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Turned away from care: Dementia patients with signs of aggression have limited options Date: 01/31/19


Tony Leys

By Tony Leys

Here’s one of the worst parts about the story I recently wrote about nursing homes shunning dementia patients: You could replicate it almost anywhere in the country.

Dementia patients can essentially be blackballed from nursing homes if they’ve ever shown signs of aggression. This is especially likely for early-onset dementia patients, who tend to be relatively young and physically strong. Nursing home administrators worry that such patients could hurt staff members or other residents if they lash out because of confusion or panic rooted in their dementia. That’s why nursing homes increasingly decline to take such residents, meaning some patients wind up living in facilities hundreds of miles from their families.

“It’s heartbreaking. It’s a great hole in our family,” a northwest Iowa woman told me of having her 55-year-old husband placed in a nursing home three hours from their home.

I’d heard for several years that this was a growing problem. But I’d never had a family willing to talk on the record about their experience with it. I declined to do an anonymous-source story, because it wouldn’t resonate with readers. It would read like fiction.

Also, anonymous-source stories about mental-health issues can worsen the stigma. They imply the subject is so shameful that people can only talk about it if their identities are masked.

I needed to find Iowans who would talk publicly about seeing a loved one with dementia turned away from nursing homes because they’d been labeled as aggressive.

The state Alzheimer’s Association was leery at first, but it eventually put out word that I was looking for such families. I always say in such situations that our initial meeting will be off the record, and if families decide afterward they don’t want to participate in the story, we’ll drop it.

Two families agreed to meet with me. One of them referred me to a third family who’d gone through the same thing.

After the story published, several more families contacted me, suggesting there’s a wealth of people willing to talk about this tragedy if you can find them. If any reporters want to cover the issue in their areas, I’d suggest showing my story to local patient advocates as an example of what the coverage could be.

Tony Leys has worked for the Des Moines Register since 1988 and has been its main health reporter since 2000. He is an AHCJ board member.