It all started with an aging grandmother's trip to the bowling alley.
The 2007 novel Still Alice is based in part on author Dr. Lisa Genova’s grandmother who, at 85, was beginning to show warning signs of Alzheimer's — warning signs her family had difficulty acknowledging.
“We all knew she was slowing down, forgetting words, leaving the keys in the door, the tea kettle on the stove, not able to do the checkbook anymore,” Genova told the almost 1,000 people who came to hear her speak at Episcopal Retirement Services' 16th annual Refresh Your Soul conference.
“So we all went ahead with this dance, that this was a part of normal aging. But it wasn’t,” Genova said. “This walk to the bowling alley in the middle of the night, this confusion, this disorientation, this inability to understand, was Alzheimer’s,” she said.
"Alzheimer's and Dementia: Caring and Communication That Works” was the theme of this year’s Refresh Your Soul conference.
Among this year’s presenters was Genova, whose 2007 novel Still Alice — about a college professor whose world is suddenly turned upside down following her early-onset Alzheimer's diagnosis — spent 59 weeks on the New York Times Best Sellers list.
The book was subsequently made into a critically-acclaimed 2014 independent film starring Julianne Moore, Alec Baldwin and Kristen Stewart. The movie garnered Moore the 2015 Oscar for Best Actress.
Before embarking on her literary career, Genova obtained her Ph.D. in neuroscience from Harvard University in 1998 and served as a researcher at Yale Medical School and the National Institutes of Health.
In her lecture, Genova drew parallels between today's efforts to increase awareness about Alzheimer’s and past efforts to change perceptions about other conditions, such as HIV/AIDS and cancer, that have historically borne undeserved social stigma.
“When the HIV virus first hit in the ‘80s, it primarily hit the gay population, and that community wasn’t really talking about it because of the shame," she said. "It’s the same story with Alzheimer’s.”
In the case of HIV/AIDS, Genova said, society's ignorance about the disease was only undermined once "something changed, and it began with conversation.”
“Do you remember when nobody would even say the word ‘cancer?' We talked in whispers. We called it ‘The Big C.’ We wouldn’t even say it,” she told the audience.
“What happened was people would have to go through it alone. There was, again, this shame and stigma that we wouldn’t speak of this. There were no blue ribbons back then for cancer, no fundraisers, no neighbors helping with casseroles and carpools. People suffered with it alone, and privately. We did not have treatments, and we did not have survivors.”
Just like cancer and HIV/AIDS, continued public dialogue will be integral to developing a widespread understanding of — and empathy for — Alzheimer's sufferers, their families and their caregivers, Genova said.
Caring for the spirit as well as the cognitive disorder
A highly-regarded American expert on dementia, Teepa Snow, followed Genova’s presentation with "Meeting the Needs of the Whole Person: Spiritual Wellbeing is a Critical Part of Care.”
Drawing on experiences of her 30-plus-year career as a registered occupational therapist, Snow developed a training system, called Positive Approach™, for professional memory care providers, family members and informal caregivers of cognitive disorder patients alike.
Both presentations were well-received by conference attendees, said Jeanne Palcic, director of the Parish Health Ministry.
“The conference was incredible and attracted our biggest crowd yet," Palcic said. "[Genova and Snow] were able to touch the hearts of attendees, giving them hope through understanding and offering practical, effective caregiving advice.”
Palcic said that conference attendees benefitted from an entire day spent with ERS and Parish Health Ministry personnel, professional colleagues, fellow caregivers and family members dealing with the same issues. Many were simply seeking as much information as they could find about Alzheimer’s disease and dementia.
Refresh Your Soul 2017 is now in the works
If you missed the conference this year, don't fret: Refresh Your Soul is a yearly event and will return early in 2017. Keep an eye on the conference's web page, located here, for forthcoming details about next year's date, theme and ticket information.