Help & Support #84: Navigating a New FTD Diagnosis

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Too often, those who are newly diagnosed with FTD are told that there is nothing they can do, and are left feeling helpless and hopeless. However, researchers learn more each year and move closer to discovering effective treatments. Information and resources are expanding. Support is available. AFTD is here to make navigating the early days after an FTD diagnosis more manageable.

The Doctor Thinks It’s FTD. Now What? is a booklet (available on our website as a pdf download) that AFTD created to offer persons diagnosed and their families helpful guidance on managing a new diagnosis. It provides an extensive overview of FTD and its various subtypes, the stages of disease progression, suggestions for preparing for medical visits, and additional advice about providing the best care possible for persons diagnosed. It also includes comprehensive checklists for those diagnosed and their care partners to aid in creating a care team, accessing community services and resources, addressing safety concerns, and establishing a positive daily routine.

For those who are further along in their FTD journey, The Doctor Thinks It’s FTD. Now What? can be a useful tool for understanding legal and financial issues, finding an attorney, preparing a living will, or appointing a power of attorney. Copies of the booklet can also be shared with secondary caregivers, extended family members, and friends who may not be fully aware of all that an FTD diagnosis entails. This guide will help educate loved ones on how to address FTD-related challenges and what to expect as the disease progresses.

It’s important to remember that you don’t have to face this journey alone. AFTD is here to support and guide families impacted by FTD every step of the way. Download The Doctor Thinks It’s FTD. Now What? booklet here or order a print copy for your home or office here. For more information on navigating a new FTD diagnosis, visit the Newly Diagnosed page on the AFTD website. You can also access information and support by contacting AFTD’s HelpLine via telephone (1-866-507-7222) or email (info@theaftd.org).

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