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Love, intimacy and caregiving in the age of Alzheimer’s

Away From Her
In “Away From Her,” actors Julie Christie and Gordon Pinsent deal with the delicate issue of what happens when dementia leads to infidelity.

Moviegoers get a jarring look at how dementia can change a close relationship in “Away From Her,” the release that’s drawing awards along with attention to complexities of the disease.

In a role that won her a Golden Globe for best actress, Julie Christie portrays an older woman whose growing confusion leads her to insist she leave the home she and her husband share to live in a nursing facility. The film’s plot thickens when her loving mate of 40-plus years watches as she shifts her affections to another resident — a man who shares her journey into memory loss.

It happens in the realm of dementia, experts say. The film has drawn media attention to a real-life scenario involving former U.S. Supreme Court Justice Sandra Day O’Connor, whose husband has dementia. He also has a new relationship with a woman in the assisted-living residence where he lives in Arizona, the couple’s son reported in a TV interview.

No data are available on how common it is for people with Alzheimer’s disease or other forms of dementia to develop new intimate relationships, said Gerise Thompson, regional center director for the Minneapolis-based Alzheimer’s Association of Minnesota and North Dakota. “It’s important to realize this is just one person’s story,” she said. “But we all have a need to have relationships, to be with other humans. That doesn’t change with Alzheimer’s disease.”

Relationships do change
But with Alzheimer’s and dementia, relationships often change. “What we often hear from caregivers is letting go and acceptance of it,” she said. The flip side is family members’ resentment that things aren’t what they used to be. The adult daughter who goes to visit her mother, for example, then angrily complains, “She doesn’t even know who I am.”

Along with its powerful story, “Away From Her” is raising awareness of Alzheimer’s disease, which affects 5 million people in America, a number expected to double as baby boomers age, Thompson said. She and others hope the movie will spark interest in the Alzheimer’s Association’s annual dementia conference, co-sponsored by the Mayo Clinic, scheduled for March 29 in St. Paul.

The movie, also winner of a New York Film Critics’ Circle Award for director Sarah Polley, offers an inside look at some of the tough challenges caregivers face.

The long goodbye
Seeing the movie turned out to be a reality check for Linda White of Rochester, whose husband, Ron, 71, has been diagnosed with frontal temple dementia. “With my husband, it was his personality that changed first,” she said. “You wonder if what you’re seeing is real. When you see this film, you see how the progression is started.”

White works as a paraprofessional in a middle school and attends an Alzheimer’s Association-sponsored support group for caregivers, where she has picked up a lot of information, she said. “I never pictured myself in this position,” she said. “I never realized what it is to take care of somebody. It’s just nice to be with a group of people you feel really comfortable with.”

The movie had its moments for her, she said, especially a scene where the couple clung to each other as they slow-danced in their living room. “My husband and I like to dance, and sometimes we would do that in the living room,” she remembers. “That was a very tearful moment for me. You see yourself losing that person.”

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