Earlier this week, The Association for Frontotemporal Degeneration (AFTD, theaftd.org) hosted a webinar for FTD caregivers called the “Care Paradigm.” The speaker at the January 12, 2017 webinar was Alvin Holm, MD, Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota.
An FTD caregiver named Sharon Hall listened to the webinar and thought it was worthwhile. She posted to an online FTD support group her takeaways. She gave her permission for me to post her takeaways here.
Robin
Sharon’s Takeaways
A Care Paradigm for Persons with FTD
AFTD Webinar, January 12, 2017
1. 40% of FTD caregivers have clinical depression, bvFTD caregivers are an even higher number.
2. With bvFTD environment is EVERYTHING it is the most important aspect of management.
3. The physical environment must be stable and predictable.
4. The expectational environment (what we expect of them) must be realiistic.
5. We can’t expect a person with a brain disorder to be or act normal, we need to adjust our environment.
6. Care within a home can’t be controlled enough. In a home you must limit noise, do not over stimulate, and remove clutter.
7. FTD is 200x less prevalent than Alzheimers.
8. Learn everything you can about FTD and advocate, advocate, advocate.
9. You need to interface medicine (GP), Psych and neurology. All have to communicate.
10. Most doctors have never heard of FTD. You must educate.