Frontotemporal disorders are forms of dementia caused by a family of brain diseases known as frontotemporal lobar degeneration (FTLD), also known as frontotemporal dementia (FTD) or Pick's disease. These disorders result from damage to neurons (nerve cells) in the brain's frontal and temporal lobes. Over time, these changes impair thinking, language, and behavior. Symptoms can include uncharacteristic behaviors, problems regulating emotions, speech difficulties, and problems with walking and other basic movements. FTD predisposes an individual to physical complications such as pneumonia, infection, or injury from a fall. Average life expectancy is 7 to 13 years after the start of symptoms. Frontotemporal dementia is the most common dementia for people younger than 60.
What are the Different Types of FTD?
Research has revealed different forms of frontotemporal dementia, based on the pattern of brain atrophy and the first symptoms to emerge.
- Behavioral variant FTD
- Primary Progressive Aphasia:
- FTD-ALS
- Corticobasal Syndrome
- Progressive Supranuclear Palsy
What Medications are Helpful for FTD?
Today, there are no treatments available to slow or stop the progression of the disease. However, there are important steps that you can take to preserve and maximize the quality of life. Learn about the growing number of interventions that can help with managing FTD symptoms [theAFTD.org].
What Causes FTD?
In about a third of all FTD cases, the disease is inherited. Genetic counseling and testing are available for individuals with family histories of frontotemporal degeneration. There are no known risk factors for any frontotemporal degeneration except for a family history or a similar disorder.
Read about FTD and Genetics [theAFTD.org]
How do I Coordinate FTD Care?
It is important for you and your care partner to identify a team of experts who can help with coordinating care and with the legal, financial, and emotional challenges brought on by this disease. If you are managing the health care needs of a loved one with FTD, the following information can help guide you:
- Creating Your Care Team is a guide from the AFTD for setting up care and navigating the challenging decisions following an FTD diagnosis.
- The Memory Navigator Consultation Services: The Memory Navigator service at the Memory Hub offers personalized guidance through free 30-minute appointments with a care consultant. Get support with dementia or caregiving topics, including FTD information and referrals to community resources. Discuss what you're looking for, and discover what may be available in your area. Appointments are available in person and via Zoom or phone.
Resources
- The UW MBWC Clinic, UW Medicine, Harborview
- The UW ALS Multidisciplinary Clinic, UW Medicine
- The UW Movement Disorders Clinic, UW Medicine
- The UW Speech and Hearing Clinic - Speech/Language Pathology People interested in learning about the PPA speech language services and conversation groups at UW Speech and Hearing Clinic can email the clinic at shclinic@uw.edu or call 206 543-5440.
The Association for Frontotemporal Degeneration
- AFTD HelpLine
- Checklists for Families and Physicians: The AFTD developed checklists to help identify red flags for three common clinical subtypes of FTD. Checklists are available in different languages.
The Alzheimer's Association can help you learn more about Alzheimer's and other dementias and find local support services. Call our 24/7 Helpline at 800.272.3900.
- Alzheimer’s Association - Spokane Office For more information, call: 509.456.0456. Email: InquiryWa@alz.org
- Alzheimer’s Association - Lynnwood and Tukwila Offices For more information, call: 206.363.5500. Email: InquiryWa@alz.org
CurePSP is a nonprofit organization dedicated to the awareness, care and cure for PSP and other neurodegenerative diseases. Call 800.457.4777 or email info@curepsp.org for more information and support.
PPA and Speech Language Resources [MBWC]
The Social Security Administration (SSA) has a "compassionate allowance" program in which workers diagnosed with FTD, PPA or ALS can qualify for Social Security disability benefits. You can also call the SSA at 800.772.1213.
- Find FTD Support Near You [AFTD]
- FTD Caregiver Virtual Support Group [MBWC Memory Hub]: A virtual support group for people caring for a loved one with frontotemporal degeneration. Every second Wednesday of the month, 5:30 pm PT - 7 pm PT, on Zoom. Offered by the UW MBWC and the AFTD. View Support Group Flyer [PDF]
- PPA Together Group [MBWC Memory Hub] Do you or a loved one live with primary progressive aphasia (PPA/PPAOS)? Come explore a group just for you! We meet monthly, on Wednesday afternoons. A free event. Offered in partnership by UW Department of Speech and Hearing Sciences, UW Memory and Brain Wellness Center, UW Alzheimer's Disease Research Center.
Staying Safe with Memory Loss [MBWC] (Relevant for all forms of dementia)
- How to Participate in Research & Clinical Trials at the UW ADRC [ADRC]
- If you are interested in opportunities for individuals at risk for FTD, learn about the longitudinal research cohort ALLFTD [ADRC]
- FTD Disorders Registry
- Search Clinicaltrials.gov [NIH]
Este nuevo PDF [AFTD) ofrece una guía sobre todas las formas de la DFT, la demencia más común para personas menores de 60 años.
FTD’s estimated U.S. prevalence is around 60,000 cases, and many in the medical community remain unfamiliar with this condition. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.
- For Health Professionals [theAFTD.org]
- FTD Disorders Registry
Selected Didactics Sessions (Slides, Recordings, and Resources) from MBWC's Project ECHO Dementia. ECHO Dementia is a learning model in which front-line care providers from around WA State meet in a web-based virtual conference room with an interdisciplinary panel of experts in memory loss and dementia.
- Genetic Testing & Counseling in Dementia: Guidance for Primary Care Providers Rachel Westman, MS, CGC, Genetic Counselor, Genetic Support Foundation
- Advance Care Planning Barak Gaster, MD, FACP
- Resources for Young Onset Dementia. Slides | Video Presenter: Patti LaFleur M. ED, CDP representing Lorenzo's House
- Genetic Neurodegenerative Diseases. Presenter: Suman Jayadev, MD, Arthur Krause Professorship for Neurogenetics Research, UW School of Medicine. Slides | Video