In a recent episode of Honestly Aging by Friends Life Care VigR®, AFTD Support & Education Director Esther Kane, and AFTD Ambassador Liz Zadnik shared a mic with host Cheryl Proska for an honest, compassionate look at what it means when FTD is diagnosed, and where hope, support, and understanding can be found.

In the interview, Kane offers expert insight into navigating the FTD journey: the search for a diagnosis, building a support team, and finding reliable resources. Zadnik shares her family’s personal journey with FTD and how her work as an ambassador helps ensure others feel less alone.

Friends Life Care is a nonprofit Quaker organization that provides in-home health care, related personal-care services, and wellness programs to enrolled members.

A Journey From Loss to Advocacy

Zadnik’s mother was a mental health professional who spent her life reducing stigma and serving her community. When subtle changes began appearing around 2017—missed phone calls, growing distance, uncharacteristic behaviors—Zadnik initially attributed them to her mother’s demanding work and caregiving responsibilities for her own father.

But as the changes intensified, particularly during the COVID pandemic, it became clear something more was happening. Her mother, who her family knew as deeply empathetic and private, was changing in fundamental ways. After being designated with power of attorney, Zadnik and her sister pushed for answers when initial diagnoses didn’t fit.

“We felt really knowledgeable about mental health,” Zadnik recalled, “and those diagnoses or misdiagnoses didn’t really sit right.” The frustration of not being heard fueled her determination to find the truth.

Through persistent research, Zadnik discovered AFTD and finally found clarity. “It was like hearing our story back to us and feeling so less alone,” she said. The diagnostic checklists, publications, and recorded webinars became what she called “truly a lifeline” for her family.

With AFTD’s resources, Zadnik connected her mother with specialists at the Penn Frontotemporal Degeneration Center, who provided a diagnosis of probable FTD. Finally armed with accurate information, she could better educate her mother’s care team and help her family understand what lay ahead.

Building Support and Breaking Stigma

During the podcast, Kane emphasized that FTD is a diagnosis no one should face alone. She outlined practical steps for newly diagnosed individuals and families: learning about the disease, starting legal and financial planning early, joining support groups, and connecting with community resources.

Kane also addressed one of the most significant challenges families face: stigma. “When you have a disease that affects behavior and personality, it creates a lot of uncomfortableness within the community,” she explained. AFTD provides awareness cards, letters and guidance for talking with local police to help reduce isolation and manage potential legal risk.

Zadnik echoed this message, sharing how the AFTD community has helped her become “more compassionate and patient and comfortable with the uncomfortable.”

When Zadnik’s mother passed in August 2023, she felt called to action. “That’s what motivated me to become a vocal advocate,” she explained, “so that I could help other families find that clarity and that connection that I was looking for.”

As an ambassador, Zadnik serves as a local connector—supporting volunteers, educating communities, and advocating for more supportive policies in assisted living and memory care facilities. The work has become what she calls “a living legacy” for her mother. “I know if she were still here, she would want to be raising awareness and helping people feel less alone,” she told Proska.

Zadnik encourages anyone touched by FTD to reach out, even in the darkest moments. “It can feel like a lonely place and that’s okay,” she acknowledged. “But know that it is temporary and that there is a community waiting to embrace you, to support you, to listen.”

Further reading:

• Watch the entire podcast episode on YouTube
• Learn more about Friends Life Care
• Browse the AFTD diagnostic checklists, current publications, and our growing webinar archive
• Learn more about the Penn Frontotemporal Degeneration Center
• Review AFTD’s awareness cards, sample letters for healthcare professionals, and guidance for talking with local police about behavioral issues caused by neurodegeneration
• Learn what AFTD ambassadors do, and who they are