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Advocacy

Voice for the Vulnerable

A 'genius grant' winner speaks out for the elderly.

Marvin Joseph/The Washington Post

By David Menconi

Marie-Therese Connolly collects stories from doctors and lawyers, but not the sort to break out at a dinner party. For example, there's the 96-year-old grandmother who was raped by her grandson and wound up losing her independence when she was put into a nursing home. Or the 68-year-old woman in Iowa whom paramedics found with her legs stuck to the floor, glued down by her own waste, newspaper and cloth—even though she had a 51-year-old "helper" living rent-free in her house. The man had done little to assist her but helped himself to her checking account to fund his gambling.

Understand, Connolly's interest in horrific cases of abuse and neglect is not the least bit ghoulish. Connolly, '81, is writing a book on elder abuse, an already huge problem that will only grow. According to the U.S. Census Bureau, the dependency ratio—the number of people 65 and older for every 100 people ages 20 to 64—is projected to rise from 22 in 2010 to 35 in 2030.

Connolly is one of the few voices advocating for elderly victims of physical and psychological abuse or financial malfeasance. Over the years, she has devoted enough effort—in her work on prosecution at the Department of Justice, on Senate legislation and now through her own nonprofit organization—to draw the attention of the MacArthur Foundation, which awarded her one of its "genius grant" fellowships in September.

"Everybody has a story and they're all pretty stark, about the profundity of life," Connolly says. "It's really important to talk about, because the stories make it real in a way. But it's hidden in plain sight. The numbers on this are already at epidemic proportions. Factor in the demographics of 77 million baby boomers aging, and it's daunting all the way around."

Various international surveys estimate that 2 to 10 percent of elderly people suffer some form of abuse at the hands of caregivers, either in their own homes or in assisted-living facilities. That figure becomes more alarming in one particular population: A 2010 UC-Irvine study showed that 47.3 percent of those with dementia are being abused by caregivers.

Martha Deevy, director of Stanford's Fraud Research Center, says financial fraud costs Americans somewhere between $15 billion and $60 billion per year, and seniors are the favored target. "Any number you look at on this is big, but it still under-reports the actual problem," Deevy says. "When we talk with Washington policy makers, we tell them this isn't something for 10 or 15 years from now. There are going to be a whole lot more people in this category very soon."

Connolly grew up in Minnesota, the child of two doctors, and came to Stanford thinking she'd follow her parents into medicine. Her interests gravitated toward psychiatry and then the legal profession when she took a class in mental-health law. She went on to law school at Northeastern University, a federal clerkship and then a job with the Department of Justice in Washington, D.C., where she brought civil fraud cases, later heading its Elder Justice and Nursing Home Initiative.

"It was sort of a tabula rasa," Connolly says. "I worked on a component of the crime bill, providing additional authority to bring cases of abuse and neglect at federally funded facilities."

But enacting standards proved difficult for a myriad of reasons, including the fact that it's a problem most people would rather ignore. Even for those willing to engage the issue, it's often not clear how one would define a "successful outcome" in elder-abuse cases. If someone with dementia is living at home with abusive family members but still doesn't want to leave, should that person be forced into a nursing home out of safety concerns?

"You have to balance autonomy, safety and privacy with the values of society and the needs of other family members," Connolly says. "That's a big reason why we've had trouble providing clear guidance. What set of wishes should we honor in respect to people's autonomy with dementia? Where do the boundaries move as people develop dementia, or do they?"

It doesn't help that caregiving is demanding, and often undertaken by people ill prepared to handle it. Most people working on the problem do so in isolation, so Connolly has tried to raise public awareness of the issues. She became one of the field's more visible spokespersons (and a regular contributor to mainstream publications like the Washington Post). In 2007, she left the Department of Justice, deciding she wanted to write more freely than she could as a government employee.

Connolly still lives in Washington and is working with other leaders to establish an advocacy group called Life Long Justice. "We're busy fund-raising and thinking strategically about how to marshal the best evidence, experience and expertise to protect vulnerable seniors." Her cause will get a substantial boost from her new status as a MacArthur Fellow, which comes with a prestigious $500,000 grant paid out over five years. Winning it was "a game-changer, and wonderful validation."

Connolly's other major project is to finish a book based on stories she's been collecting. One problem with bringing attention to elder abuse is that its victims are seldom around long enough to serve as faces of the issue. All that's left are the stories.

Another obstacle is ageism. Connolly's colleague Lisa Gibbs, MD '96, a family physician specializing in medical investigation of elder abuse at UC-Irvine's Elder Abuse Forensic Center, points out society's double standards. "We don't recognize that leaving a person with dementia alone or locked in a car for hours is a safety hazard, but we do with a child," she says. "There have been caregivers in nursing homes who confessed to hitting a patient out of frustration, yet were found not guilty. If that occurred in a daycare center, I don't think society would be quite so understanding about an adult hitting a child from frustration."

"The real problem is that there's been no coherent data collection," Connolly says. "People in the child-abuse field have been collecting data since the '70s, but not here. I think of what I do in terms of bridge-building between research, knowledge, policy and practice. I try to use the experiences people have had on the front lines and coalesce that into a form that's useful to policymakers and lawmakers, and I try to bring attention to it.   

"We can't alleviate all the suffering, but we can make it a lot better than it is," Connolly adds. "We need to give people better tools to talk about it, because it's not been assigned a very high priority. There are great pockets of stuff going on out on the front lines, people doing great work. But there's not the support or networks you need, and people have to keep reinventing the wheel."


David Menconi is a reporter at the News & Observer in Raleigh, N.C.

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