Grief, like the FTD journey itself, is intensely personal. Its impact is pervasive – both wide and deep – but there is no one-size-fits-all way to describe it. You’ve likely read or heard grief described as progressing through a series of stages. Other resources depict grief as a continuous journey that does not ever cleanly resolve.

You may find that the reality lies in between. What’s clear is that grieving for the losses brought on by FTD can bring unique challenges. Loss can arise in multiple, compounded ways across this journey, from the struggles and isolation of the time prior to diagnosis, to the day-to-day challenges of navigating life with this disease, through to the death of the individual affected by FTD, and beyond.

In Walking with Grief: Loss and the FTD Journey, AFTD has drawn from interviews and discussions with dozens of people with FTD, care partners, and family members, to provide you with a guide to navigating the grief journey in FTD. Details have been condensed and changed in some instances to preserve the confidentiality of those who so kindly shared their perspectives with us.

These stories draw primarily from the experiences of primary care partners, referred to where appropriate as caregivers, but we have also sought to capture the perspective of persons with FTD where possible.

While the perspectives offered on FTD in this resource are likely to differ in some instances from your own, we believe that you will also be able to identify with many of them. We hope that it will provide you with solace for this journey. In the stories, you’ll read examples of people turning to AFTD and other resources for practical help on this journey.

A full electronic version of the booklet can be found here.