Daily life can be a challenge for people living with frontotemporal degeneration (FTD). There are resources available to help you and your family cope. The following will help you learn to manage symptoms, handle day-to-day issues, plan for the future, and more.
The Association for Frontotemporal Degeneration (AFTD) is an advocacy organization with a mission to improve the lives of people affected by FTD. Its website offers resources for living with FTD:
- A guide for managing a new diagnosis titled, "The Doctor Thinks It's FTD. Now What?"
- Information on managing FTD with tips to handle symptoms, cope with FTD, and more.
- Resources on coordinating care for FTD to help you find the right healthcare professionals and community services and plan for long-term care and hospice.
- Materials on legal and financial planning to help you find a lawyer familiar with elder law or financial help.
- A publication titled, "Walking with Grief: Loss and the FTD Journey (PDF)" with information to navigate the grief journey in FTD from interviews and discussions with dozens of people with FTD, care partners, and family members.
- An 18-minute video called "It Is What It Is," which follows four families as they confront FTD.
CurePSP is an advocacy organization working to improve awareness, education, and care for prime of life neurodegenerative diseases. Its website has the following resources:
- A list of books and personal stories that share what is like to live with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD).
- An Estate Planning Guide (PDF) that includes step-by-step instructions to help you create and manage an estate plan.
- The CurePSP YouTube channel that offers webinars on topics such as "How to Prepare for Your Appointments," "The Benefits of Staying Active," "Building a Support Network," and more.
The University of California, San Francisco's Weill Institute for Neurosciences is a medical center dedicated to the diagnosis and care of people with degenerative brain diseases. Its website offers:
- An information page with tips for daily life to help with communication, bathing, grooming, eating, sleeping, and more.
- Materials on behavior and personality changes with tools to understand, deal with, and respond to common behaviors.
- A 10-step process for planning care.
- Information on medical, financial, and legal planning.
The FTD Disorders Registry has published articles on living with FTD, such as:
- Enjoying the Holidays When a Loved One Has Dementia
- The Value of a Second Opinion
- A Healthy Lifestyle May Slow Familial FTD
- Creating Dementia-Friendly Holidays and Celebrations
- Voice of the FTD Patient Report
- FTD Insights Survey Results
- FTD Insights Survey Results: African American Experience
- FTD Insights Survey Results: Latinos Perspectives
- Registry Reports FTD Data at AAIC Meeting
** Any resources that the FTD Disorders Registry (FTDDR) provides are for informational purposes only. FTDDR is not responsible for and does not endorse the materials at the linked sites. Advice regarding your personal medical management should be obtained through consultation with a healthcare provider who is familiar with your medical history.