DOCTOR NOTES / FAMILY GUIDES3 min read · Educational resource

FTD Guide · Chapter V

For People Living with FTD

Staying active, engaged, and supported after a diagnosis.

If you’ve been diagnosed with FTD and you’re reading this — you’re still here, you’re still you, and there are things that can help. FTD affects everyone differently. Many people live for years with a good quality of life, especially when the right support is in place. The key is setting up those supports now, while you can, and being open with your family about what’s changing and what you need.

Stay active.

The same exercise research applies. Physical activity is linked to slower decline. Build activity into your daily routine to fight apathy — which is a symptom, not laziness. A walk, swimming, gardening, or dancing all count. The point is moving regularly and doing things you used to enjoy, even if they feel harder now.

Keep your brain engaged.

Puzzles, music, conversations, learning — these all matter. Here are tools that help:

  • SingFit — Music therapy app that uses familiar songs with prompts to help you sing and connect with memories.
  • BrainHQ — Brain training designed by neuroscientists with the strongest research base for cognitive exercises.
  • Constant Therapy — From Boston University. Speech, language, and cognitive exercises. Especially useful if you have Primary Progressive Aphasia (PPA).
  • MindMate — Games, exercises, and nutrition tips designed for people with dementia.
  • Peak — Brain training backed by research from Cambridge and Yale.

Simplify your surroundings.

Less clutter means fewer things to keep track of. Use labels on drawers and cabinets. Keep a calendar in a visible place. Set phone reminders for medications, meals, and appointments. These small changes make daily life easier and less frustrating.

Record your doctor visits.

Doctor appointments go fast and it’s easy to forget what was said. Recording lets you listen again later. Doctor Notes was built for exactly this — record the visit on your phone, and the app gives you a plain-language summary afterward. You can share that summary with family members who want to stay informed.

Talk to your doctors about medications.

No drug cures FTD yet, but certain medications can help with symptoms. SSRIs like citalopram or sertraline can help with behavioral changes and mood. Trazodone can help if you’re restless or agitated. Every person is different, so talk to your neurologist about what might help you.

Heads up. Alzheimer’s medications are NOT recommended for FTD. Drugs like donepezil (Aricept) and memantine (Namenda) are for Alzheimer’s disease. They are not recommended for FTD and can actually make things worse. Make sure every doctor you see knows you have FTD, not Alzheimer’s. This distinction is critical.

Connect with others.

Support for the next step. The AFTD runs monthly Zoom support groups specifically for people living with FTD. It’s a chance to hear from others who understand what you’re going through. Find a group near you.