Fear, stigma make Alzheimer's patients slow to seek help

10/13/2012 12:00 AM

10/12/2012 10:35 PM

Looking back, Jennifer Harrington can see how the stigma surrounding Alzheimer's disease made her mother's last decade of life harder than it had to be.

For one thing, Harrington said, fear of the disease led Joan Preston to avoid seeking a diagnosis for a long time – and that long period of denial made talking with her about her memory decline and planning for her future more difficult.

"She was forgetting things, like what day of the week it was," said Harrington, 60, who lives in Roseville. "She was getting upset about things that didn't used to upset her. She'd get angry and hostile. She was getting lost in her neighborhood and having trouble finding her way back to her apartment in her complex.

"She knew something was happening, but she really didn't want to face it."

And neither did many of the people in Preston's life.

The recently released World Alzheimer's Report focuses on the enormous role that stigma plays in keeping people from seeking help with dementia and Alzheimer's disease – and isolating them after they're diagnosed.

Too often, people don't know how to act around people with Alzheimer's.

The report found that 75 percent of people with dementia have experienced negative interactions after their diagnosis, so much so that one-fourth of people with Alzheimer's tried to hide their illness for fear of being discounted and dismissed by others.

What's more, 40 percent of people with dementia said that friends and loved ones avoided them or treated them differently after they were diagnosed.

"Other people don't always know what to do or say," said Michelle Johnston, Alzheimer's Association of Northern California regional director. "I think that makes people less likely to share the diagnosis.

"With the great numbers of baby boomers coming along, we need the nation and the world to embrace the disease. We need to learn to support the people who have it and their caregivers. But if we're afraid to talk about it, that will never happen."

One in eight older Americans – 5.4 million – have Alzheimer's disease, the nation's sixth leading cause of death.

Preston, a retired editor for IBM, died in 2007 at age 78. By that time, she'd gone from forgetting where she lived to forgetting how to eat. She had moved from her longtime residence in the Bay Area to an assisted living facility near her daughter in Roseville, where she could receive care.

"Moving Mom there was the most traumatic day of my life," said Harrington. "I drove a block and pulled over and sobbed.

"But she felt at home. She could relax and not be worried all the time about being judged. She was free to have her disease and not constantly fight her decline."

Even so, Harrington saw how patronizing people could be to her mother and other people with Alzheimer's – and how refreshing it was when someone recognized the person still living inside the disease.

"I learned to go into my mother's world, because she wasn't coming into mine," said Harrington. "You have to recognize the childhood of the disease but not be condescending about it.

"Alzheimer's isn't as visible as other disabilities. When a person has Alzheimer's, that's the way they are in their life. You can still treat them with respect."

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