Miss Largo, Olivia Stacey, reads “What’s Happening to Grandpa?” a story that helps her introduce how Alzheimer’s disease can affect children’s family membersduring a Legacy of Love workshop. Stacey’s nonprofit helps children cope with the disease through education, discussion and the creation of a scrapbook that memorializes their loved one’s life.
LARGO – Olivia Stacey used to be one of the youth she’s now trying to reach through her nonprofit, Olivia’s Legacy of Love.
When Stacey, now 23, was in fourth grade, her grandmother was diagnosed with Alzheimer’s disease.
“I really feared that she wouldn’t know who I was and she wouldn’t remember the relationship that we had,” she explained. “I wanted to create something that would honor her legacy but also create something that would help me cope with the changes that were happening.”
Stacey started going through her house, looking for photos, mementos and recipe cards that memorialized her grandmother. Stacey and her mother enjoyed scrapbooking as a family activity. It was a natural fit to create one for her grandmother.
The process helped her family and later, when her grandmother moved into an assisted living facility and continued to lose her memory, the book benefited her directly.
“When she got to the point where she couldn’t tell stories about herself, the book told those stories for her,” Stacey said. “I saw then how that book was able to spark a connection between medical practitioners and nurses.”
By then, Stacey was growing up and realized that she could help other families in the same way. She began to hone the concept of the program, as well as her own knowledge, with other professionals and those studying the disease.
Her idea was to host workshops for children where she would talk to them about the disease and emphasize to them that their grandparent, or sometimes a parent, still loved them, despite their actions. Then, she would lead them in the creation of their own scrapbook.
“Through talking to people in the Alzheimer’s community, I realized that there wasn’t a program like this. That was a little bit surprising to me,” Stacey said. “I realized the potential this had.”
Since 2011, Legacy of Love has been introduced at 45 different healthcare facilities, schools and community organizations. Stacey has personally spoken to more than 5,000 people, many of them children, about the impact of Alzheimer’s disease on families.
The program really took off in 2011 after Stacey competed in the Miss University of Florida pageant, a Miss America preliminary competition. At the suggestion of a friend who knew she needed scholarship money for graduate school, Stacey represented her sorority, Zeta Tau Alpha, and was named first runner up.
Aside from enjoying her first beauty pageant experience, Stacey realized that the Miss America organization could help promote Legacy of Love and highlight her efforts to help the Alzheimer’s community.
“When I made it my platform, it just really opened up so many opportunities for me to meet new families who were struggling and really create awareness for programming what I was building,” she said.
After graduating from the University of Florida, Stacey moved back to Pinellas County where she had grown up. She started a graduate program in strategic communications at the University of South Florida. She currently works as a marketing director for a financial planning company.
And in February, Stacey was crowned Miss Largo. She will compete in the Miss Florida Pageant in St. Petersburg in July.
She deferred her graduate studies for a semester, but just working a fulltime job and advancing Legacy of Love takes a lot of time. But her efforts with the nonprofit never feels like work, she said.
“It’s an outlet for me, just as much as it is for the families and the kids that I work with. It does just as much for me as it does for them,” she said.
Stacey has been building the program slowly, giving herself time to try out what activities and conversation starters work with children. For teenagers, she shows a video to introduce the idea. The scrapbook activity helps them discover their loved one’s history.
For the younger children, their scrapbook is more of a tribute to how they feel about their grandparent. Stacey asks them to bring in photos and mementos and encourages them to share favorite memories. Stacey also found a children’s book on the topic of Alzheimer’s disease.
In “What’s Happening to Grandpa?” by Maria Shriver, the main character helps preserve her grandfather’s legacy through a scrapbook. By happenstance, it’s a perfect introduction to her program.
“When I read it, it really touched me because it reminded me of myself and what I’m trying to do,” Stacey said.
The book helps the children identify with their own feelings.
“Some of them, I think, are very lost and confused,” she said. “It’s such an emotionally charged disease. There can be so many complex situations.”
Stacey helps the children understand that when their grandparent is yelling at them or acting strangely, it’s not his or her fault. After working with the children for a few sessions, Stacey said the children start to recognize the symptoms of the disease and tell her, “I know she’s not angry at me, she’s angry at Alzheimer’s.”
“When kids say things like that, that’s when you realize it’s making a difference,” Stacey said. “They can say, ‘I know now, and it helps me, and I don’t get as upset because I know it’s not what she’s meaning to do. She’s just confused.’”
More and more children and teens, especially in strained economic times, are helping their families care for their loved one who has Alzheimer’s disease, helping to prepare meals and spend time with their grandparent, Stacey said. Children need a support system too. Stacey’s mother, Tricia Stacey, is a third-grade teacher at Brooker Creek Elementary School and has been an invaluable asset in helping her daughter develop appropriate materials for all ages.
Stacey adopts the Legacy of Love program to fit different times and space availability. She tries to head a workshop personally about once a month, but is working to give Legacy of Love a presence across the state of Florida and eventually nationwide. To that end, she is recruiting volunteers with personal or professional experience with Alzheimer’s to head new workshops in different areas.
Legacy of Love also offers a ready-made packet of information and materials available for download to anyone who wants to head a workshop. Stacey envisions different Legacy of Love chapters across the country.
Stacey works to provide as much of the scrapbooking supplies herself or through donations and sponsorships. Ideally, she would like to secure a chain crafting store as a sponsor, create an official Legacy of Love scrapbook whose proceeds could go to the Alzheimer’s Foundation of America and give each child she speaks to a copy of “What’s Happening to Grandpa?”
“I have a lot of ideas,” she admitted. “I want to take it one step at a time to really make sure that each step is the most meaningful it can be.”
Seven years after official diagnosis, Stacey’s grandmother passed away from the disease. Olivia’s Legacy of Love, which has a pending 501(c)(3) nonprofit status, has been cathartic for her. She was very close to her grandmother, who attended her “every dance recital, every performance, every practice.”
“I’m able to still honor her in what I do,” Stacey said. “A lot people are scared of the disease and at first, can be in somewhat denial. So it’s helpful to have that experience of living through it.”