Support for People with FTD
A range of different resources are available to help people living with FTD participate in the lives of their family, friends, and community after diagnosis. The items below will help you learn about the diagnosis, make arrangements for care and find support and practical advice from peers who are also living with FTD.
AFTD’s HelpLine is here for you. You can ask about:
- Information on the diagnosis or care
- Support groups in your area
- The special online support group that AFTD convenes each month using Zoom, an easy-to-use web-camera platform
- Special closed Facebook groups just for people with FTD
- Opportunities to get involved with FTD
- Information on participating in research
For many people, adjusting to the loss of employment and other ways FTD can restrict activities is challenging. Consider ways to get involved with an organization in your community to stay engaged in the things you care about. If you are interested in volunteering with AFTD to raise awareness of FTD, or to support our mission, visit our Volunteer Network page.
AFTD Education Conference
AFTD offers an annual FTD education conference that includes people living with FTD in sessions and as speakers. This is a great opportunity to meet others living with FTD. Modest financial assistance is available through the Comstock Travel Grant program to defray the cost of travel to the conference.
Comstock Quality of Life Grants
AFTD offers modest grants to people living with FTD for help accessing services or supports that will improve their quality of life. The grants will be awarded to individuals in the U.S. with a documented FTD diagnosis. Funds can be used, with the support and supervision of a primary caregiver as necessary, for the goods or services of their choosing. Started as a pilot project in July 2017, we expect the program to continue at the completion of the pilot. For more info, visit the Comstock Grants home page.
Finding Peer Support
FTD can be a very lonely disease. Finding others who understand what it is like to live with FTD can offer emotional support and practical tips for coping in daily life. More support for people with FTD is becoming available. Some options to consider are:
Web-based (Zoom) Support Group
AFTD Support Group for People with FTD. A mutual support group that is facilitated by AFTD staff and meets monthly via Zoom, an easy to use computer web-camera platform. Contact [email protected] or 866-507-7222 for more information.
NOTE: Due to the COVID-19 pandemic, face-to-face support options listed below may not be available.
- PPA support groups. Several academic medical centers and aphasia treatment centers are developing support groups for people with primary progressive aphasia. For more information contact the AFTD HelpLine ([email protected] or 866-507-7222.)
- Younger onset or early stage dementia support groups. These can help you to accept the diagnosis, adapt and keep living. Check with the local Alzheimer’s Association or memory care center for groups in your area.
- Informal get-togethers. Increasingly, FTD caregiver groups, service providers and affected families have created ways for people diagnosed with FTD to meet informally with each other for support. Contact the [email protected] or 866-507-7222 to see if there are any get-togethers or other events in your area.
- FTD Patient Support Group on Facebook. A closed, private group that is facilitated and moderated by people diagnosed with FTD. For more info contact: [email protected].
- Primary Progressive Aphasia Group on Facebook. A closed, private group facilitated by Natasha Young.
- The FTD Support Forum offers online support for caregivers and patients.
- Dementia Alliance International. Support and advocacy of, by and for people with dementia.
- Dementia Action Alliance. An advocacy organization dedicated to changing the stigma of dementia.
- FTD Advocacy Resources Network (FTDarn). A non-profit group of people with FTD committed to helping others living with the disease.
In some cases, AFTD can help to connect people interested in peer support with another person in their area or with a similar interest. These are informal connections that individuals manage themselves. For more information contact the AFTD HelpLine (866-507-7222 or [email protected]).
Words of Wisdom
Over the years, AFTD has received words of wisdom from many people living with FTD. Here are some of them:
Accept the diagnosis, and take steps to learn about it. Visit the “What Is FTD?” section for more information and resources.
Develop a routine. FTD will almost certainly result in changes to your current daily or weekly routine, so it’s critical to develop a new structure. Try volunteering with an organization or cause you support. Do things you like and stay connected to friends. Build healthy eating, exercise and sleep habits into your routine.
Get support. FTD can be a very lonely disease. Finding others who understand what it is like to be diagnosed can offer emotional support and practical tips for coping in daily life. The best way to learn about options for face-to-face support is to contact the AFTD HelpLine at 866-507-7222 or [email protected].
Pick your battles. Not everyone will understand FTD or the effect it has on your life. Some people you think you can count on will disappoint you. Invest energy in those who listen and try to help.
Get involved. Your experiences and voice matter. Contact AFTD if you would like to work for awareness or advocate for improved services. We can help you find the right opportunity.
Mourn the losses. As you become unable to do certain tasks, acknowledge these changes and express sadness if you need to. Then refocus on what you can still do.
Be practical. No one can do this on their own. Don’t hesitate to ask others for help, to let others help you with medical appointments, meals and household tasks, finances and paperwork, transportation and companionship.
Participate in research. Volunteers are needed for research studies to advance the understanding of FTD and eventually find a cure. If you are able to participate, this makes for a vital way to contribute to a better future.