The news last week that beloved actor Bruce Willis is living with FTD has sparked a surge of FTD coverage by media outlets around the world. Stimulating greater awareness and understanding of FTD is one of the key aspects of AFTD’s mission, and we are grateful that the attention paid to Mr. Willis’s diagnosis has introduced millions to this disease. But we also want to acknowledge that, for many in our community, seeing FTD foregrounded in the national conversation has reawakened or intensified the feelings of grief and loss that an FTD diagnosis brings.

If you have found yourself struggling to process the recent news, AFTD’s Walking with Grief: Loss and the FTD Journey may help. Walking with Grief is a 48-page booklet that combines the stories of people living with FTD – whether as a care partner, a former caregiver, or a person diagnosed – with practical advice and words of encouragement. It provides readers with coping strategies to help address their grief – and, crucially, permission to take time to do so. “Grief is something everyone must find time to honor, particularly given the unique losses presented by FTD,” said Bridget Moran-McCabe, MA, AFTD Support Services Manager.

Walking with Grief is an important resource for all FTD families, at every stage of the disease. In fact, the grieving process in FTD often begins early in the disease process, long before the loss of a loved one. Families may find themselves caring for someone whose personality and behavior has changed dramatically, while those diagnosed mourn the independence and abilities they have lost and struggle with how their diagnosis affects those around them. Walking with Grief highlights this phenomenon, known as “ambiguous loss,” a term coined by grief expert Dr. Pauline Boss. Combined with a related phenomenon called anticipatory grief – imagining life without a person before they have died – ambiguous loss is a defining characteristic of FTD, and among the most difficult for families to grapple with.

While grief is different for everyone, Walking with Grief provides a roadmap for negotiating the losses and challenges unique to FTD. Click here to download the PDF. You can also order a physical copy by visiting the AFTD store.

Another resource that you may find helpful at this time is “Living the Grief of FTD,” an AFTD Educational Webinar first presented in 2020. Mary O’Hara, LCSW of the University of Colorado explores the unique experience of living with grief during FTD, processing grief after an FTD death, and discovering ways to move forward and deepen our wells of resilience. You can also read this 2022 article by Mary O’Hara, about ambiguous loss and FTD, including six tasks to help build resistance.

Persons living with an FTD diagnosis who are struggling with grief may benefit from “It’s FTD: Navigating the Emotions of a New Diagnosis,” a session from AFTD’s 2021 Education Conference presented by Mary O’Hara.

We also encourage you to reach out to the AFTD HelpLine (info@theaftd.org, 866-507-7222) if you would like someone to talk to and help process your emotions.