Support for Caregivers

Connecting with other FTD caregivers can be a lifeline for emotional support, practical problem-solving and finding resources. Sharing with people who understand the challenges you face caring for someone with FTD can make a world of difference.

Below are various support options you can explore to determine which best meets your needs. People with FTD seeking support should visit the section, I Have FTD.

Local Face to Face Support Groups

There are a growing number of in-person FTD support groups across the US and Canada.  We list the contact information for groups we are aware of on our website. To see a listing of FTD support groups in your region, visit the Get Involved section and click In Your Region.

AFTD Telephone Support Groups

The number of local support groups is growing, but still doesn’t begin to meet the need.  AFTD sponsors telephone support groups for caregivers who are not able to access a face to face group.

The small groups meet monthly via a toll-free conference call and led by experienced facilitators. Each group has a slightly different focus based on the main area of challenge for the caregiver: language and communication symptoms, behavioral symptoms, or people caring for a spouse/partner who have children at home.

For more information about one of the phone support groups contact AFTD’s HelpLine at [email protected] or 866-507-7222.

Informal Caregiver Connections

Sometimes AFTD can match FTD caregivers in a particular city or region through information they share when they register. It is an informal connection that can be helpful if there are no face-to-face groups available. AFTD identifies people in the network who are in a similar situation and within a reasonable distance from you. After agreement by both parties, AFTD shares a name and a contact number or email, but no other personal information.  You take it from there. To request a search, please contact AFTD’s HelpLine at [email protected] or toll-free 866-507-7222. You can also register with AFTD on-line.

Online and Social Networking Resources

Facebook Resources
AFTD has a Facebook page to keep followers up to date on events, research, and the latest news.  AFTD also has a Facebook group where members are invited to post their experiences and respond to discussion items on the page. Specific medical questions should still be directed to the HelpLine at [email protected] or 866-507-7222.

AFTD also offers a young adult Facebook group for people in their 20s and 30s who have a family member or loved one with FTD. This group serves as a supportive online forum and gathering place for young adults. To join the “secret” group, please email [email protected] and include the email address you used to open your Facebook account. You can expect an invite to join the group within a week.

The FTD Support Forum
An online support resource – not affiliated with AFTD – that is open to both caregivers and those diagnosed with FTD or a related disorder.  This site is operated independently and monitored by caregiver volunteers dedicated to making such support widely available.

FTD Spouse Caregiver Support Yahoo Group
An independent, online, peer support group committed exclusively to the spouses of those diagnosed with frontotemporal degeneration and early-onset dementias.

AFTD’s Helpline

The HelpLine is available to help find the information, resources and support you need.

Email:     [email protected]
Phone:   1-866-507-7222 (toll-free) Please leave a message and we will return your call, generally within two business days.

Additional Resources

AFTD’s Comstock Respite and Travel Grant Program provides grants to help full-time, unpaid caregivers to arrange short-term respite. Making sure to have some time for yourself is an important aspect of support.

Lotsa Helping Hands powers free online caring communities that provide tools to organize daily life during times of medical crisis or caregiver exhaustion. They facilitate an Open Community model to connect caregivers, individuals, and families who need help with those who want to lend a helping hand.

The Well Spouse Association (WSA) is a non-profit, self-help, and volunteer-based organization whose mission is to provide peer emotional support and information to the husbands, wives and partners of the chronically ill and/or disabled.  WSA offers local area support groups, mentors, respite weekends, an online forum, and more. Call WSA at 1-800-838-0879 to learn more.

 

Useful Links:
In Your Region
To register with AFTD