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.
AFTD - Canadian FTD Medical Centers & Support Groups
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
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: email@example.com
FTD Patient Support Group -
For firmly diagnosed FTD Patients
Contact Howard Glick: firstname.lastname@example.org
Early Stage Alzheimer's / dementia support group - For firmly diagnosed Dementia Patients
Contact: John Sandblom: email@example.com
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