Alzheimer’s: A Family, or a Federal, Issue?

April 27th, 2009 by Kathy McManus

10 million Americans care for a relative with Alzheimer’s. Should they receive federal assistance?

Brought to you by Liberty Mutual's
The Responsibility Project

First, there are the Alzheimer’s symptoms--forgetfulness, confusion, inability to recognize loved ones, debilitation, and a fog that never lifts.

Then there are the caregivers’ symptoms--fatigue, insomnia, back pain, headaches, and a nagging question that never fades: if you’re responsible for a family member with Alzheimer’s, how much of your own life are you responsible for sacrificing in the process?

Last year, an estimated 10 million Americans—mostly family members--provided a staggering 8.5 billion hours of unpaid care to loved ones with Alzheimer’s Disease, the sixth leading cause of death in the U.S. As patients get older, the burden grows for caregivers. A recent survey showed that many Alzheimer’s caregivers want more support from within their families and beyond. But they’re reluctant to ask for it.

“They tend to say, ‘This is my parent or relative, and this is my responsibility,’” said one gerontologist. “Caregivers tend to believe they are bothering others.”

One of the most frightening Alzheimer’s issues is wandering. 60% of Alzheimer’s patients wander away from their homes one or more times during their illnesses. But fewer than four out of 100 are able to return home without help.

“We live in a bolt-locked house,” said a woman who takes care of her stricken mother. “We have boards across the stairs. We have hung bells on the doorknobs.”

Bracelets and clothing tags using radio signals or GPS technology can be worn by Alzheimer patients, making it easier in some circumstances for police and rescuers to track and find them. But still there is no peace of mind. "I can’t help flinching,” a reporter wrote of the devices. “If a person with Alzheimer’s recoils from the idea of a tag, do you impose it on them?”

There are 5.3 million Americans with Alzheimer’s. While deaths from heart disease, stroke, breast and prostate cancer declined from 2000 to 2006, Alzheimer's deaths rose 47 percent.

"Alzheimer’s is a family disease,” said former U.S. Supreme Court Justice Sandra Day O’Connor, whose husband has Alzheimer’s and no longer recognizes her. “It may directly attack only one member of a family, but every family member feels the effects. Every family member loses something.”

Tell us what you think: If you’ve been responsible for the care of someone with Alzheimer’s, what have you sacrificed in the process? Should dealing with such an insidious disease continue to be almost the sole responsibility of family members?