Going to any medical appointment can be overwhelming, from the stress of getting there on time to worries about being able to ask your questions and share your concerns. The pressure can be especially acute when going to a first appointment to see a new provider. Sometimes, you may arrive at the appointment fully prepared to find some answers but leave disappointed if it does not address your concerns. Before going to an appointment, it is beneficial to consider questions you need to be answered and gather documents and resources to help make the appointment as successful as possible.

To best prepare for your appointment:

• Start by identifying an overall goal for the appointment, such as the next steps for evaluation, discussion of medications, or questions about FTD.
• Write down a list of any changes you or your care partner observed (behavioral changes such as personality or mood changes).
• Create a behavior chart or log documenting the timeline of any observed changes (you might consider AFTD’s Behavior Tracker).
• Make a list of other underlying medical conditions (ex: diabetes or mental health conditions like depression).
• Write down a list of currently prescribed medications and supplements being taken.
• Bring copies of any advance directives already put in place
• Bring any previous test results, including imaging studies such as an MRI or a PET scan, for the doctor to review. Consider bringing other family members who share your concerns or can help you feel comfortable and make the appointment easier.

An appointment is also your opportunity to ask any relevant questions about FTD. Before going to your appointment, consider topics such as:

• The anticipated stages of FTD, life expectancy, how to best support your loved one, and how to best prepare for future care needs.
• The impact of the disease on your overall health and life expectancy (if you are a care partner).

• Family medical history and the possibility of an inherited form of FTD

You may also want to ask about current treatment, research, and care planning. Try asking your doctor about topics like:

• Available treatment options (such as non-pharmaceutical physical, occupational and speech therapies, or holistic/healthy lifestyle choices)
• What opportunities may be available through participation in research, including observational natural history studies such as ALLFTD or clinical studies for experimental therapies. You might also ask about opportunities through organizations like the FTD Disorders Registry.
• Building a healthcare team of professionals (including social workers, geriatric care managers, and behavioral health specialists).
• What advice do they have about advance care planning and FTD (which includes drafting documents like living wills, advance directives, and power of attorney)

If you ever find yourself overwhelmed with preparing for a major appointment, reach out to AFTD’s HelpLine for guidance on what to do. Contact the HelpLine at 1-866-507-7222 or info@theaftd.org.