I have been a volunteer with AFTD – The Association of Frontotemporal Degeneration – for about a year now. FTD is one of the forms of dementia that I talk about when I am doing training for professional staff in nursing homes or assisted living communities, as well as college students and community leaders., etc. It’s not as common as Alzheimer’s disease, but the association indicates there are 50,000 – 60,000 people in the USA currently living with FTD.
FTD affects people in their late 50’s or early 60’s. But people have been diagnosed in their 20’s. It is part of a group of diseases that fall under the FTD category. It presents differently than Alzheimer’s disease and is difficult to diagnose. We see three forms of this disease where either one or all forms may affect the person: behavior and personality changes, language issues and poor motor coordination. Memory loss tends to develop at a later stage of the disease. People may live as long as 10 years, but generally death comes 6-7 years after diagnosis.
Currently there is no support group in the state of Rhode Island specifically for caregivers of patients with some form of FTD. Through the Association of Frontotemporal Degeneration, I will be the facilitator for a new support group that will be forming in the fall of 2015. Our first meeting will be in November. Specific day, time of the week and location to be announced shortly. If you are a caregiver for someone who has been diagnosed with this disease, please contact me for more details regarding the support group. You can reach me at firstname.lastname@example.org.
If you are looking for in-depth information please refer to www.theaftd.org as well as www.nih.gov.