ALZHEIMER’S DISCUSSION

U.S. Rep. Paul Tonko talks to kids about Alzheimer’s

The Saratogian (Saratoga, NY) - - FRONT PAGE - By Glenn Grif­fith ggrif­[email protected]­gian.com @cn­weekly on Twit­ter

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.”

GLENN GRIF­FITH - MEDIANEWS GROUP

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.

GLENN GRIF­FITH - MEDIANEWS GROUP

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.

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