Dementia Charity Is a Labor of Love
A 30-year passion lives on through a nonprofit group founded to help people affected by all forms of dementia
While celebrating his 24th birthday at a club in 1982, Kevin Jameson met the love of his life on the dance floor: Ginny, a 40-year-old single mother with an outgoing personality and a dazzling smile.
"She was a paramedic and ski patroller who loved doing things," recalls Jameson, who lives in Doylestown, Pennsylvania. "We got married, travelled the world and always had a great time together."
Jameson watched helplessly as his wife's formerly vivacious personality slipped away.
The couple's life changed in an instant in 2001 when an automobile plowed into the side of Ginny's car as she was driving through an intersection. She sustained a traumatic brain injury that slowly robbed her of her ability to walk, talk or feed herself.
Jameson watched helplessly as his wife's formerly vivacious personality slipped away. She lost her memory and was later diagnosed with dementia. In 2009, she moved into a nursing facility.
Channeling His Grief to Help Others
In 2013, Jameson left his corporate marketing and sales job to spend more time with Ginny. For years, he had been frustrated that he couldn't find adequate information about her disease. He realized there were no broad-based, national organizations devoted to all kinds of dementia — the way the American Cancer Society speaks to all cancers.
To bridge that gap, Jameson founded the volunteer-run Dementia Society of America (DSA) in 2013 as a central charitable organization representing all causes and forms of dementia.
"I wanted to make a difference, and felt it was imperative that people learn what dementia is and isn't through an organization devoted to dementia, the actual syndrome," he says. "People want tools. They want information. They want hope."
Jameson says DSA is now the nation's leading volunteer-driven dementia awareness organization. The charity has raised more than $6 million since its inception, enabling it to offer easy-to-grasp resources for people affected by dementia. These include online directories to help families find nearby support and a KeepSafe ID kit so first responders or others can get in touch with caregivers if a person with dementia wanders from home, gets separated at a mall or is otherwise found alone.
Lending an Ear and Giving Advice
"I give myself one-hundred percent to the organization without a paycheck and do whatever needs to be done," says Jameson, who often answers DSA's 24-hour information hotline (1-800-DEMENTIA) — a lifeline for people struggling to cope.
"Sometimes they'll say, 'You're one of the first people I can speak to about what's going on in my life' or, 'You've lifted a weight off my shoulders,'" he says. "It brings tears to my eyes because I know what they're going through."
Jameson says he named DSA's grant program Ginny Gives in his wife's honor because of her generous nature. The charity funds non-medical activities across North America focused on music, art, dance/movement and sensory stimulation given by organizations that help people with dementia.
"These activities drive people to relaxation that lowers anxiety, or heightened enjoyment and response so people can communicate — they may not be able to speak, but they can still express themselves creatively," explains Jameson.
Ginny loved to dance, he adds, but as her dementia progressed, she was unable to move. Eventually, she used a wheelchair and toward the end of her life, remained in bed.
"I played music that we loved together, and Ginny would close her eyes and a serene look would come over her face," recalls Jameson. "She couldn't express anything to me other than a brief yes or no, but when I put on music that transported her to another place, it was magical."
DSA has several award programs — Dementia CARER, Dementia QUEST, and Dementia SMART — to recognize people serving the dementia community through meaningful care, innovation and research. DSA also provides concrete strategies to navigate the new normal after dementia while providing hope, including a one-hour video, "The Dementia Action Plan: 7 Steps to Take in the Face of Dementia."
"There's a lot of life to be lived after a dementia diagnosis, so you have to get your affairs in order and plan for the next few years," explains Jameson.
The Journey Toward Hope
In 2012, Vanessa Adams began caring for her mother, Rebecca, who was experiencing memory lapses.
"I was living in Scottsdale, Arizona, and my mother was in Camden, South Carolina, so I was trying to manage her care long-distance," recalls Adams. "The neurologist said she had some cognitive impairment, but the scans didn't show any Alzheimer's disease."
Adams struggled for months to try to understand what was wrong with her mother.
"I kept Googling, and finally discovered the Dementia Society of America," she recalls. "The fact that it covered various types of dementia was key, and the biggest lifeline was finding somewhere I could go for information and validation."
"Just learning that cognitive impairment was an actual diagnosis changed everything," Adams adds. "Had I known about DSA when my mother was first diagnosed and read their information or watched their videos, that would've been a tremendous help."
Adams moved her mother to Arizona in 2016 and says caring for her full-time was both the worst and best experience of her life.
"When you're in it, you don't realize how difficult it is," Adams says. "On any given day, what I went through was torturous. But at the same time, I can't think of anything more rewarding than being able to care for my mother; it was a way of repaying her for everything she did for me."
While caring for Rebecca, Adams became involved with DSA activities and fundraisers. In 2018, she joined the organization's advisory council as a caregiver advocate.
Spreading the News, Moving the Needle
"Being an advisor makes me feel like I'm doing something positive to move the needle forward," Adams says. "There's so much more that needs to be done — everyone either knows someone with dementia or knows someone caring for someone with dementia."
Rebecca passed away in 2019. Today, Adams lives in South Carolina and continues to direct people to DSA for support.
"I can't think of anything more rewarding than being able to care for my mother; it was a way of repaying her for everything she did for me."
"I meet people all the time who don't know where to turn or what to do, and I hand out DSA's Aware and Share cards. You can keep them in your wallet if you or someone you're with has dementia, so if you go to a restaurant or get on a bus, you can show that card to someone so they will have more patience with you," she says.
At a recent community yard sale, Adams placed a stack of cards on her table.
"I got such a positive response. These cards start a conversation, and so many people had a story to tell — it's like I was having a therapy session in the middle of this huge yard sale," she recalls.
A Final Goodbye, a Hopeful Future
About a year after Jameson created DSA, Ginny's organs began failing. She died in July 2014 while Jameson held her hand.
He believes Ginny would be proud of what DSA has accomplished and how many families have been helped in her honor.
"We've achieved exactly what I had envisioned, yet I'm totally blown away by the good things that have happened," says Jameson.