Find Support Near You…

FTD is a complex disease. Upon a loved one’s diagnosis, care partners face emotional and practical challenges that can be overwhelming and isolating. Support groups provide a resource, an outlet, and a place to collect and share your thoughts with others who understand.

“I went to the FTD support group for the first time last night and came back feeling so much better…with so many answered questions. I now feel like I’m not alone.” Sandy, TX

What happens at an FTD support group?

In your journey as an FTD care partner, you will face difficult and uncomfortable scenarios, take on new roles in your relationship, and be forced to adjust to a life forever altered by this disease. Support groups can help you navigate through the many facets of caring for someone with FTD.

Groups typically meet once a month. When a support group is led by an AFTD trained volunteer (identified by red pins in the map below), the volunteer has been trained and empowered by AFTD to foster practical, supportive group discussions, around topics such as

Safety
Symptom management
Adapting to changes and changing relationships
Local resources
Activities for the person living with FTD
Your own self-care
Navigating grief that can arise throughout this journey.
Topics presented by guest speakers at the request of the group (for example: an Elder Law Attorney).

PLEASE NOTE: In response to the COVID-19 pandemic, most support groups are now available to meet via AFTD’s dedicated and secure Zoom account. Learn more about how your local group is meeting by contacting your local support group volunteer, or by reaching AFTD’s HelpLine at 1-877-913-3457, [email protected]).

Select your state below for more details about support groups and resources near you:

Have Questions?

We include commonly asked questions about support groups below. Support group volunteers can also be excellent guides to the value their groups provide.

I can’t find a group that’s accessible in my area. Are there national groups that I can connect with virtually?

AFTD sponsors national support groups for people who are not able to access a group in their area. These groups meet either by phone or through Zoom, and blend emotional support with education on FTD and caregiving. We limit the number of active participants to 10-12 maximum, so it may take some time before space in a group is available. Due to the COVID-19 pandemic, many local support groups are now meeting via Zoom, so this may offer you another accessible option at this time.

Are there other options for support?

AFTD’s main Facebook page keeps followers up to date on events, research, and the latest news. AFTD also has a private or “closed” Facebook group where members are invited to post their experiences and respond to discussion items on the page. Finally, AFTD offers a young adult Facebook group for people in their 20s and 30s who have a loved one with FTD; to join, email [email protected] and include the email address you used to open your Facebook account.

AFTD can also sometimes match FTD care partners in a particular city or region through information they share when they register with us. When there are no in-person support groups close by, these informal connections can be extremely helpful. If both parties agree to meet, AFTD shares a name and a contact number or email, but no other personal information. You take it from there. To request an informal connection, contact AFTD’s HelpLine at 866-507-7222 or [email protected].

These resources may also be of interest:

The FTD Support Forum: An online forum open to caregivers and persons diagnosed with FTD or a related disorder.
FTD Spouse Caregiver Support Facebook Group: An independent peer support group for spouses of people with FTD.
The Well Spouse Association: A volunteer-based nonprofit organization that provides peer emotional support and information to the husbands, wives, and partners of people with chronic illnesses and/or disabilities.
Caregiving.com: An online community of supportive individuals who provide care for a family member or friend.
Publications on FTD produced by AFTD or with AFTD input.

Want to learn more about how to become a support group volunteer? Please visit our Take Action and Volunteer page for more information.

I am living with an FTD diagnosis — are there groups tailored to support persons with FTD?

Finding mutual support from others diagnosed with FTD can be valuable but there are still far too few options. AFTD runs two support groups for persons diagnosed with FTD. The groups meet for an hour once per month via Zoom. It is a small group led by AFTD staff. The focus is on shared experiences, strategies for keeping a positive outlook, and adjusting to life with FTD. Please see our Support for People with FTD page for more information.

Can I start my own support group?

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