Dear HelpLine: Looking for Support Options

March 8, 2024
Graphic: Dear HelpLine - Looking for Support Options
Dear HelpLine,
Our family is looking for ways to connect with other FTD care partners for support. What options are available?
A core part of AFTD’s mission is to help FTD care partners access the support they need. One way to get support is by connecting with other care partners. These connections can be a lifeline, offering emotional support, practical problem-solving strategies, and important resources. There are several ways to connect with other care partners:

Local and Regional Support Groups

Local and regional support groups for FTD care partners are active in many areas of the country. Some meet in person, others virtually. To see a list of support groups, select your state from the drop-down menu on AFTD’s Support Group home page. (There are also resources available for those living in Canada.) If there is a group in your area or region, reach out to the support group volunteer to find out more about current meetings.

Support options for persons living with FTD can also be found on AFTD’s website.

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. To find out more about these groups, reach out to the HelpLine.

Specialty National Support Groups

AFTD also offers national Zoom support groups for primary care partners and family members in specific caregiving situations listed below. To find out more about the groups listed below, reach out to the HelpLine:

•    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

Young Adult & Adult Children Support Groups

AFTD sponsors a monthly national Zoom support group for young adults who have a parent with FTD, and another monthly group for adult children (40+) who have a parent with FTD. To find out more about these options, reach out to the HelpLine or visit your state page.

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 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 youngadults@theaftd.org.

The landscape of support is always evolving as more support groups form and more opportunities become available on social media. Reaching out to AFTD’s HelpLine team can assist in finding the group that best fits your needs. Please call or email the HelpLine 866-507-7222 or info@theaftd.org.

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