Editor’s Note: This is the final of a five-part series looking at the effects of Alzheimer’s in Arizona. Read the other parts here.
PHOENIX -– Arizonans who are young and healthy might not see dementia or Alzheimer’s as their issue.
“I’m 20 years old,” Cody Kacerek said. The tennis coach in north Phoenix added Alzheimer’s meant old people to him.
It’s a fairly consistent answer among young adults. But economist Dennis Hoffman with Arizona State University’s W.P. Carey School of Business has a follow-up question:
“Well, how are your grandparents, parents, friends, relatives, co-workers going to be impacted by this devastating disease?”
As a state, the Arizona Alzheimer’s Task Force found caregivers lost $4.58 billion last year.
That’s just in wages forfeited by caregivers helping family members, friends or co-workers suffering with the disease.
Sixty-five percent of those people voluntarily helping others are women.
Now, imagine it’s an 85-year-old woman taking care of her 90-year-old husband.
She asks for anonymity, before revealing that in public her husband is, “a very social, loving person, stopping to talk with people.”
But when they get home, he “is really angry with himself and he’s angry with me because he is losing his memory and we can’t do anything about it.”
Amy Chengalaram, a professional caregiver and educator, said, “I think for our patients… it’s easy… to take out … on their caregiver … because they know that person is going to be there for them.”
She is working on the front lines of caregiving, helping families understand what they’re facing.
“For a lot of families I think it’s learning how to cope … not to fix … but learn how to live with it.”
The good news is Arizona leaders are working locally and nationally to empower families through education and programs.
For instance, U.S. Rep. Kyrsten Sinema is co-sponsor of the Hope Act for Alzheimer’s, which has strong bipartisan support. It would create a care-management planning session for all patients covered by Medicare.
“The planning session provides patients and their families with needed information about the disease, treatment options and available medical and community service,” Sinema said.
And, on the medical side of the fight, genomics professor Matt Huentelman at T-Gen in Phoenix is hopeful, “Because I think that, finally, we’re getting the chance to test the drugs that have failed in patients … but, might be really successful if they’re used earlier in the course of the disease.”
In the meantime, Dr. Maribeth Gallagher with Hospice of the Valley is empowering caregivers to cope.
As director of the dementia program, she leads caregivers through mindfulness classes.
She opens with a meditative chime to help caregivers find their center.
“There’s a tremendous amount of worrying that goes on and obviously that has an effect on their mind and their body. And so by coming back into this present moment, they can be grounded and present for what’s going on in front of them,” she said.
One caregiver who lost her husband to Alzheimer’s said, “We all need to reach out every day as much as possibly can to better their lives and enhance ours.”
If you suspect you or a loved-one may have Alzheimer’s or a related dementia, contact any of the following agencies for help in Arizona: