EverydayArticle link

Free FTD Support Resources from the Association for Frontotemporal Degeneration (AFTD)

When frontotemporal dementia enters your life, you may feel lost and alone, but there is a national organization built just for families like yours. The Association for Frontotemporal Degeneration (AFTD) offers a wide range of free services, from a helpline staffed by trained social workers to support groups and even respite grants. You don't have to navigate this journey by yourself, and these resources are designed to meet you exactly where you are. Here are the concrete, free tools you can start using today.

Key points

  • The AFTD helpline (866-507-7222) is free, staffed by FTD-trained social workers, and is your best first step.
  • All AFTD support groups are free, and there are groups tailored for patients, PPA, male caregivers, and more.
  • Free educational materials include awareness cards, provider letters, and diagnostic checklists available at www.theaftd.org.
  • Respite grants are available to give caregivers a break; apply through the helpline or website.
  • The FTD Disorders Registry is a free way to learn about research opportunities.
  • You do not have to navigate FTD alone; these resources are designed specifically for you.

Why AFTD Exists and What It Offers for Free

FTD is less common and less understood than Alzheimer's disease, which can make it harder for families to find the information and support they need. The Association for Frontotemporal Degeneration (AFTD) was created specifically to fill that gap. Their mission is to improve the lives of people affected by FTD through education, support, and research. Crucially, nearly all of the services they provide to patients and families are free of charge. This includes their helpline, support groups, educational materials, and even certain grant programs. The organization also works to support clinicians, so if your healthcare provider needs to learn more about FTD, you can ask them to reach out to AFTD as well.

The Helpline: Your First and Most Powerful Free Resource

The AFTD helpline is staffed by trained social workers who specialize exclusively in FTD. They are there to answer any question you might have, whether it is about managing symptoms, finding a clinician, understanding research opportunities, or simply needing someone to listen. In a single year, the helpline received over 3,800 calls from people like you. You can reach them by phone at 866-507-7222 or by email at info@theftd.org. This is not a voicemail box; these are real people who understand FTD and can walk with you through the journey. They can also connect you to the other free resources described below.

Free Support Groups: Virtual and In-Person, Tailored to You

AFTD offers support groups that are both virtual and in-person across the United States, and all of them are free. These groups are not one-size-fits-all. There are groups specifically for people with primary progressive aphasia (PPA), groups for people who have been diagnosed with FTD themselves, and groups for male care partners. There are also groups for general FTD caregivers. The helpline can help you find the group that fits your specific situation. Meeting other families who are living with FTD can be profoundly validating and practical, as you share strategies and simply feel less alone.

Free Educational Resources and Awareness Tools

Beyond the helpline and support groups, AFTD provides a wealth of free educational materials on their website at www.theaftd.org. You will find awareness cards that can help you explain your loved one's condition to others, provider letters to give to clinicians, diagnostic checklists, and guides for navigating the disease. These tools are designed to help you advocate effectively and educate the people around you. The website also has information about the FTD Disorders Registry, a separate nonprofit co-founded by AFTD and the Bluefield Project to Cure FTD, which helps connect people to research opportunities.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Call the AFTD Helpline at 866-507-7222 to speak with a social worker who specializes only in FTD. Describe your relationship to the person diagnosed, your stage, and your biggest struggle; they will recommend specific resources.

  2. Ask the helpline to match you to an FTD-specific support group that fits your role (e.g., spouse, adult child, person with FTD) and format preference (virtual or in-person).

  3. Apply for an AFTD respite grant to cover a few hours of in-home care or adult day program. The helpline can walk you through the simple application; you do not need to be in financial crisis to qualify.

  4. Ask the helpline about the free FTD Disorders Registry, which can notify you about clinical trials and studies matching your loved one's diagnosis.

  5. If your healthcare provider lacks FTD knowledge, ask the helpline for free educational materials, including a provider letter template, to hand them so your loved one gets appropriate care.

What not to do

  • Don't wait until you are in crisis to call the helpline; they welcome early questions like 'What is FTD?' and calling sooner prevents overwhelm.

  • Don't join a general Alzheimer's support group for FTD-specific issues; the behavioral and language symptoms are very different, so ask AFTD for a tailored group.

  • Don't assume AFTD services are only for caregivers — people living with FTD can call the helpline and join groups designed just for them.

  • Don't try to educate your healthcare provider about FTD alone; AFTD has free clinician materials and provider letters you can hand them directly.

Practical tools

  • Helpline Call Script

    When you call 866-507-7222, say: 'Hi, my name is [your name]. I am caring for my [relationship] who has FTD. We are in the [stage]. I am struggling with [specific issue]. Can you help me find a support group and tell me about respite grants?' This helps the social worker assist you immediately.

  • AFTD Awareness Cards

    Small cards you can carry to briefly explain FTD when your loved one behaves unexpectedly (e.g., with a store clerk or police officer). The card says: 'My family member has frontotemporal dementia, which affects behavior and language. Thank you for your patience.' Download and print free from the AFTD website.

  • Provider Letter Template

    A free template on the AFTD website that explains FTD basics, symptoms, and management strategies. Print and hand it to any healthcare provider (PCP, neurologist, dentist) to help ensure appropriate care.

  • FTD Disorders Registry

    A free online registry co-managed by AFTD and the Bluefield Project. Sign up to be notified about research studies and clinical trials without obligation to participate. Find the link on the AFTD website.

  • Respite Grant Application Checklist

    Gather a brief description of your caregiving situation, the type of respite needed (e.g., in-home care, adult day center), and a cost estimate. The helpline will guide you through the easy application.

Discuss with your clinician

Ask your neurologist or primary care doctor if they are familiar with AFTD's free clinician education resources. You can share the provider letter from the website.

If you are considering genetic testing for FTD, discuss this with a genetic counselor. AFTD's helpline can help you find one, but the decision and interpretation of results should be done with a professional.

If you are applying for Social Security Disability, ask your doctor if they can support a 'compassionate allowance' application, which can fast-track approval for FTD. Discuss this with your clinician and the helpline can provide guidance.

Related guides

Sources