Connections for support, resource referral and community partners. Education to manage communication, symptoms and challenging behaviors for caregivers of loved ones with Frontotemporal Dementia (FTD), Alzheimer’s Disease (AD) and dementia.
FTD Information
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. Although there are a growing number of helpful resources to assist people in learning about these disorders, it is important to recognize that not all of the information that is usually described will typically apply to every individual. That is, each person’s symptoms usually include only some of the list of symptoms described.
MGH FTD Unit YouTube Channel
Our clinical research team is committed to empowering our community with information to navigate life lived with a dementia diagnosis. We know how busy your lives are. To make these educational resources easily accessible, we have launched an MGH FTD Unit YouTube Channel. Subscribing is free! We look forward to connecting with you online, building community and knowledge, together.
From Care to Cure Podcast
The MGH FTD Unit is launching From Care to Cure, a podcast about frontotemporal disorders. The first season will feature Dr. Brad Dickerson, renowned neuroscientist and director of the MGH FTD Unit, introducing our clinical research program, explaining what FTD is and examining the process of diagnosis. The podcast will feature the voices of our clinical research team and community experts as they discuss key topics such as care care planning, symptom management and available treatments. New episodes will drop monthly. Please follow and share with family and friends.
Web Resources
We also perform a variety of research that we hope will contribute to a better understanding of these disorders, earlier and more precise diagnosis, better prognostication and monitoring, and ultimately treatment.
- Association for Frontotemporal Dementia
- Primary Progressive Aphasia information at Northwestern University
- FTD information at UCSF
- FTD Research Group – includes a practical guide to caring for patients with younger onset dementia
- National Aphasia Association
- Cure PSP: Society for Progressive Supranuclear Palsy
- Alzheimer’s and Related Disorders Association
- Alzheimer’s Association Posterior Cortical Atrophy (PCA)
- Alzheimer’s Research UK Posterior Cortical Atrophy (PCA)
- Rare Dementia Support Posterior Cortical Atrophy (PCA)
- Posterior Cortical Atrophy (PCA) Blog
- We Move – movement disorders society – this link leads to a page on Corticobasal Degeneration
- Consensus document on frontotemporal dementia in ALS
- Hodges Frontotemporal Dementia, 2nd Edition, Edited By: Bradford C. Dickerson
- The Hadley Center – offers free practical help and education to anyone with a visual impairment
- Roon is an online platform dedicated to providing accurate medical information for a variety of conditions, including dementia. Roon is an easy to navigate source of expertise and features numerous videos about FTD and related disorders. Each video is 3-5 minutes so Roon is perfect when you have just a moment to learn.
The MGH FTD Unit aims to develop better knowledge about and diagnosis and treatment of all forms of FTD and related focal dementia syndromes. The PPA Program aims to better understand and treat primary progressive aphasia syndromes using existing technologies (including speech therapy) and by developing new diagnostic and treatment technologies.