Spotlight on… Amy Shives, AFTD’s Persons with FTD Advisory Council

Amy Shives ED Con 2019

Amy Shives had one mission for this year’s upcoming AFTD Education Conference: To ensure that the voices, lives, and perspectives of persons diagnosed with FTD were prominently featured.

That mission came to fruition: Shives and the other members of the Persons with FTD Advisory Council will have a panel discussion detailing their firsthand FTD experiences.

The Advisory Council is “passionate about the people with the disease having a voice. We are passionate about the fact that we are still very bright and very able,” Shives said. “Too often in the past, and now, we’re treated like someone drooling in the corner that should just sit there all day. I challenge that.”

Life Before FTD

For nearly a decade, Shives has used her voice to challenge the stigmas surrounding dementia generally and FTD specifically. “I’ve always been colorful — what you see is what I’ve always been. I’ve always been the personality that would tell you what I think to a fault.”

Prior to experiencing the symptoms of behavioral variant FTD (bvFTD), Shives was already (unknowingly) familiar with the condition. Shives said her mother may have been living with an undiagnosed case of bvFTD.

“I was raised in a chaotic environment. It was like living with a mother with an extensive mood disorder; you did not know what was going to happen next. That’s where I started. I believe that I acquired this — I was born with it,” Shives commented.

Shives’s professional life was similarly characterized by managing difficult circumstances and navigating through stressful situations. Shives, 63, was a tenured counselor at a community college for more than 25 years, specializing in mental health and academic crises. Prior to that, she was a domestic violence social worker who also worked with children in foster care. She also had stint working on attorney depositions that involved children in abusive situations.

As a college counselor, Shives provided guidance for more than 600 students and faculty members. “It required me to be pretty even-keeled because I’d be called to do whatever, whenever,” she added.

“When you’re good, which I was, and you get to the FTD point, you cannot control your own emotions. I could see myself being maladjusted to my role. That’s where it began and it filtered into me not remembering,” said Shives.

In time, Shives would need help from her students with logging onto her computer. Soon, her colleagues noticed her changes in behavior and grew concerned. Shives thought that time away from work would help, but after a six-month sabbatical, she knew she could not resume her counselor role.

“I came back to work and I couldn’t do the computer work I needed to do. All of my student files were on the computer and I couldn’t manage them,” Shives recalled.

An FTD Advocate Is Born

Now, 11 years since her unexpected retirement, Shives commits her life to FTD advocacy work. Throughout the years, she has served as an advisor and contributor for dementia-focused organizations, educating individuals about the lived experience of being diagnosed with FTD. She is a founding member of Dementia Alliance International, a global organization by and for people living with dementia. Shives has also travelled around the country sharing her story and raising awareness of FTD.

Additionally, Shives was a member of AFTD’s Think Tank for persons diagnosed, the precursor to the formally chartered Persons with FTD Advisory Council. For the last three years, Shives has been an active participant on AFTD’s Education Conference planning committee, and in 2019, she delivered the welcome address that kicked off AFTD’s conference in Los Angeles.

“My joy is what I do advocating; I have been doing it for years. It’s quite extraordinary the opportunities that I’ve had. They have been really cool and have gotten me through it. I’ve enjoyed being on TV, the interviews, being on a billboard, and being chosen for the Alzheimer’s Association’s national committee. That’s just really energizing,” Shives said with a smile.

Shives will take part in two sessions during the 2021 Education Conference, including moderating the “Our Voice: A Discussion with People with FTD” session.

“I’ve told my story so many times, it’s time for someone else to speak,” Shives mentioned in reference to the upcoming session, happening May 13. “We needed our own session. We have our own grief because we’re [the ones] dying of a brain disease. Caregivers experience different grief, yes, but it’s not the same.”

Shives said she worked diligently with the other members of the Advisory Council to produce the session.

“I got us together to rehearse many times. It was a labor of love and it’s excellent. It’s heartwarming, it’s educational, it’s a tearjerker. We did a fantastic job.”

For more information on AFTD’s 2021 Education Conference, visit the conference homepage here.

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