For Caregivers
Practical tools for managing appointments, staying organized, and getting real help.
If you’re caring for someone with FTD, you already know this disease doesn’t just affect one person. It changes the whole family. You’re probably going to appointments with multiple doctors. You’re telling the same story over and over to each new provider. You’re trying to keep everyone in the family updated. And you’re doing all of this while watching someone you love become someone you don’t fully recognize. Here’s what helps.
Before every appointment, write down three things:
- What has changed since the last visit (behavior, sleep, eating, mood, movement)
- What medications they’re taking right now (bring the bottles or take a photo)
- The one question you most need answered today
This sounds simple. But when you’re exhausted and overwhelmed, writing it down ahead of time means you won’t go blank when the doctor asks “how have things been?”
Record the visit.
Doctors talk fast. They use medical words you might not know. They mention next steps you’ll forget by the time you reach the car. A recording lets you go back and listen again. You can share it with family members who weren’t there.
Doctor Notes was built for exactly this. You open the app, tap record, and set your phone down. After the visit, the app gives you a written summary. It pulls out the key medical terms and explains them in plain language. You can share that summary with your spouse, your siblings, or the rest of the care team so everyone has the same information.
Keep a simple weekly log.
Not a journal. Just a few quick notes each week about what you’re seeing. What’s changed? What’s getting better or worse?
You are not alone in this.
The AFTD HelpLine (866-507-7222) is staffed by social workers who know this disease. Find support groups.
When people offer to help, give them something specific.
Most people say “let me know if you need anything.” Tell them:
- Pick up the prescriptions
- Drive to the Tuesday appointment
- Take my kid to soccer on Tuesdays
- Sit with my person for two hours so I can sleep
- Set up a Meal Train so neighbors can sign up to bring food. Also try Care Calendar and Lotsa Helping Hands.