Newly Diagnosed
You are not alone.
AFTD is committed to providing the information, guidance, and connection you need to navigate this diagnosis. Each year, researchers make strides toward understanding FTD and developing effective treatments. Support networks and available resources continue to expand. AFTD is here to support you as you begin to find your footing and discover the resources and growing community that are available to help you.
AFTD provides resources to help you understand FTD and ways to stay active, engaged, and become informed about services, supports, and some emerging treatments that can maximize quality of life. Sign up for our mailing list for the most current information.
AFTD's "Newly Diagnosed Guide" was created to help outline the steps in order to adjust to the changes ahead.
AFTD is pleased to also share our Newly Diagnosed Checklist in Dutch, French, Italian, and Polish. These translated documents have been made possible with the generous support of AviadoBio.
Overview of FTD
FTD represents a group of brain disorders caused by degeneration or shrinking of the frontal and/or temporal lobes of the brain. It is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration, frontotemporal neurocognitive disorder or Pick’s disease.
To learn more details about FTD, please visit the Disease Overview page of our website.
Sharing the Diagnosis
While an FTD diagnosis provides clarity, it does not ensure that others will accept and understand that FTD is the true cause of behavioral changes and other symptoms.
Everyone will bring their own history with the person diagnosed and will have their own unique reaction. Understanding an FTD diagnosis takes time, and while some relationships may be tested, others will be strengthened.
Deciding when and how to share the diagnosis is a personal choice: Those who choose to tell others what they are facing may feel empowered and find themselves better able to gain support, but family situations and support systems vary tremendously. The lack of insight that often accompanies FTD may be a hurdle; the person may not recognize their symptoms or want to acknowledge having FTD at all.
Consider first reaching out to family, friends, and others in your network who you trust will be willing to learn about the diagnosis and provide help throughout the FTD journey. Start by offering information and giving a basic outline of what you know, acknowledging that you may still have your own questions about the diagnosis. Use information and resources from AFTD and refer others to AFTD’s website and HelpLine if they have additional questions. Share that AFTD’s network of support is available to everyone impacted.
Before FTD is correctly diagnosed, unexplained behavioral or personality changes may create confusion, anger, and frustration among family and friends. Professional colleagues may disengage, familial relationships may become strained, and marriages may even end. Each person’s experience with FTD is unique, and relationships can be affected in different ways:
Person with FTD diagnosis
- While some may not be aware or recognize all of the changes FTD brings, many will experience feelings of grief and loss, including changes in employment and independence, and benefit from support options.
- Peer support can help connect with others who understand. Finding ways to make meaningful contributions to family and community can ward off the isolation that diagnosed persons often feel.
Spouses or partners of persons with FTD
- Often the main care partner.
- Symptoms can lead to changes in companionship and intimacy. Many changes may be difficult or embarrassing to talk about with family and friends, leading to increased feelings of isolation.
- Spouses often experience role changes, including management of household tasks, decision making, and care management, that were previously shared. Some may have to consider changes in their own employment due to caregiving responsibilities.
- May experience difficult emotions including guilt, anger, loneliness, disappointment, and grief. Connect with other care partners for support and remain connected with your own health care team for your self-care and health needs. Individual counseling can help support emotional care and coping skills.
- Often navigating varying family dynamics, including in situations of second marriages where step-children may be involved as primary care partners as well.
Young adult or adult child of person with FTD
- A person’s response to the diagnosis and changes is often shaped by the frequency of contact, amount of direct care, and their personal, work, or family situations.
- Siblings in a family may respond differently to the diagnosis and parents’ needs. Each has a different relationship with their parents.
- Faces many difficult emotions including guilt or anger, concern, disappointment, and grief. Connect with support options specifically for young adults or adult children with a parent with FTD.
- May face difficult choices about postponing future goals or life changes to care for parent.
Parents caring for an adult child with FTD
- Parents managing care face unique emotional and practical issues.
- Even if they are retired, coping with the logistics, physical demands, and financial costs of caregiving is stressful.
- Personal medical and emotional health are important to maintain.
Families with children in the home
- Having young children or teens in the home adds many emotional, practical, and financial considerations.
- Take steps to communicate what is happening with children honestly at an age-appropriate level, and support their growth and development.
- Enlist the help of family, friends, and trusted adults to maintain balance in the family and attend to each person’s well-being.
Long-distance or secondary care partners: Siblings, extended family and friends, coworkers, colleagues
- Limited in-person contact makes it difficult to appreciate and understand the impact of FTD on the person and primary care partners.
- May have many unanswered questions if limited information is provided.
- Learn as much as possible about FTD from reputable sources and trust the main care partner’s perspective. Many symptoms can be difficult to talk about and the primary care partner may be navigating more than you realize.
- May feel unsettled and not know what to do with the changing relationship. Identify a specific, practical way you can help, such as providing meals, helping with household tasks, researching resources and information, or making phone calls.
- Often difficult for the main care partner to initiate or maintain contact; a call, text, or card to say you are thinking of them is helpful.
Ex-spouses or ex-partners
- There are some couples who may have separated or divorced, sometimes before a diagnosis has been made. This can be related to FTD’s impact on personality and behavior and the often long journey to diagnosis, or may have been related to an issue separate from the changes FTD caused.
- Ex-spouses often face unique emotions and questions. They must often consider if and how they may be involved in supporting the person with FTD over time.
- Ex-spouses may be supporting adult children who are primary care partners.
Adjusting to Life with FTD
Every person, family, and care partner has unique strengths and can make meaningful choices to guide the path forward on the FTD journey. While there may be moments when it all feels overwhelming, there will also be opportunities to find new meaning and shared joy. Reflect on your core values, goals, and cherished relationships—and consider ways to keep them at the center of your life.
Health and Wellness
As public awareness grows and diagnostic tools improve, more individuals are being diagnosed with an FTD disorder earlier, when symptoms are still mild. While lifestyle changes cannot stop, slow, or reverse the progression of FTD, staying as healthy and active as possible can support overall physical health as well as mental and emotional well-being.
Although there is limited research on the specific benefits of healthy habits in FTD, studies in other types of dementia suggest that good nutrition and lifestyle choices may reduce the risk of heart disease and help support brain health. A “heart healthy” or “brain healthy” diet—low in saturated fats and cholesterol and rich in fruits and vegetables—can contribute to overall well-being.
Incorporating proper nutrition, regular physical activity, and stress management may help maintain a healthy weight, support healthier sleep patterns, and lower the risk of diabetes and cardiovascular issues, both of which can impact brain function. These habits may also help the unaffected areas of the brain function as effectively as possible.
Staying Engaged with Daily Routine
Staying engaged in enjoyable, meaningful, and mentally stimulating activities is important for persons living with FTD and their care partners to promote quality of life. Engagement for the person with FTD should reflect their personal interests and may need to evolve over time as abilities and needs change. Anticipate and plan for transitioning out of work—this can bring a sense of loss and disrupt daily routines and social engagement.
Finding ways to maintain social connections and adapt former interests into new, accessible activities can help preserve a sense of identity, engagement, and purpose. Volunteer activities can also provide opportunities for meaningful contribution and connection with others.
Creating predictable daily routines provides stability and comfort for both the person with FTD and their care partner. Try to maintain consistency in everyday activities like meals, household tasks, exercise, hobbies, social time, and spiritual practices.
Adapting to Changing Needs
People living with FTD often have trouble with planning, organizing, and completing tasks, so family members and friends may need to take the lead in initiating and guiding activities—while remaining flexible along the way. Because FTD can progress in unpredictable ways, being open to trying new strategies or adjusting approaches is essential.
To ensure activities remain appropriate and engaging, observe any changes in the person’s abilities and increase support or supervision as needed. Adjusting your expectations—and helping others do the same—can ease frustration and promote more positive interactions. For those who don’t see the person regularly, cognitive and communication challenges may not be obvious at first. The care partner’s approach and attitude can help guide others in how to respond with understanding and respect.
As symptoms advance, remember that meaningful engagement doesn’t have to be complex. Simply listening to music, watching birds, or spending time outdoors can provide comfort and enjoyment.
Address Safety Issues
FTD symptoms can affect a person’s safety both at home and in the community. These changes may involve behavior, communication, or physical care needs, and the needs may shift over time as different abilities are impacted. Not everyone diagnosed will engage in high-risk behaviors, but staying aware of potential safety concerns—as well as the signs and symptoms—can help inform safety planning and ensuring appropriate support.
Often, people with FTD can function well in some areas while experiencing significant challenges in others, which can make it harder to determine when additional help is needed. The person with FTD may not recognize their own declining abilities or changes in judgment and might perceive safety measures as threats to their independence, leading to frustration and resistance. For this reason, care partners can benefit greatly from the guidance and encouragement of healthcare teams, support groups, friends, and family.
Behavior and Personality Considerations
Changes in personality, behavior, and judgment are common features of FTD. These changes can be distressing, unpredictable, and often starkly different from a person’s past behavior. Symptoms such as impaired self-awareness, impulse control, decision making, and loss of empathy can create safety, social, legal, and financial risks for the person and their family.
Common behavioral changes include:
- Apathy without sadness – A loss of interest or motivation without feeling sad, often mistaken for depression.
- Loss of empathy – Seeming indifferent or emotionally detached, which may upset or confuse others.
- Behavioral disinhibition – Inappropriate comments or actions, such as touching strangers, shoplifting, impulsive spending, inappropriate sexual behavior or in some cases, concerns related to self-harm.
- Mood instability – Sudden irritability, anger, or aggressive outbursts.
- Poor judgment and executive dysfunction – Risky decisions at work or home, susceptibility to scams, questionable financial choices.
- Compulsive or ritualistic behavior – Repeating words or actions, hoarding, roaming, pacing, or obsessive routines.
- Hyperorality – Changes in oral behavior or eating habits, including compulsive eating or drinking, especially sweets or alcohol.
- Disorientation and confusion – Wandering, getting lost, or appearing disoriented.
- Lack of insight – Difficulty recognizing or accepting their own changes, leading to resistance or blaming others. These behaviors can pose significant challenges for care partners.
As symptoms progress, increasing levels of supervision and structured support may be needed. While managing behavioral symptoms can be overwhelming, proactive planning and a strong care network can significantly reduce risk and help maintain quality of life for everyone involved.
For more information, watch the AFTD Educational Webinar “Person-Centered Care for Behavioral Variant FTD,” available on AFTD’s YouTube channel.
Communication Considerations
Communication challenges are common across all forms of FTD, but they are especially pronounced in individuals diagnosed with a variant of primary progressive aphasia (PPA). These conditions impact a person’s ability to produce and understand language, with symptoms generally falling into two categories: apraxia (difficulty producing speech) and aphasia (difficulty with word recall or grammar). Many people experience a mix of both.
- Common changes may include:
- Slow, labored speech
- Pauses and hesitation while speaking
- Omitting or mixing up words in a sentence
- Speaking in shorter, simpler sentences
- Difficulty naming objects or people, or relying on lengthy descriptions to replace missing words
- Trouble understanding complex sentences
- Gradual decline in speaking and comprehension, which may eventually lead to complete loss of speech
Although individuals may function independently in the early stages, growing difficulty with asking for directions, responding to emergencies, or expressing needs can present safety concerns. It’s recommended that the person wear a medical ID or alert bracelet and carry a communication card—such as AFTD’s PPA awareness cards—that includes their name, address, diagnosis, and emergency contact information.
Communication changes can lead to frustration, anxiety, depression, or social withdrawal. Supporting emotional well-being and maintaining social connections is vital. A speech-language pathologist can provide valuable support, assessing communication needs and offering strategies such as using writing pads, picture books, alternative augmentative communication (AAC) devices, voice banking, and other assistive technologies to help extend and support verbal abilities.
For more information, watch the AFTD Educational Webinar “Maximizing Communication, Maintaining Connection,” available on AFTD’s YouTube channel.
Movement and Mobility Considerations
Progressive changes in movement are common in several forms of FTD, particularly in conditions like corticobasal syndrome (CBS), progressive supranuclear palsy (PSP), and FTD with motor neuron disease (FTD-ALS). Individuals may develop stiffness, slowness of movement, shuffling gait, tremors, balance problems, and increased risk of falls.
Symptoms may include:
- Parkinsonism-related features
- Difficulty with balance or walking; rigidity and tremors
- Slowness or stiffness in movement
- Impaired eye movements, especially vertical (downward) or horizontal gaze, particularly in PSP
- Difficulty initiating or coordinating limb movement (limb apraxia), particularly in CBS
- Motor neuron (ALS-like) symptoms
- Muscle weakness, twitching, or visible muscle wasting
- Trouble lifting arms, using hands, or performing fine motor tasks (e.g., buttoning, writing)
- Changes in walking stride or speed
- Drooling, difficulty swallowing (dysphagia), and slurred or slowed speech
These mobility and motor control issues can significantly affect safety and independence, increasing the risk of falls, injury, and complications like aspiration pneumonia due to swallowing difficulties. As the condition progresses, physical and occupational therapy can help people stay active and safe for as long as possible. Therapists can recommend adaptive strategies, mobility aids, and home modifications tailored to individual needs.
Additionally, movement disorder specialists can support the management of motor symptoms, while speech-language pathologists (SLPs) can offer personalized approaches to address speech and swallowing difficulties, helping to reduce choking risk and maintain proper nutrition.
For more information, watch the AFTD Educational Webinar “Person-Centered Care for Corticobasal Syndrome and Progressive Supranuclear Palsy,” available
on AFTD’s YouTube channel.
Driving Considerations
Persons with FTD will eventually need to stop driving, but determining the right time can be challenging. Driving laws and reporting requirements vary by state, so it’s important to contact your local Department of Motor Vehicles (DMV) or equivalent agency for specific guidance.
Additional points to consider:
- In many states, any individual—not just healthcare providers—can report concerns about someone’s driving ability.
- Some states offer specialized programs, often through the state office on aging, that provide resources and guidance on driving safety.
- In some areas, there are driver evaluation programs offered by occupational therapists to assess a person’s ability to drive.
- A dementia diagnosis may affect auto insurance, including potential increases in premiums or cancellation of coverage.
- Because of impaired judgment and insight, some individuals with FTD may continue to drive—or attempt to—even after their license has been revoked. In such cases, families need to take steps to limit access to vehicles to ensure safety.
Lessons Learned
Below are links to lessons learned from persons diagnosed and experienced caregivers.
Planning for Legal, Financial, and Health Insurance Issues
It is important to address legal, financial, and insurance considerations as quickly as possible so that the person diagnosed can make their wishes known and participate in planning.
To learn more, please visit the Planning for Legal, Financial, and Health Insurance Issues page of our website.
Research: How You Can Help
Research is a wellspring of hope for people impacted by FTD. Over the last several years, there has been significant progress in FTD research, including advances in diagnostic evaluation, understanding of the pathology and genetics of FTD, and evaluation of potential treatments. Research participants play a vital role in that work.
People help for a variety of reasons. Contributing to research may:
- Provide you access to interventions (such as drugs, treatments, medical devices, etc.) or FTD specialists and assessments that might not otherwise be available.
- Further our understanding of how to diagnose, prevent, treat, or cure FTD in yourself and others, including future generations.
- Give you a deeper understanding of your own FTD.
There’s no shortage of opportunities to participate, ranging from completing surveys from home, to undergoing regular testing to see how FTD changes over time. You and your family might take part in studies of behavioral interventions and the best ways to provide education and support to caregivers. One of the most important types of research is clinical trials.
Clinical Trials
Clinical trials are a type of research conducted to determine the safety and effectiveness of new medical interventions. The last few years have seen enormous growth in clinical trial opportunities for FTD, including studies testing medications that have the potential to stop or slow its progression. Every clinical trial is different in what it asks of participants and in its potential benefits and risks.
Many current FTD clinical trials are testing interventions for genetic causes of FTD (e.g., FTD-GRN) or specific types of FTD (e.g., PSP) for which scientists have a better understanding of the cause. Learnings from these clinical trials can lead to interventions for all causes of FTD, both genetic and sporadic. To get information about which FTD clinical trials need participants, join the FTD Disorders Registry, or check out Clinicaltrials.gov, a public database of funded studies on a wide range of diseases and conditions maintained by the U.S. National Institutes of Health.
The best time to think about enrolling in FTD research studies is early in the disease course, when travel, tolerance for assessment, and follow-up are more feasible. You might also consider brain donation; brain tissue can help scientists develop treatments and diagnostic tools targeting the microscopic pathology that causes FTD.
Let your clinical team know if you and your family are interested in any of these research opportunities.
Genetic FTD Testing
Many studies focus on genetic causes of FTD, despite research showing that about 60% of people diagnosed have no genetic cause. There are several reasons genetic research is so important. When a genetic cause is identified, scientists can be certain the diagnosis is correct. Additionally, when scientists understand the function of the gene that causes FTD, they can target the specific effects of the gene.
Genetic testing has broad research applications but can have highly personal implications. For example, results for one family member may reveal information about another relative. Nevertheless, knowing that genetic FTD is part of your family’s DNA can inform many important life decisions, including career, family planning, and financial decisions.
For these and other reasons, carefully weigh the decision to test. AFTD strongly encourages consultation with a licensed genetic counselor—a medical professional who can help you think through the pros and cons as well as different avenues for obtaining genetic testing.
Join the FTD Disorders Registry
Joining the FTD Disorders Registry, co-managed by AFTD and the Bluefield Project to Cure FTD, is the best way to learn more and stay informed about FTD research opportunities. Registry members have access to a personalized dashboard providing updates on new clinical trials and educational resources tailored to your interests. Eligible participants may also join the Registry Research Study to share their lived experience through brief surveys to further advance the science of FTD disorders.
Just signing up with the Registry is itself a powerful way to advance FTD science. Disease research is a “numbers game,” with funding and scientists gravitating to studies with the broadest potential impact and largest pool of potential research participants. By joining the Registry, you’re standing up and being counted. Visit FTDregistry.org to sign up!
Create Your Care Team
Quality FTD care involves a range of healthcare providers, but assembling a care team that works collaboratively can be challenging. Primary care partners and persons with FTD often need to coordinate multiple providers and appointments, educate others about FTD, and be strong advocates for themselves.
Care teams may include a range of specialists including a neurologist (behavioral and/or movement specialist), psychiatrist, geriatrician, and primary care provider. At times, keeping follow-up appointments might seem cumbersome, especially if they require traveling to a specialized center. However, maintaining regular appointments with a provider can ensure that you are an established patient and that your records are up to date if any changes occur. In many areas, telehealth options may be available.
It can be difficult to find health care providers with specific experience in FTD. When working with providers who do not know about FTD, share AFTD health professional resources. Find health care providers with whom you feel comfortable communicating and who listen carefully to your concerns.
Additional health care specialists can also be valuable additions to your team, including a speech-language pathologist (SLP), physical therapist (PT), occupational therapist (OT), psychologist, counselor or psychotherapist, genetic counselor, and a social worker or case manager. A social worker, case manager, or care navigator can often provide support in coordinating providers, appointments, and resources.
Tips for Managing Medical Appointments
- Between appointments, document any changes you observe and any concerns you may have. This will help you more effectively communicate them to your providers as they arise. Use the AFTD Behavior Tracker as a guide.
- Keep a running list of questions you want to ask at your next medical appointment. Consider bringing a trusted friend or family member to act as a second set of ears when you meet with a healthcare provider or to take notes at the appointment. If you have questions that you don’t want your loved one to hear, find a way to ask them privately through a follow-up phone call or through the electronic health portal.
- There are no medications that treat FTD directly, but you may be offered one or more prescriptions to manage symptoms. Make sure to ask your prescriber about the risks and benefits and what to expect with each potential medication.
- Create a permanent and accessible healthcare file. There are apps available to help you create a personal health record of appointments, testing, and medications. Your records should include contact information for current and past healthcare providers, a history of medications used (including dosages), copies of test results, medical records, relevant legal documents, and insurance information and receipts.
Community Resources and Services
You may not currently need support services, but finding community resources now can make things much easier down the road. Ask your personal network—friends, neighbors, local community groups, or faith-based organizations—if they have experience with support services in your area. Social workers, case managers, and local FTD/dementia groups can also help you find services. This can be an opportunity to enlist others in your network to help with researching what is available.
Many programs will not be familiar with FTD. AFTD resources can help them learn more about your specific needs. The AFTD HelpLine is also a resource for you in navigating options and for others who want to learn more about FTD.
Here are some sources of support during the FTD journey:
- Care Coordinators. Social workers, care managers, nurses, and other professionals can advocate for you, navigate care options, and coordinate providers on a consultation or ongoing basis. Some healthcare providers or medical centers have social workers or care navigators on staff to support patients and their families. These professionals can also be found through local agencies or paid for privately.
- GUIDE program. The Guiding an Improved Dementia Experience (GUIDE) model aims to support people with dementia and their unpaid caregivers. This is a pilot program offered for those with Medicare.
- Area Agency on Aging (AAA) or Aging and Disability Resource Center (ADRC). These local government offices can serve as an access point for a variety of long-term services, support and financial resources for older adults, persons with disabilities, and their care partners.
- Home care services. Home health aides assist with personal care and supervision and are paid on an hourly basis.
Skilled home care. This may include a visiting nurse as well as physical, occupational, or speech therapy. These services require a prescription and may be covered by insurance.
- Physical therapy (PT), occupational therapy (OT), and speech-language pathology (SLP). These three disciplines offer a range of skilled support. They can provide personalized recommendations regarding exercises, assistive medical equipment, home adaptations, and communication strategies, tools, and devices.
- Respite care. This is a short-term care option, either at home or in a facility, that provides relief for a family care partner. AFTD’s Comstock Grants help family care partners pay for respite care.
- Adult day services/programs. These offer structure, activities, and supervision for those with dementia and other care needs. They can be used occasionally—when the main caregiver is working, for example, or to provide respite from round-the-clock care.
- Facility or residential care. Considering residential care can be an emotional decision, but it may ultimately reduce stress and provide greater support for both the person living with FTD and their caregiver. Facilities offer different levels of care—assisted living, memory care, and skilled nursing—but many are geared toward people over age 65. Since facilities that specialize in dementia are more familiar with Alzheimer’s disease than FTD, it is crucial to develop a relationship with staff to help them understand the specific needs and challenges of FTD.
- In-patient psychiatric or behavioral health units. At times, highly structured care is needed for safety, and to evaluate or adjust medication for someone who is at risk of harming themselves or others. Successful in-patient stays require close coordination between care partners, the person’s medical team, and hospital staff.
- Palliative care. This is designed to relieve the pain, symptoms, and stress of serious illness and to improve the quality of life for the person diagnosed. It can also help with managing complex care needs. Neuropalliative care specialists are available in some areas.
- Hospice care. This provides coordinated, compassionate end-of-life support focused on comfort and quality of life. Many families find valuable support from hospice when their loved one becomes eligible for it.
- Genetic counseling. Genetic counselors provide essential support for those considering family risk and genetic testing. You can meet with a genetic counselor individually or with a family member or friend to review your family history, address concerns, choose the most appropriate testing strategy, and help you consider how the results could impact you and your family.
- Counselor or therapist. Consider individual, couples, or family therapy to help you cope with the feelings and changing relationships that come with FTD.
Finding a Support Group
Finding your community can make all the difference for you and your loved ones. AFTD-affiliated support groups offer a safe, moderated space where you can find resources and connect with others who truly understand your experience.
Going to your first group meeting can be intimidating. Keep in mind:
- You can meet the support group facilitator before your first meeting. AFTD-trained facilitators are warm and welcoming, and can answer many of your questions, including what to expect during a typical meeting.
- No one is required to share or respond to others who are sharing.
- The first few meetings can feel overwhelming. Group members and facilitators have been in your shoes and will help orient you.
- It’s OK if you skip a meeting, or show up to one late. FTD support group members are compassionate people and they understand your time pressures.
- Not every group is a good fit for everyone. Feel free to try multiple options until you find the group that works for you.
FTD Support Group and Diagnostic Center Locator
AFTD’s website features an interactive U.S. map to help you find support group that best meets your needs. To register for a national group, contact AFTD’s HelpLine at 866-507-7222 or info@theaftd.org.
There are local, regional, and national support groups, with some that meet in person and many that meet virtually. There are also support groups for persons with specific caregiving needs or interests and for people diagnosed with FTD.
AFTD trains and provides resources to support group facilitators who are experienced in group dynamics. Many facilitators are, or have been, care partners of a loved one with FTD and can share local resources and support options.
AFTD Resources
You don’t have to face the FTD journey without help. AFTD has created and compiled resources that you can use for support, as well as to educate yourself and others about this disease.
Click here to view AFTD's resources.
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