U.S. Rep. Paul Tonko talks to kids about Alzheimer’s
CLIFTON PARK, N.Y. >> Teaching children about Alzheimer’s disease and why some of their older relatives may no longer act as they once did is a difficult task.
Last week, as the start of the holiday season drew near, the Alzheimer’s Association of Northeastern New York wanted to make a presentation to as many children as possible. The question was how to go about it.
For its Nov. 25 presentation, “Talking to Kids About Alzheimer’s”, the organization decided to make the evening informal, comfortable, and enjoyable for the kids. To accomplish that goal the group scheduled the discussion for the programming room at the Clifton Park-Halfmoon Library and reached out to author and retired Orenda Elementary School Principal Ann Frantti.
Frantti is not only the author of Grandma’s Cobwebs, a children’s book about Alzheimer’s, she is also the Alzheimer’s Ambassador to Rep. Paul Tonko, D-Amsterdam.
The evening was directed at helping children learn about the disease and as such it was free of the usual statistics, charts, and graphs. There were free raffle drawings for books on Alzheimer’s, a table filled with cookies, and there was a special reading of Frantti’s book from Tonko.
The Congressman is no stranger to the discussion of Alzheimer’s. He is a major advocate for additional funding for research and has held many small meetings with people diagnosed with the disease and with family members and caregivers of those who’ve been diagnosed.
“Alzheimer’s Ambassadors contact the office of their Representative and ask them to please support funding for research for a cure, for support for caregivers, and for people who have Alzheimer’s,” Frantti said to start the evening.
Unlike other Ambassadors Frantti said she has no trouble getting support from Tonko. In many cases, by the time she reaches him he has either voted for the bill, is sponsoring it, or has written it.
“In December it’ll be 25 years since I lost my mother to Alzheimer’s,” she said. “I didn’t write this book to an
swer questions. I wrote it to be a springboard for discussions and that’s what we’re going to do tonight.”
To let everyone know the night was for the children Frantti asked all the children in the room to come to the front and take a seat on the carpet where two stuffed chairs had been placed. Tonko sat in one with Frantti’s book in hand and Beth Smith-Boivin, the Executive Director of the
Alzheimer’s Association of Northeastern New York, sat in the other.
Slowly, and with slides of the book’s illustrations enlarged on a screen behind him, Tonko began reading the story of one young girl’s realization that this year, unlike years’ past, something was different about grandma.
“I like staying with grandma,” Tonko read, “she lets me stay up late and watch television and takes to me to nice restaurants. I can eat cookies for breakfast if I want. I think grandma is cool even if she is really old. I know mom is wrong about her having Alzheimer’s. She looks just the same.”
Through the story the kids learned about Alzheimer’s; that it doesn’t hurt, it can’t be passed on like the flu, and that forgetfulness, anger, and living in the past can all be part of the disease. The story also informed the kids that three words – relax, remember and respect – would help them deal with the changes they were seeing take place in front of them.
Tonko’s voice was clear and soothing. Each sentence he read received an inflection appropriate to its contents. Occasionally he turned and pointed to the illustrations behind him on the screen to drive a point home. For the 20 minutes it took him to read the book Tonko left his elected office behind and let the story wash over him and the kids in the room.
Once he finished the book Smith-Boivin moved the discussion forward by explaining how Alzheimer’s attacks part of the brain, how it’s diagnosed, and the impact it can have on families.
“How do you feel when someone in your family has Alzheimer’s,” she asked the 30 children seated in front of her.
Sad, angry, upset and disappointed were a few of their answers.
“You’re disappointed and sad because we are wishing our loved ones to be the same way they used to be, act the way they used to act,” she said. “Sometimes you may have to adjust or change the rules. Talk about the past with them or create a memory box that lets you remember the good times the two of you shared.”
Before concluding the evening Smith-Boivin and Tonko noted a few statistics for the adults in the room.
Six million people suffer from Alzheimer’s. There are 16 million caregivers and in 2019 the Alzheimer’s Association invested $167 million in 450 research projects in 23 countries.
“Research will get us to the hope we need to discover a cure,” Tonko said. “Making sure there’s a partnership to work on the cobwebs is what it’s all about.”
Rep. Paul Tonko reads a children’s book on Alzheimer’s at an event last week sponsored by the Alzheimer’s Association of Northeastern NY. Seated on the right is the association’s executive director Beth Smith-Boivin.
Beth Smith-Boivin, the executive director of the Alzheimer’s Association of Northeastern NY, makes a point during the association’s presentation, Talking With Kids About Alzheimer’s. Seated next to her is Rep. Paul Tonko.