I Have FTD
“Just because your condition worsens, doesn’t mean your life is over. You
just need to adapt and work around whatever symptoms and complications
get in your way. You’ve a right to live a life with happiness and purpose.”
Suggestions from people with FTD for people with FTD (and their family and friends)
Accept the diagnosis. That is what lets you begin to adapt and rebuild and go on living.
Learn about your diagnosis. Gather information and resources for yourself and to give to others.
Mourn the losses. Acknowledge the changes as you become unable to do as many things. Express the sadness and then refocus on what you can still do.
Think of the symptoms as disabilities. Develop strategies to adapt and manage the symptoms as you would a physical disability. Find a different way to do what you need to or want to do.
Create a team of family, friends, and professionals who you trust to help you as your needs change.
Plan ahead. Complete your powers of attorney, advance health care directives and will right away so you have the greatest say possible in these legal matters.
Develop a routine. One of the big adjustments is the loss of a career or regular daily structure. Think about new ways to use your experience. Maybe mentor others in a lower stress environment, or volunteer with an organization or cause you support. Do things you like and stay connected to friends.
Build healthy eating, exercise, and sleep into your routine. A heart-healthy diet and regular exercise have many general health benefits. Try meditation, yoga or other techniques to manage stress.
Find support. Options are increasing to find other people with FTD and early stage dementia for support. See the Resources section below.
Be practical. Let others help you with medical appointments, meals and household tasks, finances and paperwork, transportation and companionship.
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.
Address changing relationships. Interpersonal relationships are changed by FTD and other dementias. Open communication and patience are needed to adjust and create new relationships.
Not all people diagnosed with FTD have a caregiver to turn to. FTD affects many single people who manage the disease alone as long as they can. Creative systems and supports are needed.
Get involved. Your experiences and voice matter. Let family, local providers and AFTD know if you would like to work for awareness or advocate for improved services. They can help you to find the right opportunity.
Participate in research. Volunteers are needed for research studies to advance scientists understanding of the diseases and to a cure. If you are able to participate, this is a wonderful way to contribute to a better future.
Visit additional pages in this section for more on:
- Finding support for people with FTD
- My Experience – in Words – stories and descriptions of life with FTD
- My Experience – in Images – artwork, photographs and other visual expressions from people with FTD
- Strategies for coping – ideas submitted by others with FTD for how to make life more enjoyable