Alzheimer's disease is a progressive, degenerating disorder that attacks the brain's nerve cells, resulting in loss of memory, thinking skills and behavioral changes. Gradually, patients lose their independence in daily life, as they become unable to take care of themselves. That makes caring for someone with Alzheimer's a demanding and stressful full time job. As Faith Lapidus tells us, in this report by Faiza Elmasry, caregivers find help wherever they can.
There are approximately 5 million Americans with Alzheimer's, and they each need someone to care for them. Caring for the caregivers was the focus of the third annual survey by the Alzheimer's Foundation of America, a non-profit that focuses on providing support for Alzheimer's patients and their families.
The survey talked to individuals who are in the "sandwich generation," those caring for their children and at the same time caring for an individual with Alzheimer's disease.
"Three in five of these caregivers talked about how their children had a role in providing care," says Eric Hall, president of the Alzheimer's Foundation of America. "Thirty-six percent of these caregivers also, specifically, credited the support of their children to a contributing success factor of why they were great at being caregivers."
Depending on their age and ability to help, Hall says young adults and teens are increasingly getting involved in care giving. Many assist with doctor appointments, transporting loved ones with Alzheimer's, feeding and dressing them, and helping in other ways.
He says more than half of those surveyed said that their children had to pick up other responsibilities around the house, because they were busy caring for an individual with Alzheimer's.
Ann Suzuki is the primary caregiver for her husband who was diagnosed with Alzheimer's six years ago, when he was only 55. She gets help from her three adult sons.
"My kids are very oriented toward family responsibilities," she says. "Like their father, they have very sweet caring personalities."
Suzuki has just returned from a family vacation, with her husband and sons.
"They did everything for me, trying to give me as much of vacation as possible," she says, "everything from dressing my husband, feeding him, helping with his shower, ordering from the menu in restaurants, holding his hand as we walked around town and even toileting. They are really wonderful."
Her son, Andy Suzuki, now a junior at Brown University, was only 15 when his father was diagnosed.
"I'd say, me, my siblings and my Mom are just trying to enjoy the moments we have with him before the disease progresses more," he says.
Alzheimer's redefined his relationship with his father. "It's totally changed the relationship to a point where, though it's really sad to say, it's really an obligation," he says. "I take care of him. That's pretty much it, one sided, I'd say.
His mother says that's part of the psychological burden of caring for a loved one with Alzheimer's.
"He's really not my husband anymore. He is not the man I married," she says. "I think if you still keep trying to look for that quality in the relationship, look for a fulfillment in that way; it's more frustrating. It's better to redefine the relationship in a way that minimizes the emotional heartbreak."
Caregivers also need outside help and support to deal with the emotional pain, according to Dr. Lesley Blake, a clinical associate professor of psychiatry, at the University of Washington School of Medicine. They should be aware, she says, that caregiving can take a heavy toll on their health.
"Depression is very common in caregivers," she says. "There is also a lot of evidence out there that caregivers are more prone to do die at almost the same rate or quicker than the person with Alzheimer's.
Learning in advance what to expect as the disease progresses, Blake says, helps caregivers prepare to deal with their responsibility and make the right treatment decisions. She suggests the Alzheimer's Foundation of America Web site as a useful resource, where caregivers and their children can go to get the information and support they need.