Alzheimer’s disease has impacted both sides of the family of Kate and Frank Spinella of Middletown, but they want to channel their difficulties into making a difference and creating awareness for everyone.
Kate, who is the Director of Development for the Alzheimer’s Association, Rhode Island Chapter since 2017, has been instrumental in helping to create awareness around the issues surrounding Alzheimer’s disease and all other dementia.
“My professional and personal lives are completely dedicated to the mission,” said Kate. “People need to be informed, they need to know where to go to get correct and timely information about the science behind the disease, the possible risk reduction and the resources that are out there to help this community. I always recommend going to the Alzheimer’s Association for education and support.”
Kate’s mother was diagnosed in 2004 with early onset Alzheimer’s disease at 64 years old. She lived at home for six years with her father as caregiver, while he attended a regular Alzheimer’s Association support group. She eventually moved to a memory care unit, where the care was what she needed. Barbara passed away from complications of the disease in 2016 at the age of 79.
Frank first noticed something was different during a family trip in New Jersey playing golf with his father on Father’s Day Weekend two years ago. “My father was a practicing attorney at that time. I had gone to play golf with him at his club where had been a member for 35 years. He went to get a hat out of his car, but he stood in the parking lot for 10 minutes,” Frank explains. “He wasn’t himself, and he was confused with his normally familiar surroundings. Within a couple of days, he had been hospitalized after having suffered a few strokes, thus causing the dementia that was diagnosed shortly thereafter.” Frank’s father closed his practice at the end of 2018, when the disease really started to set in.
The pandemic has brought new challenges to the Spinellas. Frank’s father now lives with them when circumstances changed with his dad’s care partner. There really was no good option of care in his father’s home state of New Jersey at the time, that’s when he re-located to Rhode Island at the beginning of COVID-19, where he will remain until he can return to a safe and caring environment back home.
Kate has led the effort to create new and fun opportunities to support the organization’s programs through expanding the Walk to End Alzheimer’s events from two: Providence and Newport, to two additional Walks in Westerly and Block Island. Doing the “pandemic pivot”, the Alzheimer’s Association team created virtual events in celebration of The Longest Day, a signature fundraising event for the Association, which included a cooking demonstration by celebrity chef Frank Terranova, a dance party with NBC 10’s Samantha Read and local DJ’s, Zumba with local instructor Anne Kimpton and hair dying lessons with Beauty and the Beach in Warwick.
In honor of The Longest Day, Frank will complete a bike ride that spans 100 miles in July. His effort will be to create awareness and raise funds for care, support and research for the Alzheimer’s Association. He is looking for people to do the same, and join his team. Their story shows that since they both have parents who have been diagnosed with dementia that it can impact anyone. “I am riding in honor of them,” said Frank. “We cherish every moment, but it is very hard being a caregiver. I honor anyone who can do this work. We are totally committed to the cause and hopefully one day there will be a cure.”
Kate said that people should educate themselves, reach out for assistance and connect with others who have gone through similar experiences.
“The Alzheimer’s Association has so many programs and resources in the community, including a 24/7 Helpline,” said Kate. “in the age of technology, you can even download the Associations’ Science Hub app to stay up to date on the science and research being done in real time. The more we plug away, we will find real treatment and possibly a cure.”
The issues with coronavirus has created challenges for caregivers and those living at home and also for loved ones in assisted living facilities and nursing homes, including the difficulties of being separated from each other, but Kate said there are ways to help.
“We can find solutions,” she said. “We can combat social isolation if we get creative as caregivers,” said Kate. “This population has been devastated by COVID-19 and Alzheimer’s disease.”
They are encouraging anyone, to become involved. They can also use creative ways to raise awareness and fundraise as well.
“Anyone can be successful in fundraising, and creating your own fundraiser makes it very easy to accomplish,” said Kate. “Now more than ever we need the public’s support.”
For more information on The Longest Day, go to www.alz.org/thelongest
day. For more on programs, seminars and other opportunities in Rhode Island, go to www.alz.org/ri
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.