Frontotemporal Disorders are a group of progressive neurological conditions. These conditions may result in a gradual decline in behavior, language or other abilities, and often affect individuals in their 50’s and 60’s.
What is FTD?
Frontotemporal Dementia is the name given to a number of brain disorders that primarily affect the frontal and temporal lobes of the brain. They are usually slowly progressive and may affect various aspects of a person’s behavior, language, emotions, memory, or other abilities, and often affect individuals in their 50s and 60s.
Frontotemporal disorders include:
- Behavioral Variant FTD
- Primary Progressive Aphasia (PPA)
- Posterior Cortical Atrophy (PCA)
- Corticobasal Degeneration (CBD)
- Progressive Supranuclear Palsy (PSP)
- Young-Onset Alzheimer’s disease
What Causes FTD?
FTD is caused by loss of neurons and abnormal amounts or forms of proteins in the brain. In most cases, the cause of FTD is unknown although people with a family history of FTD may be at a higher risk of developing FTD. Biomarkers (including blood and spinal fluid) and imaging (MRI and position emission tomography (PET)) can help clinicians understand what causes FTD.
MGH FTD Program
The MGH FTD Unit’s FTD program, under the direction of Brad Dickerson, MD, offers a cross-discipline collaborative approach to caring for people living with FTD 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 FTD 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 FTD 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 FTD. If you want to learn more about the MGH FTD 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 FTD. 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. Specifically, these specialties include occupational therapists who have familiarity treating FTD 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 Association for Frontotemporal Degeneration, 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 FTD and what to expect as the disease progresses. Learn more about MGH FTD Unit Caregiver Support Services.
From Care to Cure Newsletter:
The MGH FTD Unit is committed to providing connections with relevant information, helpful resources, and support within our community of patients and care partners. Each issue highlights current research projects and publications, authentic caregiver and patient voices, community events, and spotlights relevant topics to improve quality of life. Email [email protected] to sign up for our online newsletter today.
Participation in Research
Our team is conducting several ongoing research studies aimed at better understanding the clinical, cognitive, and neurological features of FTD. 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 FTD. 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.