When Alzheimer’s disease enters a person’s life, it turns their world upside down, but it also has an impact on their surrounding family — including children.
“Children want to feel like they are helping in any way they possibly can,” said Jennifer Reeder, Alzheimer’s Foundation of America’s director of educational and social services.
Reeder said it is important to educate children on what is happening to their loved ones in a respectful manner, but it is also important to include the person with the disease in the conversation.
“Ultimately, the decision needs to be made by the person with Alzheimer’s,” she said. “They need to be involved. They should be the ones that get to decide on how to explain their condition to the rest of the family. They need to be asked if they would like to be a part of the conversation and who they would like to assist them.”
In the early stages of the disease, people can start to lose their memory and forget to follow through on tasks, which can create some frustrations for people around them, Reeder said. As they progress into the middle stage, people can start to see behavior and personality changes, which can grow more and more difficult for family members.
“It can become a very difficult thing to explain to these children,” she said. “The first thing they want to do is help, but they need to be educated properly.”
She said children comprehend scenarios best in the form of an illustrated story with relatable characters they can identify with, which lead to the recent release of Dancing with Granddad, an Alzheimer’s Story for Children and Their Families, a children’s book regarding this particular conversation.
According to the publication’s website, the main character, Nia, 7, has a grandfather who has the disease and will need to move to a new home to feel more comfortable. The book introduces the grandfather’s behavior changes, such as retelling stories, wandering and confusion, “while sharing the constant of the relationship between Nia and Granddad and her loving parents who are caring for him.”
Reeder said children need to learn the reality of the disease, but they also need to know that how they act is not a demonstration of how they feel inside.
“They need to learn that just because Grandma or Grandpa have this disease that will change his or her behavior and memory, it doesn’t take away the love,” she said. “Love will never change. They need to know that whenever they get frustrated about something or if they’re having a bad day, that’s not their fault. It’s the disease.”
Reeder said once the conversations regarding the behavior changes and memory loss in the early stages occur more frequently, it will call for early detection and an early diagnosis that will greatly benefit the individual.
“Being able to talk about it and educating people will decrease the amount of help,” she said. “This person is sick, and for so long, we start to brainstorm ways we can help them and what we can do for them instead of what we can do to include them in these conversations. It will help people separate the disease from the individual.”
Doing this also leads to having more unpaid caregivers, which makes up most of the support for these patients, said Reeder.
“The number of unpaid caregivers is astronomical,” she said. “It is the bulk.”
According to the Centers for Disease Control, there is approximately 16 million unpaid caregivers in the U.S. today, and the AFA estimated about 5.8 million Americans who live with the disease.
“I’ve worked with the aging population for many years,” said Sue Greenwell, the Lincoln Trail Area Development District’s aging services associate director.
She said it’s very important to reach out to support groups and other valuable resources the LTADD provides. The organization coordinates a nutrition program which initiates home-delivered meals to anyone over the age of 60, including anyone with any disabilities. Other programs involve personal care and shopping to patients with disabilities.
“These dependent people are not able to care for themselves and eventually can’t recognize family members,” Greenwell said. “It’s a very sad disease, and it impacts all families.”