Corticobasal Degeneration (CBD) is an FTD disorder primarily affecting movement. The earliest motor symptoms may be apraxia, the inability to use the hand or arms to perform a movement despite normal strength. Other symptoms can include muscle stiffness and difficulty swallowing. In addition to motor symptoms, people with CBD may exhibit changes in personality and behavior. CBD may also cause challenges related to language and communication, particularly as the disease progresses.
What is CBD?
Corticobasal Degeneration (CBD) is an FTD disorder primarily affecting movement. The earliest motor symptoms may be apraxia, the inability to use the hand or arms to perform a movement despite normal strength. Other symptoms can include muscle stiffness and difficulty swallowing. In addition to motor symptoms, people with CBD may exhibit changes in personality and behavior. CBD may also cause challenges related to language and communication, particularly as the disease progresses.
What Causes CBD?
CBD is caused by loss of neurons and abnormal amounts or forms of proteins in the brain. In most cases, the cause of CBD is unknown although people with a family history of CBD may be at a higher risk of developing CBD. Biomarkers (including blood and spinal fluid) and imaging (MRI and position emission tomography (PET)) can help clinicians understand what causes CBD.
MGH CBD Program
The MGH FTD Unit’s CBD program, under the direction of Brad Dickerson, MD, offers a cross-discipline collaborative approach to caring for people living with CBD 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 CBD 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 CBD 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 CBD. If you want to learn more about the MGH CBD program, you may email the MGH FTD Unit at MGHFTDUnit@mgh.harvard.edu.
Highly Specialized Clinical Evaluation
Our team has over a decade of experience in diagnosing and caring for individuals with CBD. 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 physical and occupational therapists who have familiarity treating CBD 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 Research UK, Rare Dementia Support, Cure PSP and the PSP Association.
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 CBD 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, and spotlights relevant topics to improve quality of life. Email mghftdunit@mgh.harvard.edu 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 CBD. 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 CBD. To learn more, please email mghftdunit@mgh.harvard.edu.