Other Caregiver Supports

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

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.  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 page, where the Association will keep followers up to date on events, research, and the latest news at AFTD.  AFTD also has a Facebook group, where 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@theaftd.org or our toll free HelpLine 866-507-7222. 

The FTD Support Forum is 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 (FTD or FTLD) and early-onset dementias.

Website for Caregiversmarymac missions is a website designed to help caregivers remember to care for themselves as well as their loved on.  Mary MacDonald provides tips, breathing exercises and encouraging words for those feeling the stress and strain of caregiving.

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.

Other Caregiver Support Options

Lotsa  Helping Hands
Lotsa Helping Hands, powers free online caring communities that provide tools to organize daily life during times of medical crisis or caregiver exhaustion. They host more than 60,000 Private Communities that are hard at work supporting caregivers across the U.S., and we’ve recently launched 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)
A 501(c)(3) 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 is the only national organization which focuses exclusively on spousal caregivers.  WSA offfers local area support groups, mentors, respite weekends, an online forum, and more.   (1-800-838-0879)