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Date: 6/28/2023
Kaileen Copella was in college when she learned her mother had dementia. Copella’s mother was just 57 and was diagnosed with an early-onset form of the disease that took her life seven years later.
“It was hard in the beginning because mom tried to hide her symptoms from our family. She was embarrassed and had a hard time coming to terms with her dementia,” said Copella, 32.
The Agawam resident and her family turned to the Alzheimer’s Association for help in dealing with her mother’s disease.
“They were a lifesaver. They helped us find care for mom and explained about other resources that were available,” said Copella.
Her experience with the Alzheimer’s Association led her to form a team of family members and friends who raised money and participated in the organization’s annual walk in 2017, one year before her mother’s death. They named the team “Sherry’s Story” in honor of Copella’s mother, who joined their inaugural walk. Since then, Copella’s 20-member team has raised $10,000 to benefit the Alzheimer’s Association.
“Dementia can be an isolating disease for the person who has it and for caregivers. The walk and the association are a community of people who understand — and who support — families experiencing the effects of dementia. It also gives us hope that someday there will be a cure for this devastating disease,” she said.
Copella is planning to raise more money for the Alzheimer’s Association’s annual walk in October. She was among 75 to 100 people attending the association’s second-largest fundraising event — “The Longest Day” — on June 21 in Southwick.
It celebrated the start of summer, was a jump-start on fundraising for the walk and helped to raise awareness about dementia and Alzheimer’s. More than 20 vendors donated money to the Alzheimer’s Association to sell items and food at the summer celebration.
Alzheimer’s is a specific degenerative brain disease leading to dementia — which is a group of symptoms that causes a mental disability to perform day-to-day activities. Alzheimer’s disease is more common in elderly people and the earliest symptoms are trouble in remembering, disorientation and confusion.
“The Longest Day” was hosted by the Genesis HealthCare-affiliated Heritage Hall Campus in Agawam on the grounds of the Christ Lutheran Church in Southwick. The health and rehabilitation facility offers post-hospital, dementia, dialysis and long-term care, and partners with the Alzheimer’s Association.
Abby Zuber of Agawam came to the event to support the Alzheimer’s Association and plans to participate in the fall walk. None of her family members have been diagnosed with Alzheimer’s, but her best friend recently died from a rare form of the disease.
“She was only 25 — way too young,” said Zuber. “It was a shock. I know older folks — people in their 70s and 80s — can have Alzheimer’s, but I never realized it could impact somebody much younger.”
Zuber said she now has a better idea of the importance of how the association helps families, so she’s eager to help raise awareness and money.
“Walking is an easy thing,” she said. “I’m always going for walks and if I can walk and do something to help others, I’m happy to do it.”
Shauna Dandy used to be part of the volunteer committee that plans the association’s annual walk. Now, she’s the person overseeing it. Dandy was hired by the organization to be the manager of the walk after the previous manager left. For the Agawam resident it’s more than just a job — it’s a mission.
“Raising money for research on this disease is personal. Both my mother and grandmother died from Alzheimer’s and my aunt was recently diagnosed,” said Dandy, who works remotely from her home.
Her grandmother was in her 60s when she was diagnosed and her mother was 55 when it was determined she had Alzheimer’s. While her grandmother survived until she was 79, Dandy’s mother was 64 when she died. Her aunt is now 48.
Dandy started volunteering to help plan the walk in 2021, shortly after her mother’s death. She wanted to do something to make a difference and felt the walk was the best way.
“It’s the association’s biggest fundraiser and its biggest community event — it’s basically one giant community support group,” said Dandy, who was at the event to provide information for people who wanted to join the walk.
She said all the money raised at the annual Pioneer Valley Walk to End Alzheimer’s, which is Oct. 15 in Holyoke, is used locally. It helps fund no-cost services the association provides, such as a 24/7 helpline for anyone dealing with Alzheimer’s.
“One of the most important services the association provides is helping people come up with a care plan. We have professionals who offer advice and support. Dementia is a very challenging disease — people aren’t always sure of what they need to do or how to get help,” she said.
Dandy said she knows from personal experience the emotional and financial toll the disease takes on both individuals and society.
“People with dementia are robbed of their ability to contribute to society and to enjoy life,” she said. “My mom couldn’t enjoy her retirement years travelling or spending time on other things she liked to do. All her money went to her dementia care.”
The Southwick event was part of a worldwide “Longest Day” celebration for people to gather to raise awareness about Alzheimer’s. Stephanie Schellenger, dementia program director for memory support at Heritage Hall, was lead event organizer in collaboration with key members of several other local Genesis-affiliated centers.
“Money is still coming in, but so far, we raised about $1,200. It was a great turnout and I’m very happy about it,” said Schellenger, who has been in her current position at Heritage Hall for five years. “It was a great way to show people dealing with Alzheimer’s and dementia that they are not alone in their fight.”