Connecting with Others

People have different needs and preferences when it comes to connecting with others.  You may want support, but don’t feel a structured caregiver support group is the answer.  And there are still many areas where organized supports for FTD caregivers are not available.  AFTD can help you to find what you need. 

Informal Caregiver Connections

Would you like to meet others in your area who are also caring for someone with FTD?  Because FTD is relatively rare it may be difficult to find people who share your concerns.  Cities rich in resources such as medical centers or support groups may make that easy, but in some places it can seem impossible.   

AFTD can help you to connect informally with other caregivers.  Register with us and indicate that you would like to connect with others for support. When we are contacted with a request, we search our mailing list.  Then, while fully protecting confidentiality, we reach out to people by email and if both parties agree, share contact information and let them take it from there.    

Don’t face FTD alone – register and connect.

On-line and Social Networking Resources

AFTD is on Facebook!  The Association has a Facebook group to promote FTD advocacy and awareness (search for ”Association for Frontotemporal Dementias” or “AFTD”).  Members are invited to post their experiences with the disorders and responses to discussion items on the page, but should still direct specific medical questions to info@ftd-picks.org or our toll free HelpLine 866-507-7222.

There are several different networks of support that are not specifically AFTD-sponsored, but may be convenient for you and serve some of your needs.

The FTD Support Forum  is an online support resource that is open to both caregivers and those diagnosed with FTD or a related disorder.   This site is operated independently and monitored by several caregivers dedicated to making such support widely available.  
 

Defeat Dementia, is an open Facebook group under the auspices of UCSF Memory and Aging Center that deals with issues related to Alzheimer’s, FTD and related dementias.

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