Support for Care Partners

AFTD helps FTD care partners forge meaningful connections with one another. These relationships can be a lifeline, providing emotional support, practical caregiving tips and strategies, and the simple knowledge that you are not alone. Knowing that there are others who understand the challenges you face as an FTD care partner can make a world of difference.

Here are some ways to get connected, and to get the support you need:

In-Person Support Groups

A growing number of FTD support groups – many of which are led by an AFTD-affiliated support group leader – are emerging throughout the U.S. and Canada. To look for an option or options near you, visit the In Your Region section of our website.

AFTD Telephone Support Groups

For care partners who live far away from an active in-person support group, AFTD sponsors special telephone support groups, led by experienced facilitators. Each monthly group has a slightly different focus based on the main care challenge:

  • language and communication symptoms
  • behavioral symptoms
  • caring for a spouse/partner while there are children in the home
  • caring for a loved one with FTD/ALS
  • men’s caregiver group

For more information, contact AFTD’s HelpLine at 866-507-7222 or info@theaftd.org.

Informal Connections

AFTD can 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 info@theaftd.org.

Facebook

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 youngadults@theaftd.org and include the email address you used to open your Facebook account.

AFTD Comstock Grants

Through the Comstock Grant program, AFTD provides monetary support to help full-time, unpaid caregivers arrange short-term respite (or to arrange travel to/from AFTD’s yearly Education Conference).

Additional Links

The FTD Support Forum: An online forum open to caregivers and persons diagnosed with FTD or a related disorder.

FTD Spouse Caregiver Support Yahoo 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.