No matter where you are within your journey, FTD can bring about complicated feelings of grief and loss that may be difficult to recognize, process, and explain to others who have not experienced this disease firsthand. To help navigate those feelings, AFTD has developed several resources focused on grief and the FTD journey.

Published by AFTD in 2020, Walking with Grief: Loss and the FTD Journey draws from personal interviews and discussions with people living with FTD, their care partners, and family members, and can help in navigating anticipatory grief, and the gradual losses experienced throughout the FTD journey.

“For many individuals and families facing FTD, the disease is so all-consuming that they lack time to tend to their own grief,” explains AFTD Support Services Manager Bridget Moran-McCabe. “Grief is intensely personal – it’s different for each individual – and yet, it’s something everyone must find time to honor, particularly given the unique losses presented by FTD.” Walking with Grief can help people affected by FTD to acknowledge and reflect on their grief by identifying with the stories of others who have lived through similar experiences.

Elaine Rose, a long-time AFTD volunteer and former FTD care partner, says that the process of contributing to the booklet helped her to cope with the death of her husband who had FTD. According to Elaine, “grief is never easy, but the long goodbye of FTD is especially difficult. It can be such a solitary journey, so we’ve tried here to give guidance and a road map to staying whole throughout the process.”

AFTD’s recent educational webinar, Living the Grief of FTD: The Winding Paths of Loss, Love, and Resilience, presented by Mary O’Hara, LCSW, is a helpful companion to our grief booklet. The webinar shares information about the losses experienced by those affected by FTD. By learning how to identify and name the various types of loss, you will be better equipped to express your own complicated and ambiguous emotions.

Regardless of where you are in your journey, AFTD’s grief resources can help open up conversation between family and friends, while providing points of connection with others who share similar experiences. These tools can be shared in online support forums and used in support group settings, to help all who are grieving to know they are not alone.

We invite you to:

• Download Walking with Grief today (PDF) or order a physical copy through the AFTD store
• View AFTD’s educational webinar, Living the Grief of FTD: The Winding Paths of Loss, Love and Resilience