Dear HelpLine,
My brother was diagnosed with FTD. I see that AFTD offers support groups, but I’m not sure who they are for, or which one is right for me. Can you help me understand my options?
AFTD strives to support FTD care partners, the close family members and friends who provide care to persons diagnosed. One way to get support is by connecting with other care partners. These connections can be a lifeline, offering an understanding ear, practical suggestions and strategies, and important resources.
AFTD offers several ways to connect with other care partners:
Local and Regional Support Groups
National Zoom Support Groups
For primary care partners who cannot access a local or regional support group, AFTD offers national Zoom support groups: two are focused on FTD’s behavioral symptoms, and one is focused on language symptoms. (A primary care partner is the person most involved with supporting the person diagnosed; they may also be the person’s designated decision-maker.)
To find out more about these groups, reach out to the AFTD HelpLine.
Specialty National Support Groups
AFTD also offers national Zoom support groups for primary care partners and family members in these specific caregiving situations:
- Primary care partners who are parents with school-aged children
- Men who are FTD care partners
- ALS and FTD primary care partners
- Persons with a history of familial FTD
- Persons with a confirmed genetic risk of FTD
- LGBTQIA+ care partners
- Care partners for a loved one with PSP experiencing FTD behaviors
Young Adult & Adult Children Support Groups
Online Social Media Supports
AFTD’s closed Facebook group is another way to connect with care partners, persons diagnosed, and others with a connection to FTD. Members can post about their own experiences and respond to discussion items in the Facebook group. People with individual questions about FTD or managing care can reach out to the AFTD HelpLine.
AFTD has also established a young-adult Facebook group for people in their 20’s and 30’s who have a family member or loved one with FTD. We hope this group offers a supportive environment where people can feel comfortable sharing their feelings and experiences. This is considered a “secret” group, and thus cannot be found by searching on Facebook. To learn more, please email [email protected].
The landscape of support is always evolving as more support groups form and more opportunities become available on social media. Reaching out to the AFTD HelpLine team can assist in finding the group that best fits your needs. Please call or email the HelpLine at 866-507 7222 or [email protected].
Leave a Reply