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 no biomarkers yet for FTD, and there is no single test that can diagnose it with certainty in a living person. 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 via email at [email protected] or by phone at 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.
Could I be at risk of inheriting FTD? Could I pass it on to my children?
When assessing the possibility that FTD could be inherited in your family, it’s important to first keep in mind that at least half of FTD cases are sporadic. These sporadic cases of FTD occur in people without a known family history of dementia or neurodegenerative illness.
Multiple studies since 2009 have identified that 40 percent or more of FTD are known as familial. These cases can reflect a family history of dementia, a major psychiatric condition, or progressive challenges in movement.
A subset of familial FTD cases are genetic, or hereditary, in nature. They occur when a parent passes a genetic variant associated with FTD to their child. All known genetic forms of FTD are autosomal dominant, meaning that if one parent has an FTD-associated variant, the child has a 50% chance of inheriting it. While more than a dozen genetic variants are known to cause FTD, the most common are C9orf72, GRN, and MAPT.
Family history doesn’t always tell the whole story. FTD can present with a wide variety of symptoms, and it remains frequently misdiagnosed even today. These factors can make it difficult to have a complete understanding of prior family history of the disease. In fact, researchers have found a small but significant percentage of genetic variants associated with FTD in people without a family history.
Genetic testing is the only way to know whether there is a genetic variant linked to FTD in your family. Prior to genetic testing, AFTD strongly recommends meeting with a genetic counselor to understand the genetics of FTD and advise you on your particular situation and potential risk.
AFTD now provides a full resource on the causes and genetics of FTD on our website.
Why doesn’t my loved one acknowledge their FTD, or its impact on our family?
A lack of insight into one’s condition is known formally as “anosognosia,” and is a common, albeit not universal, symptom of FTD, particularly its behavioral variant. People with anosognosia are unaware of their disease and cannot understand its impact on others. It differs from denial, which is a coping mechanism employed to confront an unpleasant or painful situation. Rather, anosognosia results from physical changes to the brain, and tends to worsen as the disease progresses. People with anosognosia may function normally in some areas of their lives, yet engage in risky and seemingly callous behaviors because they do not recognize their actions as problematic.
Having a loved one refuse to acknowledge their condition can be incredibly frustrating. Caregivers and care partners should try their best to remember that their loved one is not being manipulative or deceitful; this lack of awareness of their changing behavior is a symptom of the disease. Caregivers can take steps such as:
- Disabling the internet to prevent financial losses
- Removing weapons
- Hiding food and/or car keys
- Opening new limited-access bank accounts, etc. to preclude risky behaviors or at least minimize the harm.
Avoid trying to convince the person with FTD that they have a disease. Anosognosia cannot be treated by argument or persuasion; this usually just leads to frustration, agitation and aggression.
Additionally, anosognosia is one of the main reasons people with FTD refuse medical care, which can be particularly problematic prior to a diagnosis. Consider creative, indirect ways to have the patient seen by a healthcare provider if they resist. For example, some persons with FTD will agree to see a provider if you tell them that it is necessary to keep their insurance benefits, or to refill medications they take for a different condition. Keep the explanation as simple as possible.
The Winter 2019 issue of AFTD’s Partners in FTD Care takes a comprehensive look at anosognosia and offers strategies for providing care for someone who exhibits it.
Should my loved one with FTD stop driving?
Driving is a complex skill requiring higher cognitive functioning; unimpaired vision, motor control, and coordination; and an ability to maintain attention. FTD can degrade each of those systems. Additionally, symptoms of FTD that may be less immediately apparent, such as impaired judgment and disinhibition, correlate with poorer driving ability. Families may struggle with the idea that their loved ones with FTD appear to retain the physical ability to drive, yet still encounter difficult situations on the road. Often, this is due to those less apparent symptoms.
Because persons with FTD may insist that they are still able to drive – indeed, they may not even be aware that they have FTD – care partners often face the difficult decision of when and how to take away their keys. Convincing them to voluntarily stop driving will likely not work. Many families find it helpful to turn to their loved one’s physician for their recommendation. Taking an independent driving evaluation, whether through a DMV or driver-rehabilitation program, can demonstrate that driving with FTD has become too challenging. Make sure that the evaluator is aware that they will be driving with someone who has FTD beforehand.
Consult AFTD’s Driving and FTD page for more information.
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). In response to the COVID-19 pandemic, most support groups are now available to meet via AFTD’s dedicated and secure Zoom account. 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.
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.