I think my loved one has FTD. What do I do?

Diagnostic visits can be challenging to confront for the person diagnosed and their care partner. But a comprehensive neurological evaluation is necessary to make an accurate diagnosis. There are not yet biomarkers for FTD, and there is no single test that can diagnose it with certainty in a living person. So doctors must make a determination based on the person’s history; the results of a variety of neurological, neuropsychological and imaging tests; and on changes in behavior, personality, language and/or movement. Write down and be prepared to describe in detail any changes you have noticed. Because FTD is still not a well-known condition and can be difficult to diagnose, advocacy will be important.

The medical specialist best able to evaluate cognitive and behavioral changes will be a neurologist, behavioral neurologist or neuropsychologist. If a local physician suspects FTD, you may wish to consult a university medical center or a memory and cognitive disorders clinic in your region that is equipped to provide the comprehensive evaluation needed. Visit our Diagnosing FTD page for more information on the types of testing done as part of a comprehensive evaluation.

My loved one has been newly diagnosed with FTD. I don’t know where to start.

FTD can be an overwhelming diagnosis to confront. The resources and information on AFTD’s website can help you learn about the disease and ways to maintain quality of life as you face a diagnosis. Our page for individuals and care partners facing a new diagnosis is the best place to start. It includes a link to our booklet, The Doctor Thinks it’s FTD. Now What? A Guide for Managing a New Diagnosis. Take your time reading the various sections, and don’t hesitate to contact our HelpLine ([email protected] or 866-507-7222) with follow-up questions.

How common is FTD?

The most reliable estimates suggest that between 50,000 and 60,000 people in the U.S. have FTD, based on a 2011 Journal of Molecular Neurology review by Dr. David Knopman and Dr. Rosebud Roberts. However, due to the difficulty in diagnosing FTD, as well as clinicians’ unfamiliarity with FTD relative to Alzheimer’s, experts in the field believe this figure may be an underestimate.

How do I find a support group for care partners of people with FTD?

Helping people affected by FTD to access the support they need is a core part of ATFD’s mission. FTD-specific support options are also a great way to continue to learn from  care partners who may be facing the same things you are. There is a growing network of in-person support groups for care partners around the country, as well as a variety of remote support resources (including phone- and internet-based groups). More information can be found on our page Support for Care Partners.

I have been diagnosed with FTD. How do I find peer support?

Finding others living with this diagnosis can be a lifeline.  A dedicated section on our website offers information and resources for individuals with FTD. AFTD runs two small support groups for persons diagnosed; these groups, led by AFTD staff, meet monthly via Zoom, an easy-to-navigate computer application that uses webcams. The focus is on shared experiences, strategies for keeping a positive outlook and adjusting to life with FTD. If you are interested in finding out more about the Zoom groups or other support options, contact our HelpLine ([email protected] or 866-507-7222).

What should I expect as the disease progresses?

FTD is not a single disease with an orderly sequence of stages; rather, it is an umbrella term for a range of disorders that affect the brain in diverse ways. In general, FTD initially affects one of three broad categories of functioning: executive ability and social behavior; language and communication; or muscle and body control. The initial presentation determines which of the FTD disorders a person is diagnosed with. As the disease progresses, difficulties in other categories of functioning may develop, but each person with FTD experiences these difficulties at a highly variable sequence and pace. (A saying common among people facing FTD is: “If you’ve seen one case of FTD… you’ve seen one case of FTD.”)

Regardless of the initial diagnosis, the differences between the disorders blur over time. When FTD reaches its final stages, all persons diagnosed will require total care.

Are there any approved treatments or medications for FTD?

Although research is active and ongoing, there are currently no approved therapeutic agents that can stop or slow the progression of FTD. However, there are pharmacologic, behavioral and even environmental interventions that can aid in symptom management. The page Treating FTD discusses medications used in treating FTD symptoms, and AFTD’s Partners in FTD Care newsletters describe how practical interventions can help manage certain challenging symptoms.

Is FTD hereditary?

For at least half of affected individuals, the answer to this question is no; in these cases,  FTD is considered sporadic, meaning the disease is not inherited and the risk of other family members developing FTD is no more or less than anyone else in the general population. The genetics of FTD is complicated, and a subject of ongoing research. Approximately 40% of affected individuals with FTD do have a family history that includes at least one other relative diagnosed with a known neurodegenerative disease. A subset of these cases has been determined to be hereditary based on mutations known to cause FTD. In these cases, first-degree relatives of a person diagnosed have a 50% chance of developing the disease.  For more information and resources on the genetics of FTD, please visit the genetics page of our website.

Does traumatic brain injury cause FTD?

Researchers are actively looking into the possible relationship between traumatic brain injury (TBI) and neurodegenerative disorders. Studies have shown that repeated concussions can lead to a progressive brain disorder known as chronic traumatic encephalopathy (CTE). People with CTE can behave aggressively and impulsively, similar to those diagnosed with FTD disorders, particularly behavioral variant FTD. Both CTE and FTD ultimately progress to dementia, and the protein tau accumulates in unusual levels in the brains of people with both conditions (as well as in Alzheimer’s disease).

However, there are important clinical and pathological differences between CTE and FTD, and most people who develop FTD have no history of TBI. More research is needed before we can determine if  brain injuries may be a risk factor for FTD.

Could FTD be caused by toxins or environmental factors?

Currently, we know very little about the risk factors that contribute to the development of FTD disorders. This includes the effect – if any – of environmental factors such as diet, stress, smoking, alcohol and drug use, or exposure to chemicals and toxins. FTD is sporadic in the majority of affected people, meaning they lack a relevant genetic mutation or even a family history of the disorder. (Visit the Genetics of FTD for more information) For these individuals, FTD may be caused by an interaction between genetic and environmental risk factors. Although each factor by itself may have only a very small effect on the risk of developing FTD, the presence of multiple risk factors may have a cumulative impact. More research is needed to better understand the role of environmental factors in the FTD disease process.

Does AFTD provide educational resources for professionals?

AFTD works every day to promote and provide education for healthcare professionals. Our ongoing education initiative Partners in FTD Care promotes best practices and helps providers to understand how FTD differs from Alzheimer’s disease and what effect that has on care, by looking at specific cases of FTD. The AFTD Educational Webinar Series is another useful and free resource. Healthcare professionals can contact our HelpLine ([email protected] or 866-507-7222) with specific questions about FTD, and to learn more about educational resources.

Does AFTD offer financial support for persons diagnosed and care partners?

Yes. AFTD offers three different grants through our Comstock Grant program. A  Respite Grant provides monetary support to help full-time, unpaid care partners arrange short-term respite. Travel Grants are available to help people with FTD, care partners or family members arrange travel to/from the annual AFTD Education Conference or other FTD-focused events. And Quality of Life grants help people diagnosed with an FTD disorder access goods, services or supports to maximize quality of life.  For more details, including how to apply, please visit the Comstock Grants page of our website.

I am interested in donating a family member’s brain for research. Who can help, and where do I start?

Brain donation gives families the opportunity to obtain a confirmed diagnosis and contribute to FTD and neurodegenerative disease research. For those enrolled in clinical research through an FTD research center, donations are often made in conjunction with the study.

Families not enrolled in clinical research, however, may have difficulty pursuing the necessary information about brain donation until late in the disease stage. Two nonprofit organizations can help families with the process: The Brain Donor Project, affiliated with the NeuroBioBank, and the Brain Support Network. These organizations help families complete the necessary paperwork and arrange logistics, but families may have to cover some or all of the financial costs associated with brain donation.

It is important to enroll your loved one in a brain donation program as early as possible to complete the necessary paperwork. Enrollment must be completed while the person diagnosed is still living, and donations to a brain bank must be completed within 24 hours after death. Note that, although brain donation provides families with a written report and diagnosis, the report does not include genetic information unless specifically requested.

Visit our page on Brain Donation for a detailed overview.