About

Frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior and language.

In frontotemporal dementia, portions of these lobes atrophy or shrink. Signs and symptoms vary, depending upon the portion of the brain affected. Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use and understand language.

Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer’s disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer’s disease, typically between the ages of 40 and 70. (adapted from the MayoClinic)

The Association for Frontotemporal Degeneration (AFTD) is the biggest FTD advocacy organization and their website has extensive information for those living with FTD, those caring for loved ones with FTD, healthcare professionals and more. This video PSA gives a great 30 second introduction to those unfamiliar with the disease and an overview of the resources the AFTD has to offer:

They also have a dedicated website for children and teens of affected parents: http://www.aftdkidsandteens.org/

One of the most valuable resources for people who are affected by this disease is others who are also dealing with this experience. Click here to find FTD caregiving support groups in your area.

FTD Resources

The Association for Frontotemporal Degeneration  

The Bluefield Project to Cure Frontotemporal Dementia

National Institute of Neurological Disorders and Stroke (NINDS) 

Caregivers

Family Caregiving Alliance 

FTD Caregivers Support Group at the Alzheimer’s Association, NYC 

Frontotemporal Dementia Support Group 

Research and Medical Centers

The Taub Center at Columbia University 

University of California, San Francisco (UCSF) Memory and Aging Center 

University of California, Los Angeles (UCLA) Behavioral Neurology Clinic

The Penn FTD Center

Massachusetts General Hospital Frontotemporal Disorders (FTD) Unit 

Frontotemporal Dementia (FTD) and Young-Onset Dementias Clinic at Johns Hopkins University

FTD in the News

NIH Press Release, October 23, 2014: “NIH announces grants for frontotemporal degeneration research”

“The National Institutes of Health will award three large, five-year projects on a specific form of dementia, known as frontotemporal because of the areas of the brain that are affected. The projects, funded by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS), National Institute on Aging (NIA) and the National Center for Advancing Translational Sciences (NCATS), announced today total more than $5.9 million for 2014.”

“‘The grants cover a wide spectrum of FTD research, from fundamental discoveries of the genetics behind this disorder to testing potential therapies in patients. We hope that these projects will provide answers and new avenues of treatment for this devastating condition,’ said Walter Koroshetz, M.D., acting director of NINDS.

‘The projects aim to advance our understanding of frontotemporal degeneration by improving diagnosis, identifying preventive strategies and providing new insights into the genetics underlying this complex disorder,’ said Margaret Sutherland, Ph.D., program director at NINDS.”

“‘These multicenter, multi-disciplinary projects will enable scientists to combine their areas of expertise to design novel approaches for FTD research, with the ultimate goal of providing treatments to more patients more efficiently,”’said Pamela McInnes, D.D.S., M.Sc.(Dent.), deputy director of NCATS.”

Next Avenue, January 13, 2014: “From Bizarre Behavior to Dementia Diagnosis” by Dan Browning

“Yet in 2011, Liz seemed to turn on all of us. She didn’t lift a finger to prepare for Nathan’s high school graduation party. She refused Elsa a ride to an academic award ceremony, telling her to ride with me, her “favorite.” She complained to nearly everyone about our lack of intimacy but seemed to recoil at my touch. She spent all of her free time — and unbeknownst to me, about $12,000 — recording a CD of her original music, “Finally!” (In retrospect, I’m grateful that she did such a fine job.)”

“We slogged through the counseling, with Liz showing little interest in it. Then, right before her family’s 2012 reunion in July, Liz got fired from her accounting job. Her boss said Liz was a beloved employee, but she’d been swearing a lot at work and fighting with coworkers. She refused to make collection calls, which was always part of her duties, and could no longer balance the books, her primary function. She didn’t respond to repeated warnings over the course of a year.”

“You’re going to need help,” she said. She gave me a copy of the medical report along with some materials listing social service agencies and nonprofit groups that could provide more information.

What she meant by help is what I’ve come to understand over the past year and a half. Help safeguarding our home. Help finding daycare for a now 52-year-old woman who needs 24-hour oversight but remains as active as a toddler. Help protecting an outgoing woman whose dementia has made her a danger to herself. Help finding money to cover her care. Help so that our children could understand their mother’s initial hostility and worsening behaviors.  And help with endless hours of paperwork as I try to do a demanding job and care for Liz, my disabled son and a daughter starting college.”

The Atlantic, January 2014: “A Lesser-Known Dementia That Steals Personality” by Erika Hayasaki

“Frontotemporal dementia patients with the greatest deterioration in the “affiliation network,” (involved in motivating a person to connect with others and generating rewarding feelings during social interactions) exhibited the most severe social and emotional detachment, and patients with the greatest damage to the “aversion network” (involved in detecting and avoiding untrustworthy or threatening individuals) became more willing to trust strangers, and in some cases gave away private personal information despite negative consequences.”

“What it steals are the things we value most as human beings. The desire to tell our family we love them, the ability to control our behavior, the very essence of who we are—our personality,” said Susan Dickinson, executive director of The Association for Frontotemporal Degeneration, a national nonprofit organization based in Pennsylvania.”

“The symptoms are often wrongly blamed on alcoholism, depression, menopause, mid-life crises, stress, or schizophrenia, and patients can go through years of negative tests for other ailments like cancer, strokes, and syphilis before learning the truth about what is actually wrong. People living with frontotemporal dementia, are unaware that they have even changed. But for loved ones, sometimes it’s like living with a stranger.”

“When she was first diagnosed, Kathy didn’t want to know about what would eventually happen to her personality, brain, or body. She did not want to read about frontotemporal dementia, and she never did. She didn’t realize she was losing precious parts of her character, and there was a comforting relief in that for her daughters. It became the family’s burden instead.”

New York Times, May 2012: “When Illness Makes a Spouse a Stranger”  by Denise Grady

“Although it was first recognized more than 100 years ago, there is still no cure or treatment, and patients survive an average of only eight years after the diagnosis”

“It is perhaps even more devastating, because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy or bizarre personality changes. It is thought to afflict at least 50,000 to 60,000 people in the United States.”

“The last five years have been wrenching and often lonely. Michael was the love of her life. When she married him, her sister asked, “How does it feel to hit the jackpot?” In more than 30 years of marriage, she never heard him say an unkind word about anyone. He was an engineer, lectured at conventions, did volunteer work, belonged to a history book club, ran marathons. Now he can no longer speak, read, write or walk.”

“Many find that friends and family pull away. Nearly all grapple with whether and when to take away car keys, give drugs to blunt aggression, hire a health aide or put the patient in a nursing home. One group member said, “The doctor told me, ‘You’re taking good care of him, he’ll live a long time,’ and I said, ‘Why is that a good thing?’ ”

 Los Angeles Times, February 2012: “Little-known brain disease rips apart lives of victim, loved ones” by Thomas Curwen

“The tragedy of FTD, according to Mario Mendez, the UCLA neurologist treating Stu, is its elusive diagnosis. The presence of the disease can be confirmed only through an autopsy, and Mendez reached his conclusion about Stu based on specific behaviors and brain scans.