TUCSON, Ariz. (KGUN) — KGUN is taking a holistic look at Alzheimer's Disease, research and treatment, care and support, and the impact it can have on families. Claire Graham talked with experts about approaching a loved one's diagnosis, when kids and grandkids are involved.
For a child, learning that grandma might not remember you anymore, can be crushing. But it's not the end.
"Alzheimer's and dementia are devastating diseases. And they affect the entire family so deeply, in so many ways," Dr. Corrine Self explained. She's a geriatrician, who founded ElderHealth, a company in Tucson focusing on all aspects of Alzheimer's care, including helping families cope.
Their clinical social worker, Laura Aylmer, says when it comes to talking to your kids about the changes a diagnosis will bring, it's never too early.
"Children are very intuitive, and that they pick up on changes and feelings and information that's happening within the family system," Aylmer said. "We recommend that as soon as possible, or as early as someone might have the diagnosis, and changes are being noticed, that it would be a good time to open up this discussion."
She says helping a child fully understand what's going on, starts with you.
"One of the things that we recommend is for the parent themselves, or whoever's identified in this role, to educate themselves about the progression of the illness, and to really understand what might be going on so that when children come with their questions, they can have some answers," Aylmer said.
From there, she says open an age appropriate discussion in a safe place.
"I would be honest and direct," Aylmer explained. "I'd say, 'Grandma has an illness and the name is Alzheimer's disease. And similar to what you might remember when you broke your leg, and something wasn't working quite right, this illness for your grandmother involves a brain that is broken and not working.'"
She and Dr. Self say one of the best ways you can start the conversation, is with picture books. They say reading to the child and teaching them through storytelling, can be an easy way to help them understand what's going on with their loved one.
"That lends itself to a really safe and open space to ask questions," Self said. "From there, letting the child lead and being clear with the child -- this isn't your fault, this isn't anyone's fault. And listening, really listening and not putting your own baggage or emotions onto the child."
With changes coming, they say children may grieve the relationship they once had with their grandparent, so it's important to explain that it's not over, it's just going to be a little different.
"There is so much that can be done to continue to have connection and joy," Self explained. "If they liked to play like sports together, we suggest like the simple tabletop board games where you're throw little ping pong balls into rings. If they liked music we suggest listening to music together, or getting a little kid karaoke machine so they can sing together. Art Projects, coloring, painting. We suggest creating what's called a Dharma box, a box of mementos, photographs, where you can pull it out and the child can lead the conversation by just showing them a picture."
While Alzheimer's is a thief, they say it open the door for some special moments.
"One of the beautiful opportunities that can arise out of something that's so difficult," Aylmer said, "is that the progression of Alzheimer's disease involves this diminishing of the short term memory, and much more of a return to someone remembering things of the past and longer term. It also has a person being very mindful and in the moment, because if their short term is fading, they're going to just remember what's happening. Children mimic this, they are very mindful of moments of joy."
Their group, ElderHealth does have a special guide to help you talk to your kids about Alzheimer's, that uses the acronym U R READY:
U: Understand the progression of the illness to better answer your child's questions in age appropriate ways
R: Reassure children they are not the cause of personality and behavioral changes
R: Reminisce as a path to connection
E: Enlist the help of your child in age appropriate ways
A: Acknowledge your child's feelings
D: Dance, sing, craft, cuddle
Y: Y's are always part of the Alzheimer's journey
Claire Graham is an anchor and reporter for KGUN 9. She grew up in Tucson and graduated from the University of Arizona with a degree in musical theatre. Claire spent a decade in Washington state, where she worked in journalism, met her husband and welcomed their baby boy, before moving back home. Share your story ideas and important issues with Claire by emailing claire.graham@kgun9.com or by connecting on Facebook and Twitter.