Saturday, December 1, 2012

FTD Support Groups and Medical Centers

There are few FTD specialists in the country, especially if your outside a major metropolitan area. I'm attaching links to the U.S. and Canadian AFTD pages which has a maps to show you where to find help. You can choose either  Medical Centers which have support for FTD or FTD Support Groups for caregivers. 

Please click on the following links:

AFTD - Canadian FTD Medical Centers & Support Groups

AFTD has a helpline 866-507-7222 for any questions you might have about resources and support.

In Australia, the Dementia Behavior Management Advisory Service 1800 699 799 is available 24 hrs. a day for patients and caregivers.
The Australian National Dementia Helpline 
1800 100 500
8:30 - 4:30pm weekdays.

If you can't find a doctor familiar with FTD in your area, interview the local doctors and find someone willing to learn about FTD. If there no support groups for caregivers in the AFTD list, call the local Alzheimer's Association. Your local Alzheimer's association might also have, or know of a support group that an FTD patient can attend. 

If there's no support group in your area, well someone needs to start one. AFTD will help you organize starting one in your area. I wouldn't be writing or would've survived without my support group, Riverstone's Memory Club. It gave me the tools to exist with FTD.

If there are no face to face support groups, there are online groups. 

For caregivers, the FTD Support Forum is a large online group.

FTD Support Forum

There are many FTD and FTD/Dementia Facebook support groups you can join. This is the fastest growing segment of support.  Just put the name in the Facebook search engine. There are also closed private groups.

Facebook is easy to join and takes 5 minutes. If you join, that doesn't mean your a yuppy or your life will change forever. Facebook has gone beyond just being a place for kids and now is a source for meeting others in your position. 

Facebook  Support Groups
Association for Frontotemporal Degeneration
Defeat Dementia
Dementia Aware
For the Kids of Parents with FTD / Early onset dementia
Frontal Lobe Dementia

Closed  Facebook Groups 
Primary Progressive Aphasia Support Group - For patients, relatives, friends of PPA Patients. Medical personal welcome.
Natasha Young:

FTD Patient Support Group - 
For firmly diagnosed FTD Patients
Contact Howard Glick:

Early Stage Alzheimer's / dementia support group - For firmly diagnosed Dementia Patients
Contact: John Sandblom:

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  1. Dementia/FTD Support Group in Nottinghamshire UK
    Thankyou Freda

  2. Wishing you a great day.
    The waiting to see the doctor is the hardest! Will try to see her next week.. Almost 2 weeks since hearing those dreadful words from the psyco-neurologist, er, neuropsychologist, I mean! Then making an appointment with southwestern medical center neurology department in Dallas.. I found doctor list online. I guess I'm throwing darts to pick a good one. Know of a referral service for a knowledgeable dr? has links for places to go, but I'd like to find an individual dr thru referrals..

    1. Hi Corrina,
      Found this link for you for help with FTD in Dallas.

  3. Hi Corina,

    There's a San Antonio based organization called FTLDA Frontotemporal Lobar Degeneration Association
    FTLDA is run by a couple of shining stars from Texas, Terry Bratton-Schultz whose husband had FTD and Sarah Oxford. They have helped others in amazing ways. Check out there website (above) and give them a call.

    Terri Bratton-Shultz

    Sarah Oxford


    In Texas, I've heard consistent excellent feedback on Dr. Paul E. Shultz. He is a Neurologist out of University of Texas, Houston. Dr. Shulz specializes in FTD and there FTD program is one of the best in the country. I don't have his number off-hand, but FTLDA has close ties with him (he's on there Scientific Board).
    Hope this helps,

    1. Interesting Article..........
      Commented by: - Find Medical Conferences World Wide.

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  5. Execellen !
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