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).

The map below shows support groups in your area: Click on the icons to learn more about each group.

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 (1-866-507-7222, [email protected]).

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

Select a State to Begin

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.

Phone Support: ALS with FTD	Miki Paul 866-507-7222 [email protected]
Phone Support: Behavior Group 1	Mary McLeod 866-507-7222 [email protected]
Phone Support: Behavior Group 2	Carol Lovett 866-507-7222 [email protected]
Phone Support: Language Group	Bridget Moran-McCabe 866-507-7222 [email protected]
Phone Support: Men’s Caregiver Group	Matt Dineen (866) 507-7222 [email protected]
Phone Support: Parent Group	Alyssa Radcliff (866) 507-7222 [email protected]
UCSF Phone Support: Adult Children Affected by FTD	Jamie Fong 415-570-2442 [email protected]

Note: there are also groups for people diagnosed with FTD that meet by video conference — please see our Support for People with FTD page for more information.

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. Caregiving.com hosts an informal weekly chat for FTD caregivers and a monthly podcast on FTD care organized by an FTD care partner.
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, an easy to use computer application that uses webcams so we can see each other. 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.

	Mallory Bushey (651) 232-2202 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Hayley Young [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Daniela Saylor 602-406-9977 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Charles Elligson 704-442-5594 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Tanya Steel (914) 708-8801 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Scott Rose (503) 312-5404 [email protected]
	Amy Eissler Parker (503) 341-8866 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Carol Gurwell [email protected]
	Cheryl Garvey [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Dionne Coston 210-627-4726 [email protected]
	Shana Nissen 210-787-9189 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Chris Ward 713-253-5936 [email protected]
	Asad Abbasi 281-710-7811 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Barbara Loewy 518-765-2198 [email protected]
	Steph McLain (425) 686-5708 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Bonnie Shepherd (801) 231-3442 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Doris Booth 214-802-9324 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Jamie Gordon (801) 550-3563 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Stephen Fenoglio 512-347-9944 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Tiffany Turner 918-928-4700 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Lisa Radin (702) 489-2344 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Sandy Cannon 314-313-0023 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Gretchen Samuels [email protected]
	Mimi Moore [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Missey Toomey (970) 484-2542 or (970) 689-6193 [email protected]
	Andrea Maga (970) 226-1544 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Robin Riddle (650) 814-0848 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

Find Support Near You…

What happens at an FTD support group?

MN – Twin Cities (St. Paul)

KS – Topeka

AZ – Phoenix

NC – Mooresville

OH – Wellington

PA – Allentown (Daytime)

NY – Westchester County

UCSF Phone Support: Adult Children Affected by FTD

Phone Support: Parent Group

Phone Support: Men’s Caregiver Group

Phone Support: ALS with FTD

Phone Support: Language Group

Phone Support: Behavior Group 2

Phone Support: Behavior Group 1

CA – Woodland Hills

OR – Portland area

OR – Portland *Closed Grp. for OHSU clinic members only

WA – Seattle area

WA – Richland

WA – Puget Sound area

TX – San Antonio

TX – Houston area

TX – Cedar Park

TX – Fort Worth area

TX – Dallas area

UT – St. George

TX – Dallas

UT – Salt Lake City area

TX – Austin

UT – Salt Lake City area

OK – Tulsa area (*PPA Caregiver Group)

NV – Las Vegas

MO – St. Louis

CO – Littleton

KS – Kansas City area

CO – Fort Collins

AR – Little Rock *(MSA, CBD, PSP)

CO – Denver

CO – Boulder

CA – San Francisco *(those caring for loved ones with CBD/PSP)

CA – San Francisco

TN – Nashville

TN – Knoxville

CA – San Luis Obispo

CA – Los Angeles/Orange County area

SC – South Carolina regional group

CA – Sacramento

CA – San Diego

SC – Columbia

AZ – Phoenix

WI – Milwaukee

SD – Sioux Falls

OH – Toledo

OH – Columbus

OH – Cleveland area

OH – Akron/Canton area

ND – Fargo area

NC – Winston-Salem

NC – Matthews

NC – Raleigh/Cary

MN – Forest Lake/Hugo area

MI – Grand Rapids

NC – Alamance & Surrounding Counties

GA – Cumming

IA – Mason City (and Southern MN)

GA – Atlanta

IA – Des Moines

FL – West Palm Beach

IA – Cedar Rapids

FL – Tampa

IN – Merrillville

FL – Stuart

FL – Naples/Ft. Myers area

IN – Loogootee

FL – Gainesville

IN – Indianapolis

IL – Tremont

AL – Mobile/Baldwin Co.

	Joanne Robinson-Teran [email protected]
	Joanne Taylor [email protected]

	Linda Johnson 865-544-6288 [email protected]
	Sallie Gentry [email protected]

	Liz Johnston (805) 471-8102 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Donna Velarde, LCSW (949) 757-3759 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Mary Revels 803-603-2056 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Ed Fargusson [email protected]
	Sacramento Area Alzheimer’s Association 1-800-272-3900
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Maribeth Gallagher, DNP Hospice of the Valley (602) 636-2220
	Michele Grigaitis [email protected]

	Lynda A. Markut (414) 479-8800 or (800) 272-3900
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Mike Dircksen (605) 201-2298 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.

	Marian Grems (419) 377-4981 [email protected]
	This group is led by an AFTD affiliated leader who has participated in additional FTD training. Note: Before attending your first group, please contact your facilitator to affirm the date and time, as both are subject to change.