"I can direct things but I can't write. My memory is going, so I struggle for words."
-Terry Jones, actor, writer, comedian, screenwriter, film director, historian, Monty Python comedy team. 1966-2016, passed away from Frontotemporal Dementia.
Frontotemporal dementia (FTD) - also referred to as "Frontotemporal Degeneration" or "Pick's Disease" - is the most common degenerative brain disease in people under the age of 60. Often striking people in their prime, FTD is characterized by a progressive degeneration of the frontal portions of the brain, the regions responsible for language and behavior. Unlike Alzheimer’s, there is typically not a loss of reasoning, orientation or memory. However, planning, decision making and speech are affected, and patients often seem less caring or concerned about their family and friends.
There is an umbrella of variants, making the symptoms from person to person quite diverse. Over the course of the disease, FTD corrodes the brain which results in varying symptoms such as the ability to behave appropriately, make judgments, communicate (read, write, talk, understand spoken language), and carry out daily activities.
FTD onset is most common between the ages of 40 and 60. However, it has occurred as early as 20s and as late as 80s. This often creates a larger economic impact to families as it occurs while our loved ones are still working/going to school, raising a family, etc.
IS IT GENETIC
Sometimes, but not always. FTD can be broken into two main categories: Sporadic or Familial. Sporadic is when only one known person in the family has had it. Familial FTD occurs when multiple people in a family across back-to-back generations have FTD or a related condition. About 10-15% of familial can be further broken down into known genetic or an "illness causing gene mutation."
The three common gene mutations known to cause FTD are C9ORF72, MAPT or GRN. Tests can be done for these mutated genes. It is extremely important any gene testing is done with careful consideration and under the care of professionals.
IS THERE A CURE
No, at this time there is no cure or treatment to slow or stop the progression. However, clinical trials are finding promising results for treatments. There are 1000s of researchers and doctors hard at work to find a cure or treatment. There is also an increasing number of other interventions (medical and non medical) to help manage FTD.
PREVENTATIVE SELF-CARE OPTIONS
If you are recently diagnosed or a caregiver, the more assistance you have, the better. Your needs will evolve. See External Resources below or our Caregiving Support Page for varying support opportunities, checklists and resources.
Research shows lifestyle habits can reduce cognitive and physical decline, thereby reducing the risk of FTD and other diseases which result in dementia. You have a lower risk if you keep your brain and heart active as you age (ex: learn a new skill, learn a language, play musical instruments). You can also decrease your risk of onset with:
- Regular physical exercise
- Heart healthy eating
- Social interactions, community and intellectual stimulation such as learning a new hobby or language
- And last, but not least - regularly getting a good night's sleep.
For those diagnosed, physical, speech and occupational therapy, while it may not slow the progress, may help manage symptoms and quality of life.
Knowledge and Support Resources:
Note: Links/URLs are great when they work, a huge annoyance when they don’t. They may update faster than we can catch them. To help keep up, in addition to the link, we’ve included the description of the location of the information to assist with good old fashioned web searching.
For disease overview and information:
- Frontotemporal dementia | The Bluefield Project to Cure FTD
- Memory and Aging Center, UCSF, FTD
- The Associations of Frontotemporal Degeneration (AFTD)
- The FTD Registry: https://ftdregistry.org/ftd-resources - keep updated on all of the research opportunities
- FTD HOTLINE: HelpLine at 866-507-7222
- UCSF Memory and Aging Centers: A Patient’s Guide to FTD
For caregiving support:
- Lorenzo House - support for YOUNG dementia and youths
- PDF: A Guide for Managing a New Diagnosis, by AFTD.
- The Family Caregiver Alliance, has a "navigator" for finding support across the US. https://www.caregiver.org/family-care-navigator
- FTD Talk: A community for information and support
- Remember Me FTD Podcast - hear about and connect with other FTD families
- HFC - Respite Grants and Support Groups
- Facebook Support Groups - FB groups such as Frontotemporal Dementia (FTD) Support Group Australia (and beyond!) provide the opportunity to connect with other families going through the same experience and can offer advice, support and an ear.Research and clinical trial information: https://Clinicaltrials.gov
DID YOU KNOW… THREE FAST FACTS
- Is the most common case of dementia in people younger than 60.
- Affects the frontal and temporal lobes of the brain; initially leaving other areas of the brain untouched.
- Is what impacted the life of famous Monty Python actor, Terry Jones. Read more about his story here.