Young-Onset Alzheimer’s Disease (YOAD) is the presence of Alzheimer’s Disease in individuals younger than 65. The symptoms of YOAD can include changes in behavior and personality as well as memory impairment.
What is YOAD?
Young-Onset Alzheimer’s Disease (YOAD) is the presence of Alzheimer’s Disease in individuals younger than 65. The symptoms of YOAD can include changes in behavior and personality as well as memory impairment.
What Causes YOAD?
The underlying cause of YOAD is Alzheimer’s disease. Lumbar punctures conducted in the clinic as well as specialized positron emission tomography (PET) scans can show abnormal accumulation of amyloid and tau proteins that form the plaques and tangles seen in Alzheimer’s disease, thus confirming the diagnosis. It is not well understood why most cases of YOAD appear at such a young age. However, researchers have pinpointed several rare genes that directly cause Alzheimer’s. People who inherit these rare genes tend to develop symptoms in their 30s, 40s and 50s. YOAD is often under-recognized or misdiagnosed since patients and doctors aren’t thinking about Alzheimer’s disease in younger patients.
MGH YOAD Program
The MGH FTD Unit’s YOAD program, under the direction of Brad Dickerson, MD, offers a cross-discipline collaborative approach to caring for people living with YOAD as well as for their families. Our patients will receive a highly specialized clinical evaluation, which can diagnose or provide a second opinion confirmation of the YOAD diagnosis. We also facilitate referrals to appropriate specialists and resources designed to optimize quality of life in line with evidence-based treatment guidelines. We are committed to supporting families through their whole journeys with this disease and as such, we offer comprehensive support and education about living with YOAD and how to plan for the future. Our patients will also have the opportunity to participate in research designed to better understand and develop future treatments for those living with YOAD. If you want to learn more about the MGH YOAD program, you may email the MGH FTD Unit at [email protected].
Highly Specialized Clinical Evaluation
Our team has over a decade of experience in diagnosing and caring for individuals with YOAD. At your initial clinic appointment, you will be evaluated by a team of neurologists, neuropsychologists, speech-language therapists, and caregiver support specialists. These evaluations will include a detailed clinical interview with patients and family members, as well as neurocognitive testing, with the aim of guiding diagnosis and treatment.
Referrals and Educational Resources
In the event that our patients would benefit from other specialty clinical services, we facilitate these referrals and work closely with these providers to optimize clinical care. When appropriate, patients can be referred to the MGH Alzheimer Therapeutics Program to determine whether they are candidates for available disease modifying treatments for Alzheimer’s disease. In addition, patients can be referred to physical and occupational therapists who have familiarity treating YOAD patients, as well as speech and language therapists who can provide cognitive and language therapy to optimize cognitive functioning in the earlier stages of the disease.
We also suggest reviewing informational websites such as the Alzheimer’s Association, the Alzheimer’s Society, the Alzheimer’s Research UK, Rare Dementia Support, and the Alzheimer’s Foundation of America.
Support and Education
MGH FTD Unit Caregiver Support Services
Our team of caregiver support specialists can meet with your family to identify goals of care, establish a person-centered care plan, and connect you to community resources. We can also provide education specifically about the YOAD syndrome and what to expect as the disease progresses. Learn more about MGH FTD Unit Caregiver Support Services.
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Participation in Research
Our team is conducting several ongoing research studies aimed at better understanding the clinical, cognitive, and neurological features of YOAD. Study participation generally includes detailed neurocognitive testing and comprehensive clinical interviews of the participant and caregiver experience. Neurocognitive testing is currently being administered remotely via Zoom video conferencing technology and may transition to in-person testing at the Charlestown Navy Yard in the future. Additional imaging evaluations (MRI or PET scans) may also be available for patients who are appropriate. All participants will be reimbursed for parking if applicable and will be monetarily compensated for the testing session whether remotely or in person. Participants will have the opportunity to access educational and support resources to better understand how to live with the diagnosis of YOAD. To learn more, please email [email protected].
We are always looking for individuals who would like to participate in our efforts, whether they be patients, family members, interested individuals from the public, potential donors, other health care professionals, or other researchers.