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It Is Possible to Get Dementia in Your 40s? Here’s What Experts Say




Sometimes if you notice a change in personality of someone under 60-years old you may wonder why. It could be a disease that is significantly underdiagnosed and is a common type of Dementia.



You may think dementia only happens to people over 60 – but a rare form of the health condition is known to strike people in their 40’s and 50’s.


Frontotemporal dementia (FTD) is a rare, rapidly progressing neurodegenerative disease impacting people in their 40’s and 50’s that causes nerve cells in the brain to lose their ability to function over time. In fact, it’s the most common form dementia that is impacting people under 60.


FTD currently affects 50,000 to 60,000 people in the U.S., but it is a disease that is significantly underdiagnosed. Because people living with FTD may display indifference or behave inappropriately in social situations, it’s often misdiagnosed as mental illness, considered a midlife crisis, or a different form of dementia.



While there is no cure, genetic testing is a way to bring hope to people and families living with FTD. Genetic testing can also help assess risk and may allow for eligibility in clinical trials. Other than genetic testing, participation in clinical trials is another way to bring hope to those impacted by FTD, by potentially leading to more meaningful future treatments.


September 25 – October 2 marks World FTD Awareness Week, a time to highlight this rare disease and the experiences of patients, families, and caregivers facing this diagnosis.


Dr. Andrea Bozoki, Board-certified neurologist and division chief and professor of memory and cognitive disorders at University of North Carolina at Chapel Hill; along with Susan Dickinson, CEO of the Association for Frontotemporal Degeneration (AFTD) joined me to share more about the most common form of Dementia among people under 60.






Dr. Andrea Bozoki currently leads the Division of Cognitive and Behavioral Neurology at UNC Chapel Hill. She is a fellowship-trained geriatric and cognitive neurologist with over 25 years’ experience as a sub-specialist, caring predominantly for patients with Alzheimer’s disease and other neurodegenerative causes of dementia. In her role as a Neurology Division Chief, she has developed and trained a clinical team that cares for over 800 individuals with dementia annually. She is also an expert on the use of imaging biomarkers for the evaluation of individuals with cognitive decline, and has directed numerous clinical trials targeting treatment of mild cognitive impairment and various dementia populations.


From 2001-2019, she was on the faculty of Michigan State University, where she was a co-investigator and Executive Board member of the cross-state collaborative Michigan Alzheimer’s Disease Research Center. Since arriving at UNC in 2020, she has taken a leadership role for the Outreach, Recruitment and Engagement Core of the newly NIH funded UNC-Duke Alzheimer’s Disease Research Center and the statewide North Carolina Registry for Brain Health. She also heads the UNC site of the national NIH funded ALL-FTD project focusing on frontotemporal dementia, and a similar longitudinal consortium project of individuals with Lewy Body Disease. Through her work on these projects, Dr. Bozoki has become an outspoken champion for the importance of participating in research, which means talking not only to patients but to their families, caregivers and communities.



Susan Dickinson, MSGC, AFTD Chief Executive Officer (CEO), joined AFTD in February 2008. A genetic counselor, she brings more than three decades of experience facilitating communications among lay, scientific, and medical communities. Under her leadership, AFTD has expanded dramatically in scale and impact, from a $400,000 organization with a part-time staff of three to a $10 million+ organization with 30 full-time staff.


During her tenure, AFTD has expanded programs to meet and advocate for the needs of FTD families and invested in specific strategies to advance FTD research and drug development, including four multi-year, multi-million dollar research initiatives targeting FTD diagnosis and treatment. She holds an MS in genetic counseling from Arcadia University and a BA in biology and psychology from Swarthmore College.



Wife. Mom. Believer. Writer. Advocate.

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