Advance care planning is a process that ensures your end-of-life healthcare preferences are documented and honored in the event that you become unable to communicate your wishes. The process can be emotional, complicated, and uncomfortable. But advance care planning is important, and every adult should consider it – especially those who have been diagnosed with FTD.

While documentation and terminology vary by state, advance care plans typically record a person’s choices regarding life-sustaining treatments, comfort and hospice care, funeral arrangements, and brain donation or autopsy preferences. They can also involve designating a healthcare agent to make medical decisions on behalf of an individual, should they become unable to themselves.

In FTD, it is crucial to start conversations around advance care planning as early as possible, ideally when the person diagnosed is still capable of making their own decisions. If they are unable (or unwilling) to engage in advance care planning, their loved ones should prepare to make advance care plans on their behalf. This includes learning about available treatment options and considering the person’s past preferences to guide choices that align with their values.

But to whom can families turn for help? Elder law attorneys are a valuable resource for completing advance care plans and other essential documents. They can help navigate complex regulations and ensure that all documents align with state laws and individual needs and preferences.

Healthcare providers can also be valuable resources by providing education on treatment options and discussing the implications of various care options. Their expertise can help individuals make informed decisions that reflect their personal values and medical needs.

The list at the end of this article includes other valuable resources to help guide conversations around advance care planning and prepare the necessary documentation. Once completed, copies of those documents should be given to loved ones and your healthcare providers.

All 50 states, plus Washington, DC, have implemented a program called POLST, which helps individuals with serious illnesses or their healthcare agents document their care preferences, in consultation with their healthcare providers. Through POLST, people can identify their preferences for life-sustaining treatment (for example, whether they want to receive CPR or a feeding tube) in a document called a POLST form. POLST forms can be used in addition to existing living wills or advance care documents. Use the POLST website to learn more about the program in your state; your state’s POLST program may go by a different name. In New York , for example, it is called MOLST, while in Vermont it is known as COLST.

Finally, AFTD’s HelpLine offers guidance and resources for persons living with FTD, care partners, and family members in navigating these essential documents and tools. If you have questions or need support, you can reach out to the HelpLine at 1-866-507-7222 or info@theaftd.org.