Confusion in the storm: Alzheimer's patient refused to evacuate

By JoNel Aleccia, NBC News

Amid the chaos of superstorm Sandy, an 89-year-old woman with Alzheimer's disease rebuffed rescuers' efforts and refused to evacuate her New Jersey home this week, raising questions about her safety -- and about the dilemma posed by dementia patients during a disaster.

Caregivers with the group Senior Helpers had taken Helen Gatanis, who lives in Salem County, to a local nursing home for care early Monday. But when the woman with mid-stage Alzheimer's disease realized where she was, she grew distressed and combative, said Valerie Neighbors, president of the local franchise.

"She was pushing people to get them out of the way," Neighbors said. "She actually walked out of the door of the facility."
                 
There was no way to force Gatanis to stay -- she's competent to make such decisions -- so, rather than upset her more, caregivers took her back home to wait out the storm.

"We got her something to eat and handed her a flashlight," said Neighbors, who supervises 60 elderly clients in four counties. "She said, 'Why am I going to need my flashlight?'"

Gatanis survived Monday night with no ill effects; Senior Helpers staff were blocked by downed trees and road closures from reaching her, so they called the Pennsville Township Police Department at least twice to send officers to check on her.

As of Wednesday, Gatanis had power, the roads were being cleared near her house and a caregiver was with her.

But her situation highlights the plight of some 5.4 million people in the United States who have dementia -- and the family members who care for them. Because of their condition, they're more vulnerable than others to the impact of disasters, and less able to cope with them, experts say.

Early estimates suggested that the storm had the potential to affect about 20 percent of the U.S. population, which would include hundreds of thousands of people with dementia. An estimated 1 in 7 Alzheimer's patients lives alone, and nearly half have no appointed caregiver, according to recent figures from the Alzheimer's Association, a national advocacy and education group.

"I was concerned," said Ted Gatanis, 62, of Livermore, Calif., one of Helen Gatanis' two sons. "I know she wants to stay in the home that dad built."

In addition, her son said, she was reluctant to leave Inkie, her 3-year-old tuxedo cat, a constant companion.

"Inkie is like her reason to live," Ted Gatanis said.

He added that his mom was a lifelong homemaker who cherished the house her husband, Ted Gatanis Sr., a chemical plant worker, built himself in 1989. The elder Gatanis, who died in 2009, was an avid collector of antique tools, an obituary said, and the couple loved to garden and sell their vegetables from a nearby stand.

Helen Gatanis' refusal to leave her home, even in the midst of a life-threatening storm, is common, said Ruth Drew, director of family and information services for the Alzheimer's Association.

Because their cognitive abilities are impaired, people with dementia become easily confused, frightened and agitated.

"Sometimes it's heartbreaking," Drew said. "They've misinterpreted what's been said to them. They may perceive themselves to be in very real danger. They may be acting in a way that's completely reasonable when you are in grave danger."

Ted Gatanis saw his mother during a lengthy visit earlier this month and said he talks to her weekly. She seemed to do "OK," during the storm, he said: "She was watching the rain."

Assistance from Senior Helpers, which sends trained nurses and caregivers into patient homes, allows Gatanis' mother to retain her independence, despite her age and illness. She gets care about four hours a day, but is able to tend her own needs most of the time, staff said.

Many of the clients enrolled in the program -- which charges an hourly fee ranging from $19.50 an hour to $23 an hour in the South Jersey area -- are adamant about living on their own, Neighbors said.

"This is something that's extremely important to them," she said. "The men built the homes; it's their pride and joy."

Helping people with dementia amid the chaos of a disaster can be challenging, Drew said. Such patients require clear, calm explanations and instructions -- and lots of time.

"If we seem agitated, upset or panicked, even without saying a word, we telegraph that to the people around us," she said. "If we can take a deep breath and stay calm and talk to someone in simple, slow language, in a warm, friendly way, oftentimes that enables them to respond at the best of their capacity."

Rather than expecting the patients to adapt to the surroundings, caregivers must adapt the environment to them, if possible, Neighbors said.

"That person doesn't have a healthy brain," she said. "We need to modify our approach."

Planning ahead for emergencies is vital. That might involve creating an evacuation plan and preparing an emergency kit that contains vital papers, medications and other necessary supplies.

The Alzheimer Association's 24-hour helpline – 1-800-272-3900 -- logged dozens of calls from East Coast family members worried about patients with dementia, Drew said.

Such concerns are only going to be more common during future disasters as America's population ages. Nearly half of all people older than 85 in the U.S. have Alzheimer's disease, Drew notes.

"This touches families across the board," she said. "It's something we see a lot of now and something that we'll continue to see more of."

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