Alzheimer’s Association reaches out to kids with loved ones who have the disease

By Nichole Holland, 15, and Chelsea Parrish, 13. Contributors include Mandie DeBretto, 11, and Faith Cole, 9

Eight thousand people in the Upper Peninsula are diagnosed each year with Alzheimer’s disease. Now consider that each of these people has an average of five grandchildren. That’s a lot of kids that are touched by the disease.

According to the Alzheimer’s Association, Alzheimer’s disease has a profound effect on children who have a loved one with the disease — especially if the loved one is being cared for in the child’s home.

“Commonly kids find themselves very confused, not really understanding, because they don’t have the education or the background about Alzheimer’s disease. They’re confused about what’s going on in their family,” said Jessica Vining, a volunteer with the Alzheimer’s Association U.P. Region chapter in Marquette.

Alzheimer’s attacks the brain and nervous system. It gradually destroys memory and the ability to learn, reason, communicate and carry out daily activities. It is the most common form of dementia. According to the Alzheimer’s Association, the number of people diagnosed with the disease grows every year. It is always fatal and claims over 100,000 lives annually.

The mission of the Alzheimer’s Association is to enhance the quality of living for everyone affected by Alzheimer’s Disease and other dementia related disorders by providing leadership, programs, services, advocacy and research support.

There are seven stages of the disease. In the first stage, typical symptoms are short term memory loss and personality changes. As the disease progresses, patients are no longer able to do normal everyday things such as driving and speaking. In the final stages, they lose all memory of their family and are unable to walk or feed themselves.

“Sometimes kids will feel embarrassed by what’s happening because some of the behaviors can be a little bit strange and different,” said Darlene Allen, office coordinator of the U.P. chapter.

They may also feel sad, angry, worried, afraid, guilty, or jealous. They may not want to be around their loved one as much. They may start to do badly in school, and spend less time at home.

Helping a child deal with these emotions requires patience. The child needs to know that they can come to a trusted adult and have their questions answered openly and honestly. They need to be educated so they understand what is happening.

To address these concerns, the U.P. chapter implemented a youth outreach program last February through April. Its purpose was to educate children on what Alzheimer’s disease is, how it affects them, and how to deal with the many emotions that arise.

Allen was the coordinator of the program. Vining was one of two volunteers from the Student Leader Fellowship Program at Northern Michigan University who presented the program to local youth. She and Kelsey Gagnon visited area schools and showed a presentation about the disease.

“We started off talking about why the message is important to them,” Vining said. “We explained how most of the time when you’re talking about Alzheimer’s disease you don’t really think to talk to teenagers and those who have grandparents and older relatives with the disease. Then we talked about how the brain functions, how the disease affects the brain, and what happens to someone that has Alzheimer’s disease. Then we watched a video about kids, both in elementary and middle school ages predominantly, how they deal with it and the ways to cope.”

Vining was surprised by how many kids were open to the message as well as how many kids actually knew someone with Alzheimer’s disease. She was also pleased that kids were receptive to the presentations.

“They asked a lot of questions. A number of them have had contact with people with Alzheimer’s disease. So they were very interested to hear what we had to say. Each student was willing to listen and to think about what that would be like. So just knowing that so many students had some experience with someone with Alzheimer’s disease and yet so few had information about it, I felt it was important that we had done this,” she said.

The volunteers made presentations across the U.P. but mainly in Marquette County to area schools and youth groups. In Negaunee they presented to sixty kids in three classes. In Marquette they presented to ninety kids in three classes.

The U.P. Chapter hopes to continue this program in the future. Since it relies on volunteers, the chapter would like to once again involve the NMU Student Leader Fellowship Organization or other service groups.

The U.P. Chapter reaches out to children in many additional ways. On its Web site, www.alzgmc.org there are specific pages focused on children and teens, along with a lending library with books, videos, and pamphlets. The chapter also involves children in special events such as benefit breakfasts and the annual Memory Walk. There is also someone available to talk to children or their parents in the office at 710 Chippewa Square in Marquette or by phone at 228-3910.