health and reduce the risk of memory loss.

"For far too long, the issues of the brain and its health have not been a priority in the African American community," says Bishop Rudolph McKissick, Jr. , senior pastor of The Bethel Church. "I am thankful that Mayo Clinic will partner with us to bring attention to brain health so that our resilience begins with healthy streams of consciousness that result in health and wholeness in our living."

Mayo Clinic Jacksonville gets $41 million grant for major Alzheimer's study

March 29, 2023

Mayo Clinic in Jacksonville has received a $41 million federal grant for a potentially groundbreaking study to better understand Alzheimer's disease and how the brain disorder affects people of different ethnic groups. Alzheimer's disease afflicts African-Americans at a rate twice as high as that in white populations. For Latino Americans, the risk is 1.5 times greater than that in whites. According to Dr. Nilufer Ertekin-Taner, a Mayo Clinic professor of neuroscience and neurology who is a co-principal investigator of the study, "These populations have traditionally been understudied for Alzheimer's disease, leading to a major knowledge gap.” With this study, Dr. Taner hopes to bridge that gap and create opportunities for all Americans, regardless of race or ethnicity, to benefit from the right treatments at the right time. Such breakthroughs are made possible by the participation of African Americans and Latino Americans from the Jacksonville community in Mayo Clinic Alzheimer’s Disease Research Center studies. For more information about this study, please visit: Mayo Clinic Jacksonville gets $41 million to study Alzheimer's

Seeking Current and Former Family Caregivers

March 28, 2023

Caring for a family member with dementia is demanding, and research has shown that it can negatively affect the physical and mental health of caregivers.

The Connect2Caregivers research study is being done to develop a unique matching process for connecting current and former caregivers with one another for the purpose of peer-to-peer emotional support.

The study will help researchers determine whether caregivers of persons with dementia would find a technology-based caregiver matching program valuable. if you are interested in learning more, please visit the  study recruitment flyer  or contact the study coordinator at  [email protected] .

ADRC Researchers Discuss the Latest Findings from the Alzheimer's Association International Conference

August 23, 2022

Drs. Gregory Day and Jun Min Koay appeared on the News4Jax morning show to discuss the work they presented at the recent Alzheimer’s disease conference. “Research is key to finding the solution” and bringing hope to people with dementia, but there remains a “need to engage people across our diverse landscape and have all communities represented.”  If you would like to join the fight against Alzheimer's disease and participate in a study, contact us at 904-953-6523

Mayo Clinic Investigators Work to Develop a Blood Test to Accurately Diagnose Alzheimer’s Disease in African Americans

June 30, 2022

Mayo Clinic researchers are developing a simple blood test to make it possible for African Americans to get an accurate diagnosis of Alzheimer’s disease. This is possible because Jacksonville community members consented to donate blood samples to advance Mayo Clinic studies on aging, memory loss, and dementia. We are grateful to our local community for their support and partnership in working towards a cure for Alzheimer's disease and related dementias. To quote Dr. Minerva Carrasquillo, “Determining the most relevant risk factors and mechanisms of disease in each community will help us develop ways to prevent and treat Alzheimer’s disease equitably in all communities.” Please visit the Jacksonville Free Press website to learn more about this study. If you are interested in joining the fight against Alzheimer's disease, contact us at 904-953-6523.

Mayo Clinic Conference on Brain Health & Dementia to take place virtually on October 29th, 2021

Conference on Brain Health & Dementia at a Glance:

Date: Friday, October 29 th

Time: 10:30am-5:30pm ET

Location: Virtual

Formerly known as 'Meeting of the Minds', the Mayo Clinic Conference on Brain Health & Dementia will pay tribute to all that families impacted by dementia are going through during these unprecedented times, while providing a unique opportunity to learn, feel connected, and gain a renewed sense of hope for a brighter path forward.

Songfest for Alzheimer's: HBCU choirs partner with Mayo Clinic Florida ADRC to help the community learn about Alzheimer's disease.

February 1, 2021

Members of the Aeolian Choir of Oakwood University, Bethune-Cookman University Choir, and Hampton University Concert Choir have partnered with the community outreach program of the Mayo Clinic Florida Alzheimer’s Disease Research Center (ADRC) and The Bethel Church to create a virtual concert program to help raise awareness of Alzheimer's disease. Pre-recorded selections from prior live performances at The Bethel Church were compiled along with important messages about Alzheimer's disease from Drs. Floyd Willis and Maisha Robinson of the Mayo Clinic Florida ADRC. This hour-long event streamed on The Bethel Church social media platforms on Saturday, January 30, 2021.

If you would like to view the program, please click on this link to The Bethel Church YouTube channel .

Pressing Toward the Mark: A Faith-Based Approach to Dementia Education

August 26, 2020

Dr. Maisha Robinson of the Mayo Clinic Alzheimer’s Disease Center was awarded a grant from the Community Foundation of Northeast Florida to forge partnerships with local Black Churches and the Alzheimer’s Association to help provide resources in their approach to congregation members who are having memory issues or other signs of Alzheimer’s Disease and dementia.

Mayo Clinic ADRC investigators study form of Alzheimer's disease that strikes younger adults.

June 17, 2020

Mayo Clinic researchers have defined a form of Alzheimer’s disease that can strike younger people as early as their 40s, presents with symptoms that are different from typical Alzheimer's disease, and affects a different part of the brain than is typically seen in Alzheimer’s disease.

In a paper published in the journal Brain Communications , the ADRC researchers report a series of 55 patients with this form of Alzheimer's disease. The average age of symptom onset was approximately 54 years old, whereas typical Alzheimer's is most likely to appear after age 65. In these patients with younger onset Alzheimer's disease, the progressive dementia syndrome more prominently affected the ability to multitask, organize and plan, whereas the memory deficits seen in typical Alzheimer’s disease were not as significant. In fact, many patients showed no dysfunction or cell loss in the memory center of the brain. This pattern of Alzheimer's disease has been observed before, but the new study helps characterize and understand it better.

A Message to the Community from the Mayo Clinic Florida Alzheimer's Disease Research Center Outreach Team

June 8, 2020

We recognize the long-standing social, economic and political inequalities that underlie current nationwide demonstrations for social justice. We are committed to maintaining and strengthening relationships with our community partners to address disparities in all forms and to eliminate the systemic racism and discrimination that perpetuate these social ills.

We understand that these are unprecedented times but our priority will always be the health and well-being of our community members. We strongly believe that change is needed and we strive to be a positive force for change in the communities we serve.

Statement from Gianrico Farrugia, M.D., President & CEO, Mayo Clinic and Jeff Bolton, Chief Administrative Officer, Mayo Clinic

May 27, 2020

We were deeply saddened and troubled to learn the tragic news of George Floyd’s death in Minneapolis, so close to home to many of us. Mr. Floyd died on Monday after being held down by a Minneapolis police officer.

This is just one of several recent incidents drawing national attention that show that we as a society still have a long way to go in stamping out violence and hate, negative biases and stereotypes.

Mayo Clinic stands united in rejecting all forms of discrimination against our staff, our patients and people in our communities. These incidents are deeply troubling, and combined with daily news about COVID-19, they are even more stressful.

We invite everyone to renew your commitment to supporting our colleagues. Be there for each other, help one another, be a force for good and hope for one another, inside and outside of Mayo Clinic.

Mayo Clinic Florida Resumes Alzheimer's Disease Research Visits & Community Outreach Events

June 1, 2020

The Mayo Clinic Alzheimer’s Disease Center has re-opened and will gradually resume research visits and community outreach activities in the coming weeks. We look forward to resuming our important work of discovering and developing effective therapies in the fight against Alzheimer's disease and AD-related dementia.

Mayo Clinic has taken several extra precautions to safely resume in-person visits, including enhanced cleaning, robust screening, new safety guidelines and strategies to minimize the risk of the COVID-19 virus on our campus.

If you are in a research study, you may receive a call from a study coordinator to schedule an appointment. Some visits may be in-person but for other visits we may be able to offer a virtual visit online. Please feel free to ask your study coordinator about these options. If you have questions, please call us at 904-953-6523.

Similarly, we will be continuing our community partnerships in education, skill-building, and caregiver support. Although some of the larger community events we had planned for this year will need to be scaled back or postponed, we soon plan to move forward with activities such as our Memory Cafe and Community Support groups. Please know that we will do everything possible to ensure community health, wellness, and safety as our top priority, and that we will continue to offer virtual online activities for those unable to join us in person.

Please visit our event calendar for updated information about virtual and in-person events, dates, locations, and links.

Thank you! We hope that you and your loved ones remain safe and healthy.

COVID-19 UPDATE: Mayo ADRC Research Visits & Community Outreach Events Postponed

May 4, 2020 (updated from March 16, 2020)

In response to the COVID-19 outbreak, the Mayo Clinic Alzheimer’s Disease Research Center executive team has suspended all in-person research visits and outreach activities through May 31, 2020. This includes visits to Mayo Clinic for study exams, brain imaging, blood draws, and lumbar puncture procedures. It also includes all in-person educational and support programs and events through at least May 31, 2020.  If you are a research participant who also receives medical care at Mayo Clinic, those appointments will be managed by your healthcare provider on an individual basis. 

We will continue to monitor the situation and will provide updates on our research visits and outreach events as the COVID-19 situation evolves. We would like to thank you all for your dedication to dementia awareness and education, and for your support and commitment to dementia research.

If you are a Mayo Clinic ADRC study participant and have questions about your study visit, please call 904-953-6523.

Dr. Maisha Robinson awarded Florida Department of Health Ed and Ethel Moore Alzheimer's Disease Research Program Grant

January 13, 2020

Congratulations to Mayo Clinic ADRC investigator, Dr. Maisha Robinson, for being one of 4 Mayo Clinic recipients of a Florida Moore grant. Her project: Between Here and There: Addressing End-of-Life Disparities Among African Americans with MCI and Dementia Through Community-Based Training in Advance Care Planning seeks to empower African American communities to ensure that the end-of-life wishes and preferences of community members with memory loss and dementia are made known, documented, and respected. Gov. Ron DeSantis announced the awards at a press conference on January 13.

The Ed & Ethel Moore grant program funds research seeking to improve the health of Floridians through better prevention, diagnosis, and treatment for Alzheimer’s disease and AD-related dementia. Congratulations are also in order for the three other Mayo ADRC investigators awarded Moore grants:

• Dr Pamela McLean , Modeling Lewy body dementias: Towards a better understanding of amyloid-beta and alpha-synuclein in ADRDs .
• Dr. Rickey Carter , Racial and Ethnic Differences in Gene Expression Data .
• Dr. Pritam Das , Detection of vascular and inflammatory plasma biomarkers in patients diagnosed with obstructive sleep apnea and cerebral small vessel disease .

National Institutes of Health Receive Boost in Alzheimer’s Disease Funding

December 20, 2019

The US Senate has approved a $350 million increase in funding for the National Institutes of Health (NIH) to advance research on Alzheimer’s disease (AD) and AD-related dementia. This raises the total NIH budget for AD research to $2.8 billion for fiscal year 2020, recognizing the widespread public health crisis presented by this disease.    Over the last five years, advances in research have led to many discoveries, including new genes and pathways linked to the disease. The increased funding will help keep momentum going towards the discovery of new and effective treatments.

AD cannot currently be cured and is considered the most expensive disease in the country, costing taxpayers $290 billion in 2019. More than 5 million Americans are currently living with the disease and an estimated 16 million more are providing unpaid care to loved ones with dementia. As noted by the Alzheimer’s Association, "we owe it to these individuals and the millions more who will be impacted in the coming years to leave no stone unturned so we can advance treatments and find a cure for this devastating disease."

DR. FLOYD WILLS HONORED AS "COMMUNITY HEALTH HERO"

October 18, 2019

Dr. Floyd Wills, Family Medicine physician and investigator in the Mayo Clinic Alzheimer's Disease Research Center, has been named a recipient of the inaugural "Community Health Heroes" award from Agape Family Health, a local non-profit organization whose mission is to make comprehensive healthcare services available to the entire Jacksonville community, regardless of race, national origin, gender, age or socioeconomic status.

Dr. Willis is recognized for his research in Alzheimer’s disease among African-Americans, as well as for his current partnership with Edward Waters College to examine the potential role of students from minority-serving institutions in providing health education to the surrounding community.

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University Of South Florida Seeks Participants To Continue Landmark Dementia Prevention Research

Researchers at the University of South Florida St. Petersburg campus have received a grant from the National Institutes of Health’s (NIH) National Institute on Aging which will allow them to continue their groundbreaking work in dementia prevention. Their clinical research study is called Active Mind.

If you are 65 years or older or if you have mild cognitive impairment, you may join them in the fight in dementia prevention. People who do not have dementia, such as Alzheimer’s disease, and have not had a stroke or serious brain injury but do have some problems with memory may qualify. Participants who are African American or Hispanic American are especially needed as participants. African Americans and Hispanic Americans are at an increased risk for dementia, including Alzheimer’s disease.

Community participation is critical to the success of this study. According to Dr. Jennifer O’Brien, associate professor of psychology and investigator of the St. Petersburg campus, “Research suggests that delaying the onset of dementia by a single year would result in millions of fewer cases over the next 30 years. By participating in this study, volunteers will contribute to our work on how to possibly prevent dementia and have the potential to positively impact our lives and the lives of future generations.”

The Active Mind study examines whether computerized brain training can reduce the risk of dementia. Dementia prevention research takes on increased urgency, as no proven treatments exist to cure Alzheimer’s disease, the most common form of dementia, which affects more than 5 million Americans.

The Active Mind study builds on research by the study scientists showing that certain computerized brain training may reduce risk of dementia by 29-48 percent across 10 years.

Active Mind participants will be asked to complete the in-person study visits across two years and complete at least 40 hours of computerized exercises. Enrolled study participants will receive a free iPad®. If you are interested in the Active Mind study, you may participate at either the University of South Florida St. Petersburg or Tampa campuses.

For more information, or to volunteer, please visit https://activemindstudy.com/ or call 727-873-4090.

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It’s time to re-think what we know about Alzheimer’s.

Every day, our dedicated team of researchers is working to find ways to prevent dementia, such as Alzheimer’s disease. We can’t do it alone. If you’re aged 65 plus, please volunteer for the PACT (Preventing Alzheimer’s with Cognitive Training) Research Study to see if computerized training exercises can reduce the risk of dementia.

Potential Benefits of Computerized Training Exercises

Our research has shown that brain games may: • Protect against dementia, such as Alzheimer’s disease • Enhance mental quickness and visual attention • Improve gait speed and balance • Improve driving safety • Maintain health and well-being • Allow you to perform everyday tasks more efficiently • Protect against depression

Your Commitment

If you qualify to help, you will complete 3 study visits lasting no more than 2 hours each at the PACT research study location nearest you, and 45 one-hour sessions on your own, in your own home, over the next 3 years.

Can you help? You may qualify if you:

• Are 65 years of age or older

• Do not have any neurological disorders

• Have not had a stroke or brain injury

• Do not have mild cognitive impairment or dementia such as Alzheimer’s disease

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• Open access
• Published: 29 April 2024

Insights into designing educational materials for persons living with dementia: a focus group study

• Charity M. Hoffman 1 ,
• Sarah E. Vordenberg 1 ,
• Amanda N. Leggett 2 ,
• Esther Akinyemi 3 ,
• Molly Turnwald 1 &
• Donovan T. Maust 1  

BMC Geriatrics volume  24 , Article number:  380 ( 2024 ) Cite this article

243 Accesses

Metrics details

Persons living with dementia (PLWD) may experience communication difficulties that impact their ability to process written and pictorial information. Patient-facing education may help promote discontinuation of potentially inappropriate medications for older adults without dementia, but it is unclear how to adapt this approach for PLWD. Our objective was to solicit feedback from PLWD and their care partners to gain insights into the design of PLWD-facing deprescribing intervention materials and PLWD-facing education material more broadly.

We conducted 3 successive focus groups with PLWD aged ≥ 50 ( n  = 12) and their care partners ( n  = 10) between December 2022 and February 2023. Focus groups were recorded and transcripts were analyzed for overarching themes.

We identified 5 key themes: [1] Use images and language consistent with how PLWD perceive themselves; [2] Avoid content that might heighten fear or anxiety; [3] Use straightforward delivery with simple language and images; [4] Direct recipients to additional information; make the next step easy; and [5] Deliver material directly to the PLWD.

PLWD-facing educational material should be addressed directly to PLWD, using plain, non-threatening and accessible language with clean, straightforward formatting.

Peer Review reports

The number of persons living with dementia (PLWD) in the U.S. is projected to grow to 50 million people by 2050 [ 1 ], with 153 million globally by that time [ 2 ]. Most healthcare systems are poorly equipped to serve these patients and address their complex medical and psychosocial needs [ 3 ], reflected by the fact that PLWD have higher rates of emergency department visits and hospital admissions, with higher treatment costs [ 4 , 5 , 6 , 7 ].

One factor contributing to PLWD medical complexity is complicated medication regimens that may lack benefit (e.g., cholinesterase inhibitors), lead to harm (e.g., antipsychotics), or pose adherence challenges (e.g., cognitive impairment, difficulty swallowing) [ 8 , 9 , 10 , 11 ]. The potential for deprescribing—i.e., the intentional de-escalation or discontinuation of a medication in collaboration with a healthcare professional [ 12 ]—has been of growing interest to potentially simplify and improve care for PLWD [ 13 ]. Psychotropic and opioid medication (“Central nervous system [CNS]-active” hereafter) prescribing to PLWD is of particular concern given the associated increased risks of impaired cognition, falls, respiratory suppression, and even death for older adults. Risks are particularly elevated for PLWD who experience CNS-active polypharmacy (3 or more psychotropic and/or opioid medications) [ 14 , 15 ], which is common and considered potentially inappropriate for older adults by the American Geriatrics Society Beers Criteria [ 16 , 17 ].

The EMPOWER study demonstrated that a direct-to-patient educational nudge was an effective intervention to reduce sedative-hypnotic use by older adults without significant cognitive impairment [ 18 ]. Educational nudges include carefully framed information designed to influence behavior without removing patient choice [ 19 , 20 ]. However, existing literature about medication management for PLWD has primarily focused on medication administration by caregivers—as opposed to making decisions about continuing or stopping medications—and interventions have not been co-designed with PLWD or their care partners [ 21 ]. Therefore, we sought to adapt the EMPOWER intervention by collaborating with PLWD and their care partners to develop an educational nudge to encourage PLWD who are prescribed CNS-active polypharmacy to talk with their healthcare professional about the appropriateness of their current medication regimen. Our intervention adaptation was guided by FRAME, which is a guide for adapting and modifying interventions [ 22 ]. We chose to co-produce the intervention materials with participants, by including PLWD and caregiver perspectives and valuing their knowledge during the design process [ 23 ]. This co-production approach was critical because dementia changes cognitive domains including attention, language, and visuospatial abilities (e.g., ability to read and comprehend), which may limit the ability of PLWD to understand complex health-related information and apply it to their own circumstances.

In this article, we discuss lessons learned from a series of focus groups with PLWD and their care partners, which may help inform interventions that include a direct education nudge through written materials. The focus groups were conducted as part of an NIA-funded pilot study of an embedded pragmatic intervention to reduce potentially inappropriate prescribing to PLWD exposed to CNS-active polypharmacy. The overarching goal of the study was to explore whether a direct-to-patient educational nudge co-produced with PLWD and their care partners might increase deprescribing conversations with doctors and ultimately reduce potentially inappropriate medication usage. In this paper, we specifically report on the findings from focus groups conducted with PLWD and their care partners that may help researchers and healthcare systems develop PLWD-facing educational materials.

Study design

This study was developed by a team that included two geriatric psychiatrists, a clinical pharmacist, a social worker, and a gerontologist. We set out to create an informational brochure about the risks associated with CNS-active polypharmacy (i.e., 3 or more psychotropic and/or opioid medications) among PLWD. The initial draft was adapted from the EMPOWER intervention, which addressed sedative-hypnotic prescribing among older adults (without significant cognitive impairment). In addition, while drafting the study brochure, the OPTIMIZE trial [ 24 , 25 , 26 ]—which focused on polypharmacy of 5 or more medications from any therapeutic class specifically among PLWD—was published and available as an alternative model. Our goal was to use feedback from three successive focus groups to iteratively modify the draft of the CNS-active polypharmacy brochure. We wanted to ensure that the content was accessible, useful, and motivated recipients (PLWD and their care partners) to initiate a conversation with their doctor about whether all of their prescribed medications continue to be necessary. Consistent with recommendations from the Dementia Engagement and Empowerment Project (DEEP) [ 27 ], we enlisted care partners (a supportive family member, partner or friend) to join the PLWD in reviewing materials [ 28 ]. In future interventional studies, we plan to deliver written information to PLWD via mail, therefore we provided a copy of the materials via mail ahead of the focus groups.

At least one week prior to the focus group, a copy of the most recent brochure draft was mailed to the participant and his/her care partner. Also included in the mailing was a copy of the consent form and a list of questions to be addressed in the focus group. At the start of the focus group, verbal consent was obtained from each participant. Focus groups took place over video conferencing software (Zoom) and ranged from 60 to 77 min (mean 67 min). Each participant (both the PLWD and care partner) was mailed a $25 check as a thank you for their participation.

Participants and recruitment

Beginning in November 2022, the study team recruited PLWD and care partners from a variety of sources, including: the University of Michigan Health Research website; the National Council for Dementia Minds (NCDM); or a letter sent to patients who were part of the Michigan Alzheimer’s Disease Research Center (MADRC). Eligibility criteria included: (1) age ≥ 50; (2) ability to read and speak in English; (3) dementia of any type, as reported by the PLWD and/or the care partner (i.e., Has a doctor ever diagnosed you with dementia?); and (4) ability and willingness of both PLWD and a care partner to participate in the virtual group discussion. PLWD without a care partner were ineligible to enroll. Recruitment materials informed participants that the research team was seeking to hear the perspectives of PLWD and their care partners as it relates to medications. Information about deprescribing was not included to decrease sampling bias. The research team did not have a pre-existing relationship with participants.

All interested parties completed a brief screening call with a member of the research staff to confirm eligibility; screening calls were completed with the PLWD, their care partner, or both, based on individual comfort.Prospective participants were told that the research team was studying appropriate use of medications in older adults with dementia. During this screening call, participants were asked about their and/or their partner’s gender (PLWD only), age (PLWD only), race/ethnicity and education. One respondent declined to disclose the race of herself and her husband, saying she doesn’t like when people ask about her race. Eligible and interested participants were scheduled for focus groups based on their availability. Focus groups were conducted online to facilitate participation from a geographically dispersed sample. The target number of participants per focus group was 8–12, to include a diversity of perspectives while also ensuring that all participants had an opportunity to speak without feeling overwhelmed or crowded out.

This research was approved by the University of Michigan Institutional Review Board (IRB), which ceded oversight to Advarra, the IRB of Record for the National Institute on Aging’s IMPACT Collaboratory (#Pro00065204).

Interview guide

All team members collaborated to develop a focus group guide to collect information from PLWD and their care partners (See Additional file 1). The guide focused on a few key areas: (1) content (2), graphical presentation, and (3) physical delivery. Each focus group began with a brief overview of the study and an ice-breaker question (e.g., where they were calling from and a favorite seasonal activity) so participants could virtually meet each other.

For the duration of each focus group, we shared images of the brochure on screen to facilitate discussion of specific content and images. We also encouraged participants to refer to the physical copy of the brochure so they could see the version that would be mailed to future participants. We began by examining the cover together, asking what first caught participants’ attention, and what, if anything resonated. We went on to assess participant reactions to the content itself, including specific language. In addition to asking about the length, we obtained suggestions for content to add or remove. Finally, we asked specific questions about sending the brochure, such as: to whom the material should be addressed (e.g., directly to the PLWD or to them and a care partner) and what might increase the likelihood of our unsolicited mail being read rather than discarded. Finally, we asked PLWD/care partner dyads how decisions about their healthcare get made (e.g., who would be involved in a deprescribing decision?).

Brochure design

The initial draft of the brochure was designed by the study team, using the EMPOWER and OPTIMIZE brochures as examples. It was a single page, double-sided, 8-in. × 11-in. three panel brochure printed in color on white cardstock. Findings from each successive focus group informed the next iteration of the brochure (i.e., each set of focus group participants reviewed a slightly modified version). Based on cumulative feedback, the final version of the brochure was created by a graphic designer, in consultation with guidance available online about creating materials for older adults, particularly those with cognitive impairment [ 24 , 25 ]. It was this final version of the brochure that was used on the pilot intervention phase of the research study, which is ongoing (See Additional file 2).

Data collection & analysis

Focus groups were conducted over a HIPAA-approved video-conferencing platform (Zoom) between December 2022 and February 2023. The first author, a trained qualitative social science researcher, facilitated these focus groups; a second author was also present to observe, ask supplementary questions and take notes when schedules permitted (one co-Investigator each at the first and third focus groups). The facilitators had no prior relationship with focus group participants. To refine the brochure for the three successive rounds, we used notes taken during the focus group to identify initial themes for each of the main categories (i.e., content, graphical presentation, and delivery). Following each focus group, the facilitator immediately typed up hand-written notes, which she clustered into themes and key findings and shared with the full study team. These notes and emerging findings were discussed at team meetings and used to inform additional areas to probe. With participants’ consent, the focus groups were recorded and transcribed verbatim by a transcription software embedded in the recording platform. Employing a rapid qualitative analysis method, the study team coded and analyzed these notes, referring back to specific excerpts from the video recordings to provide context or gain further understanding. Points of disagreement among respondents were further explored in subsequent focus groups. Where there remained disagreement among participants, we weighed the tenor of the feedback, as well as the degree of support each side seemed to elicit from other participants. We adhered to Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines and included them as relevant [ 29 ].

We conducted three focus groups with a total of 22 participants—12 PLWD and 10 care partners. The average number of participants per focus group was 7.3. While having a care partner willing and able to join the focus group was a condition of participation, 2 partners ended up being unable to participate due to health challenges. Each focus group participant was unique; that is, no single participant participated in more than one focus group. Additional information about participants, based on self-report, is presented in Table  1 . At the time of the focus group, two-thirds of the dyads lived in Michigan, while one-third lived elsewhere in the continental U.S.

Five key themes from our respondents are highlighted in the section that follows and summarized in Table  2 .

Theme 1: use images and language consistent with how PLWD perceive themselves

Early drafts of the brochure included a vignette highlighting a sample conversation between a patient and her primary care physician. The vignette was accompanied by a photo of a white woman who appeared to be in her upper 70s, wearing tinted glasses and a polka dot dress, with short gray hair, white pearls, and red lipstick on her pursed lips. Participants had a strong reaction to this image. They felt that the image reinforced stereotypes of dementia patients as being elderly, perceived as old-fashioned or past their prime. As one participant put it (PLWD, female): “I see the stigma. I see what everyone thinks of when they hear the word dementia. And I don’t see any of us on this screen that look like that.” Another participant added that upon seeing that image, “Anyone below a certain age doesn’t even open it [the brochure] up” (PLWD, male).

In both the second and third focus group, there was consensus that there should either be no images of patients, or a diverse set of images, so that viewers from various backgrounds might find someone to identify with, regardless of their race, age, or gender. A participant in FG 2 (PLWD, female) said, “If we’re going to use any pictures, let’s represent all of us young people instead of just the stigma of what people think of when they see dementia or hear dementia.” Another participant (CP, female) added, “[….] On commercials on TV sometimes, you’ll see all different ages and ethnicities and that kind of gets the point across, but you’re limited in space here— and somebody would say, oh you left my group out… But you don’t really need three pictures.”

Relatedly, in a section of the brochure labeled “ Did you know?”— which offered some facts about the escalating risks of overprescribing over time as individuals age—the initial draft drew a distinction between “younger” and “older” adults. The focus group participants included some PLWD in their 50s who did not identify as “older” adults and found this language stigmatizing; they suggested modifying it to be more inclusive. One participant (PLWD, female) said, “We could just say, some people don’t have a problem with the combination of certain drugs, where others do. I think the younger/older part got me.” Rather than singling out older adults, the group instead recommended describing how age can affect the efficacy of certain medications “over time.”

Theme 2: use straightforward delivery with simple language, activities, and design choices

Early versions of the brochure included a brief quiz with true/false items. This element was modeled after the EMPOWER brochure and its approach based on constructivist learning theory [ 18 ], which sought to introduce cognitive dissonance related to recipients’ current prescription medication regimens. However, focus group participants expressed strong negative reactions to this mode of presenting information—for PLWD, the quiz felt like an opportunity to fail. Some said it conjured memories of a pop quiz being delivered in school. Then, in addition to the quiz itself causing anxiety, it was constructed such that the correct response for some items was true, while others were false—which also made interpreting the correct answers confusing. One respondent (CP, male) said:

It seems to me that all the answers should either be all true or all false. Because I could see [my wife, who is a PLWD] or my mother coming to me and saying, ‘I got this brochure,’ and I had to kind of think through which wasn’t true, when the other two were. I think I would just make them all true or all false.

As this participant stated, PLWD may find it difficult to keep track of which responses were true and which were false, and presenting facts as questions could impose unnecessary stress.

In addition to the content being a potential source of confusion, the presentation and layout were, as well. A participant in the second focus group (PLWD, female) reported:

“There’s shapes, and there’s black boxes, and there’s different fonts—there’s bold and there’s different sizes of text. […] When I see this, I almost can’t see anything […]. It’s kind of like, when I’m searching for a can of soup at the market—I don’t do that anymore because I just can’t see… I can’t find it. It’s too overwhelming. […] All of a sudden, I can’t…my brain…my eyeballs cannot find what you want me to find.”

For PLWD, not just the content but also the presentation and layout of the content could contribute to information overload.

Theme 3: avoid content that might heighten fear or anxiety

Participants had strong negative reactions to words or images that conjured fear. The initial draft of the brochure had “You may be at risk” in large letters across the opening panel. While some participants found this message to be an appropriate, engaging opener, the majority were turned off by it. As one participant (PLWD, female) explained:

To me, when I first got it in-in the mail, that ‘You may be at risk’ was a little alarming. […] Every morning I take 8 medicines, and I’m just gobbling all the time. And to me, … for someone with dementia, even an early to moderate case, we already feel at risk. […] [G]et rid of the, ‘You may be at risk,’ […] and take away the scary stuff.

In a subsequent focus group, a participant recommended a “non-alarmist approach,” saying that felt “more respectful.” Another PLWD (female) agreed, saying, “[The] one that…where it just starts out with ‘You may be at risk’- having anxiety, that would set me off. [….] ‘Oh my gosh! I need to get into my doctor right away!’ And then you call your doctor, and you can’t get in for three months. Your anxiety is just going to be off the charts.”

Participants also shared concerns about the image that we initially selected to represent polypharmacy. In the original draft, under the “You may be at risk” text, there was a pile of identical medication capsules with an open pill bottle on its side at the edge of the frame. This was perceived as distressingly off-message for at least one participant, who said she associated that many of the same pills with a suicide attempt (CP, female). Another participant concurred, saying, “It does kind of look like an overdose situation” (CP, male). Instead, the group suggested showing a mix of different pills, which they felt would be a less alarming way to represent their experiences of being prescribed a growing number of medications they were expected to take daily.

Theme 4: direct recipients to additional information; make the next step easy

Participants expressed an eagerness to find and explore further resources about navigating medications and cognitive impairment, though they expressed uncertainty regarding appropriate next steps. One PLWD (male), a retired healthcare professional explained how a diagnosis of dementia compares to more “typical” or better understood ailments:

If […] diabetes is given to you as a diagnosis, suddenly there is put into motion three or four different parts that the doctor will wind up saying to the nurse or front desk,‘I need Mrs. So-and-So to have the diabetes protocol. I need her to have the information about going to the class about how to give herself injections, how to monitor their diabetes for a sliding scale, send her to a nutrition class…’ But I don’t know how you’d do that with dementia.

He suggested including links to websites in the brochure so patients can find additional information. His care partner agreed, saying, “Send us to some websites where we can educate ourselves a little bit.”

Likewise, a participant in the second focus group (PLWD, male) suggested including links to websites rather than phone numbers: “I mean, our kids would, you know—where can I go on the app? Where can I go online?”

Another participant (CP, female) recommended including the clinic’s phone number directly in the brochure, saying, “While you’ve got it in your hand, it’s a good time to call. I know with [my husband] and his dementia, he does things right away, so he doesn’t forget. So if it’s right in his hand […] or our mind, you can call while it’s in your hand. You probably have the number [somewhere], but let me tell you, if I don’t have to look it up, I like you guys a whole lot more.”

To reiterate, participants described a lack of clarity on next steps once they received a dementia diagnosis, and wanted the brochure to include some concrete, tangible next steps.

Theme 5: deliver material directly to the PLWD

Participants recommended mailing materials directly to PLWD in a plain, white envelope. Some reported that gimmicky, attention-grabbing junk mail has become so common that they would prefer a simple, straightforward mailing: hand-addressed if possible, with a return address that includes the health system’s name on the front.

“I’m in the position of tossing out a whole bunch of what I call ‘gimme letters,’ be they wonderful organizations or not,” said one care partner (CP, female).

“You don’t open them,” another participant agreed (PLWD, male). One care partner (male) chimed in that a return address from a reputable source is helpful, while another PLWD (male) added, “You want to play up the thing, this is medical, this is [the University]; this is helpful.”

We also asked whether we should address the materials (i.e., the mailing label) to eligible participants, their care partners, or both. Participants were emphatic that the PLWD should be identified and listed first, regardless of their stage of cognitive impairment. One participant (PLWD, female) said, “It does tick me off when I get left out of something that’s meant for me. Then I immediately go to, ‘I know you think I’m stupid, but don’t treat me like a kindergartener.’” Another care partner (female) agreed, saying:

Leaving him off […] would really piss me off, you know. Definitely, out of respect, it should be addressed to the person involved. […] Now, I will probably be the one to open it and read it to [my husband]; he would just, he’d hand it to me. But I definitely think that the person involved should be on it. Spouses or caretakers, that’s okay as a second, sure. Just respect the patient.

Through three focus groups, we learned a number of lessons that may be applicable to healthcare researchers and clinicians developing patient-facing education materials for PLWD. Perhaps the most important and overarching lesson is to use an approach that does not unintentionally convey assumptions about PLWD’s identity or autonomy. The assumptions can potentially be avoided in two key ways.

First, those developing materials should carefully consider the pros and cons of using visual representations of individuals chosen to represent the intended target audience. These representations may either not, in fact, reflect the actual participants, or the representations may conflict with how participants perceive themselves. As a result, participants may gain a negative first impression of the material that then makes them unlikely to engage with the written content (e.g., “Anyone below a certain age doesn’t even open it up”).

Secondly, both PLWD and care partners were clear that the material should be addressed to the person with cognitive impairment, even if that person might then ask their care partner to lead the decision-making. Ultimately, the focus groups clearly emphasized the importance of the PLWD remaining the explicit target of the information, and in a way that did not reflect societal stereotypes of what an aging person might look like. In addition to substantive feedback on formatting and content choices that would make written materials easier to engage with, our focus group participants also offered additional feedback regarding the tone of materials specifically designed for PLWD. While their initial reactions to materials designed to induce cognitive dissonance were telling, more research is needed to explore the balance between avoiding undue discomfort to a population that already feels vulnerable, while also provoking sufficient concern to motivate a potential behavioral change.

One of the most successful deprescribing interventions—and the basis of our adapted intervention—was EMPOWER, which used constructivist learning theory intended to affect change by introducing cognitive dissonance related to medication use. However, participants in our focus group described this approach as anxiety-inducing and “scary.” Generally, researchers or clinicians do not want to present information deemed scary, yet some degree of dissonance may be necessary to contribute to behavior change. Future work may be needed to understand whether and how theories of behavior change can apply to PLWD. Finally, separate from the PLWD response to the actual content, the visual presentation of the information may also present challenges in a population that is experiencing change in their visuospatial abilities.

This work does have some limitations. We did not gather information about the type, duration, or severity of the dementia, and participants were those who were interested in engaging in a focus group about these educational materials; therefore, our findings may not be generalizable to all dementia severities or subtypes. In addition, PLWD needed to have a care partner willing to participate (a close friend, romantic partner, or family member), and to be willing and able to join a remote, video call. Therefore, those PLWD with more severe disease or more limited social support or access to technology were under-represented. Furthermore, while our small sample size was appropriate for a qualitative exploration, we acknowledge that perspectives may vary by sociodemographic characteristics such as race, ethnicity, income and level of education, which represent an important area for future dementia research [ 30 ]. There was not always consensus among participants; sometimes solving one design problem creates a new one. While we tried to work from a majority model, the nature of a focus group may reward those people more willing to speak publicly and underrepresent the concerns of those who are more reticent to speak. However, the facilitator made efforts to compensate for this by soliciting additional input from quieter participants, explicitly seeking out points of agreement, disagreement, or clarification, and allowing pauses between speakers, rather than immediately launching into the next question. Finally, we offered to provide a final version of the brochure to focus group participants upon request; however, we did not provide a formal process for participants to continue providing additional feedback.

Overall, the feedback from our focus group participants was consistent with best practices recommended by existing scholars of dementia [ 27 , 28 ]: Materials should be concise and avoid jargon. The content should be relevant and accessible. The style and format should be clean and straightforward. Ample white space should be present, with simple, easy-to-read (sans-serif) fonts. One contribution from our audience was the importance of diversifying the face of dementia, with the understanding that dementia does not only befall those stereotyped patients we may conjure in our minds. In fact, while other scholars recommend use of images, and in particular photographs, our respondents said they’d prefer to have no photos rather than photos that fail to capture a diversity of experiences, thereby alienating their potential audience. Best practices also recommend avoiding images liable to misinterpretation—we learned this firsthand with our image of many pills, which some participants said they associated with suicide risk or overdose. This specific feedback would have been impossible to anticipate without speaking to PLWD themselves.

As the Alzheimer’s Society notes in their Tips for Dementia Friendly Documents [ 28 ], however, there is not a single format can meet everyone’s needs. Therefore, they advise getting feedback on people’s experiences with one particular document. The focus groups at the center of this study were an effort to do that. Ultimately, PLWD participating in our focus groups expressed enthusiasm for the opportunity to provide feedback. They welcomed the opportunity to contribute insights that may help researchers and clinicians who are developing PLWD-facing materials. In the end, they wanted to feel seen, heard and included. As the Alzheimer’s Society concludes: “Asking [PLWD] early on about how they like to have information and whether your documents are working for them, can be a great way to give them confidence to speak up and to show you are interested in making change to improve their experience where you can.”

PLWD-facing educational material should be addressed directly to PLWD, using plain, accessible language and clean, straightforward formatting. Approaches focused on deprescribing that introduce fear or anxiety were not welcome because many PLWD already perceive that they have a high burden of pharmacotherapy and already feel at risk.The study findings may hold relevance for other health-related educational materials aimed at PLWD, providing some inclusive design principles for individuals who may otherwise be excluded and treated inequitably within healthcare services. It will be important going forward to explore ways to create cognitive dissonance that will foster positive change in a population that is prone to anxiety about capabilities and can be easily overwhelmed with information. Furthermore, educational materials will likely need to be tailored to the dementia types and severity, as the type and degree of cognitive impairment will call for different approaches.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

Alzheimer’s disease

Alzheimer’s disease and Related Dementias

Central nervous system-active

Consolidated Criteria for Reporting Qualitative Research

Care partner

Dementia Engagement and Empowerment Project

Focus Group

IMbedded Pragmatic Alzheimer’s disease and AD-Related Dementias Clinical Trials

Health Insurance Portability and Accountability Act

Michigan Alzheimer’s Disease Research Center

National Council for Dementia Minds

Persons living with dementia

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Acknowledgements

This work was funded by the National Institute on Aging (NIA) of the National Institutes of Health under Award Number U54AG063546, which funds NIA Imbedded Pragmatic Alzheimer’s and AD-Related Dementias Clinical Trials Collaboratory (NIA IMPACT Collaboratory). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. We would like to thank our focus group participants, the National Council for Dementia Minds, and Joshua Chodosh, MD, MSHS.

This research was funded by a grant from the National Institute on Aging’s IMbedded Pragmatic Alzheimer’s disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory (U54AG063546).

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Charity M. Hoffman, Sarah E. Vordenberg, Molly Turnwald & Donovan T. Maust

Wayne State University, Detroit, MI, USA

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Ascension Health, Detroit, MI, USA

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All authors contributed to study concept and design. CH and DM drafted the manuscript, with critical revision by all authors. All authors approve this submission and are accountable for their contributions to the work.

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Correspondence to Charity M. Hoffman .

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Hoffman, C.M., Vordenberg, S.E., Leggett, A.N. et al. Insights into designing educational materials for persons living with dementia: a focus group study. BMC Geriatr 24 , 380 (2024). https://doi.org/10.1186/s12877-024-04953-y

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DOI : https://doi.org/10.1186/s12877-024-04953-y

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May 3, 2024

The Unequal Burden of Early Dementia on Black Americans and How We Can Change It

Black Americans face higher hurdles in diagnosis and treatment of frontotemporal dementia, the most common form of dementia for people under 60

By Ashley Andreou & Minali Nigam

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The first time many people likely ever heard of frontotemporal dementia (FTD) was in 2023 when actor Bruce Willis revealed the diagnosis, or this year when talk show host Wendy Williams did the same. A debilitating brain disease that can affect personality, behavior and language, it is the most common form of dementia for people under 60 years old.

Williams ran her own show for 13 seasons, before stepping down for her health in 2021; not until last February did she announce she has frontotemporal dementia. Her case, which played out in the public eye , highlights how this grim brain disease takes an especially hard toll on Black Americans.

FTD is a complicated and heartbreaking neurodegenerative disease. Aside from 40 percent of patients having a family history of the disorder and some common genetic mutations , its causes are largely unknown. It has no cure. Unlike other dementias, it afflicts people much earlier, typically in their 50s or 60s; it predominantly presents with either neuropsychiatric symptoms—including aggression, apathy and disinhibition—which is called the behavioral variant , and symptoms involving language comprehension, called primary progressive aphasia . The disease affects around 60,000 people in the U.S.

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The bizarre and painful reality is that patients’ physical state remains intact for the first few years of the disease, and—as their personalities and behaviors change —patients’ loved ones may feel like they're living with a stranger. The disease is often missed, or misdiagnosed as a mental illness, with on average, 3.6 years passing before an accurate diagnosis. In Williams’s case, innuendo about her sobriety made news.

TV Personality Wendy Williams attends BUILD Series at AOL Studios in New York City, January 11, 2016. Her diagnosis with FTD was announced in February of 2024.

Mark Sagliocco/WireImage/Getty Images

Although Willis and Williams were both recently diagnosed, the disease does not affect all communities equally. Racial health disparities exist in progressive forms of the disease. In September, research in JAMA indicated that Black individuals in the U.S. with frontotemporal dementia had a higher degree of severity and more significant functional impairment . Researchers also noted a higher frequency of delusions, agitation and depression in Black patients. Another study that spanned the U.S., Canada and the U.K. found that Black and Latinx people with FTD consulted more doctors and had to spend a longer amount of time before being correctly diagnosed. A complex interplay between social determinants of health (nonmedical factors that impact health), racial bias in diagnosis and cultural stigma likely drives these disparities.

The U.S. legacy of slavery and discrimination underpins the fact that Black Americans today are more likely to be living in poverty and uninsured. Unsurprisingly Black, as well as Latinx, patients also often lack access to quality health care . Socioeconomic inequity is a key social determinant of health, and Black patients may also present with more severe functional impairment consequent to an inability to afford care in the community leading to more rapid deterioration. The average out-of-pocket cost for patients with dementia is $61,522, which is 81 percent higher than the costs incurred by patients with heart disease or cancer. In addition, patients of color may mistrust the medical system, owing to fears stemming from past medical atrocities and the continued mistreatment of nonwhite patients. As a result of cost and mistrust, families may keep patients with FTD at home when subtler symptoms of memory impairment emerge, only seeking care once more progressive impairment and concerning symptoms, such as agitation and delusions, develop.

Moreover, sociocultural beliefs in some Black communities—in particular the idea that memory loss is a normal part of aging and a tradition of collective self-reliance (borne from a history of racial adversity)—and mental health stigma may delay seeking treatment. As a result, Black patients may be less likely to present to health care settings and receive standard diagnostic tests: neurological and psychiatric evaluations, brain imaging and genetic analysis.

Physician bias, which also delays accurate diagnosis, might also explain the higher level of impairment and more severe symptoms upon diagnosis. Consequent to physician bias, Black and Latinx individuals with FTD are three to four times more likely to be misdiagnosed with a psychotic disorder. In turn, FTD patients may not receive a further workup to identify their brain disease. In addition, rating scales, such as the Frontotemporal Lobar Degeneration Behavior and Language Domains, predominantly rely on clinician and caregiver ratings. Those may also be confounded by implicit bias when interpreting symptoms and developing screening tools. Gross underrepresentation of minoritized populations in medical research studies impedes capturing accurate epidemiological information and data about them. For instance, in the abovementioned JAMA study , Asian and Black individuals comprised only 2.4 percent and 2.5 percent, respectively, of the people studied.

Awareness of FTD matters because timely diagnosis enables occupational and physical therapy , caregiver education and psychiatric care , all of which can improve quality of life and prevent further functional decline, behavioral issues and medical complications. Early diagnosis can also aid in emotional healing, helping people process the diagnosis through contextualizing the neuropsychiatric changes.

University of California, San Francisco, researchers published preliminary findings in early April about an NIH-funded smartphone app that they developed for early detection of FTD. Increased awareness, combined with the development of accessible screening tools like this app, could decrease the disease’s inequitable impacts. In addition, clinical research should expand diagnostic criteria to reflect diversity, which starts with improving the diversity of people enrolled in research.

Doctors must learn how to provide culturally informed care, counteract diagnostic biases and recognize FTD. Increasing research and development of data-driven diagnostic tools, including biomarkers and new genetic tests, may also address the diagnostic bias exacerbated by screening tools.

Fundamentally, policy makers and health care systems must address inequitable access to health care and the mistreatment that builds mistrust. Wendy Williams is one of the many people battling FTD, and it is to be hoped that her story will raise awareness and help mitigate the racial disparities that may increase suffering in an already devastating disease.

This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.

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Study shows 60% of women with disabilities view cannabis as a 'harmless' drug

by Florida Atlantic University

A growing number of states and territories in the United States have legalized medical and recreational cannabis use. As such, recreational cannabis has been associated with a lower perception of risk of harm in the general U.S. population.

However, in women of childbearing age , evidence has shown that cannabis use may increase the risk of adverse reproductive and perinatal health outcomes. Furthermore, research on the perception of risk from using cannabis among vulnerable populations such as those with disabilities is lacking.

Using data from the 2021 National Survey on Drug Use and Health, researchers from Florida Atlantic University's Schmidt College of Medicine conducted a study to assess the perceived risk of harm associated with weekly cannabis use in a sample of 20,234 women ages 18 to 49 by disability status.

Disabilities included sensory (hearing and vision), cognitive (difficulty remembering and concentrating) and daily activities (e.g., walking and self-care).

Researchers included race/ethnicity, age, marital status, federal poverty level , past-year health insurance gap, and whether the state of residence legalized medical cannabis. They also assessed perceived overall health status, past-year major depressive episode, past-month tobacco/ alcohol use , and illicit drug use .

Results of the study, published in the journal Cannabis and Cannabinoid Research , showed that approximately 60% of women with disabilities who used cannabis in the past 12 months perceived no risk of harm from weekly cannabis use. A significantly higher percentage of women with any disability perceived no risk associated with weekly cannabis use (37.9%) compared to those with no disabilities (26.1%).

More than one-quarter (27.4%) of women perceived no risk of harm associated with weekly cannabis use. Overall, perceiving no risk associated with weekly cannabis use was evident among women ages 21 to 29 (34.4%), those who were never married (32%), were non-Hispanic Black (32.2%), living in poverty (31%), perceiving their health as fair/poor (35.1%), and experienced a past 12-month major depressive episode (36.4%).

The likelihood of perceiving no risk also was higher among women using tobacco and those using both alcohol and tobacco.

"Given women's attitudes toward cannabis as a harmless drug, the increasing rates of its use among those with disabilities, and the potential adverse health outcomes, it is imperative to monitor and understand perceptions of risk of harm from cannabis use among women with disabilities," said Panagiota "Yiota" Kitsantas, Ph.D., senior author, professor and chair, Department of Population Health and Social Medicine, FAU Schmidt College of Medicine.

Overall, women with disabilities and cannabis use in the past 12 months had 2.9 times higher odds of perceiving no risk associated with weekly use of cannabis compared to women without any disability and no cannabis use.

The odds also were higher for those who did not have a disability but used cannabis in the past year, which indicates that cannabis exposure, in general, may increase a woman's likelihood of not perceiving any harm to her health from weekly use.

Exposure to cannabis use during pregnancy has been associated with adverse birth outcomes including low birth weight , preterm delivery, small for gestational age, admission to the neonatal intensive care unit and infant death. Cannabis use also may affect sex hormones essential to fertility and the timing of ovulation in reproductive age.

"As legalization of cannabis use becomes more prevalent across states, attitudes regarding the risk of cannabis use are changing," said Lea Sacca, Ph.D., co-author and an assistant professor in the Department of Population Health and Social Medicine, FAU Schmidt College of Medicine.

"A multi-pronged approach to address cannabis use among vulnerable populations such as women of childbearing age with disabilities will require clinical guidance, provider and patient education and evidence-based public health programs."

Although research evidence shows that residents in states where cannabis is legal are more likely to believe that cannabis has benefits than those living in states with just medically legal cannabis or nonlegal states, this study suggests that living in a state that has legalized medical cannabis was associated with a decreased likelihood of perceiving no risk from using weekly cannabis relative to states with no legalized use of medical cannabis .

"There is an urgent need for effective cannabis screening and subsequent dissuasion of cannabis use for reproductive-aged women at risk of substance use. Obstetrician-gynecologists can play an important role by informing patients about healthy behaviors and encouraging long-term adoption as well as identifying patients abusing drugs for proper referral to addiction treatment professionals," said Kitsantas.

"Importantly, health policies should include holistic programs to proactively educate the population, pharmacists, medical and public health professionals of the associated benefits and risks of cannabis use among reproductive-aged women with disabilities."

The study's co-author is Salman M. Aljoudi, a health data analyst, a Ph.D. researcher and an instructor at George Mason University.

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