Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=155692
Story Retrieval Date: 7/29/2014 9:47:35 AM CST

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Alzheimer's caregivers are often silent victims

by Elizabeth Brandon
Feb 04, 2010


Alzheimer’s disease attacks both those diagnosed and those caring for people who develop the deadly disease. The task of caregiving can become a full-time job for unpaid family members who risk losing themselves in the process.

It is estimated that every 70 seconds, someone develops Alzheimer’s disease, according to the “Alzheimer’s Association 2009 Facts & Figures,” which also reports approximately 5.3 million people living with the disease in the United States today.

In two years, when the Baby Boomer generation starts turning 65, the number of those diagnosed will increase, along with the need for caregivers. The stress that may accompany the responsibility necessitates support for these silent victims, according to Darby Morhradt, research associate professor and director of education at Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center.

“Almost every single caregiver who steps into our clinic has experienced the stress of caring for someone who has this chronic neurodegenerative disease,” said Morhardt, “that is really changing personality, behavior, memory, and becoming increasingly dependent upon them for their daily needs.”

Nearly 10 million people in Illinois are unpaid caregivers. One of them is Peggy Dunbar, who cares for her 80-year-old mother who has been diagnosed with moderate-stage Alzheimer’s disease over the past year.

“I think the stress that I’m experiencing, is the stress of at times, I forget and I try to rationalize with her, you know the ‘Why are you doing that?’” said Dunbar.

While speaking with Dunbar on the phone, a Medill News Service reporter heard a flush in the background and running water. Dunbar noted that her mother had walked out of the bathroom without turning off the water.

“That’s a first, you see,” she explained. “Because I’m discovering things just about every day.”

The challenges of caring for the person diagnosed with Alzheimer’s may appear in a two-fold manner.

Elena Godfrey, a care navigator at the Rockford office of the Alzheimer’s Association, who works with families on care plans, said, “In the midst of all the care responsibilities that you have, you’re also internally grieving a loss of a relationship and those changes that you are seeing.”

Dunbar said, “You often times have to step back and say, ‘She’s not getting it. She’s not going to get it.’ So you have to figure out another way to get things done.”

According to Godfrey, the initial impulse to drop everything to care for a family member with Alzheimer’s mirrors that of someone responding to a loved one with an acute or temporary, emergency medical condition. However, once the acute condition subsides, the caregiver may recover.

“What we see with a chronic condition, in this case Alzheimer’s disease, is that that type of response is not functional and can cause a lot of problems for the caregiver long term,” Godfrey said.

She explained that caregivers need support and education to learn how to pace themselves when caring for people with Alzheimer’s disease.

Morhardt mentioned some examples of ways Alzheimer’s caregivers can receive support: assistance from other family members, hiring someone to help care for a loved one, counseling or attending support groups.

She said, “It is vital that we as healthcare professionals understand how at risk caregivers are for emotional distress, potentially physical illness as well, and that we ask them how they are doing.”

Since her mother’s diagnosis, Dunbar has attended a support group meeting at University of Chicago’s Medical Center.

“You have others like-minded, or people going through the same thing. We just share. You know, ‘Last month was a good month because.’ or ‘Last month wasn’t a good month because,’” Dunbar said. “We just share stories, real stories, and you always walk out and say, ‘Well I’m not alone.’”