A Primer for Caregivers of Loved Ones With Dementia

In Travelers to Unimaginable Lands: Dementia and the Hidden Workings of the Mind by Dasha Kiper, one day, when Mitch was filling in his coloring book, an activity he previously would have mocked, he told his wife, "I think there's something wrong with me."

"Well, honey," Elizabeth replied, "you have something called Alzheimer's, and that's OK. I'm here for you."

"No, that's not it," Mitch shot back. "Why would you even say that?"

Elizabeth subsequently regretted getting Mitch agitated. When Dasha Kiper sympathized with her attempt to give Mitch permission to feel confused by explaining the cause, Elizabeth agreed but added, "I just wanted him to get it, so both of us would know, and we could be in on it together."

For a moment, Kiper indicates, Elizabeth thought she had glimpsed "the old Mitch, the true Mitch, and confided in him," assuming he would understand. But the moment had passed, as it inevitably does with individuals afflicted with dementia.

In Travelers to Unimaginable Lands, Kiper, who has led caregiver groups for the Alzheimer's Association of New York for a decade, draws on philosophy, psychology, neurobiology, and literature to provide an elegant, empathetic, immensely informative, and insightful primer for caregivers as they try to navigate the fragmented, skewed world of the cognitively impaired.

People with Alzheimer's, Kiper points out, remember some things and not others, are capable of scheming, and continue to see themselves as a unified self. Their narratives often involve regressing into pre-dementia roles and pressing the buttons of spouses and children only they know how to press.

Because caregivers are "healthy," Kiper emphasizes, they assume they can be "reasonable" in dealing with dementia. But, she reminds us, "normal" minds have instincts, intuitions, drives, and needs, which sometimes generate distortion, denial, anxiety, anger, and, perhaps most important, a belief that afflicted loved ones "are in charge despite evidence to the contrary." To escape falling back on old patterns as Alzheimer's patients unleash emotional outbursts, caregivers must see them as simultaneously different from themselves but also similar—a difficult task, especially under duress, which requires shifting from unconscious to conscious responses.

This approach is necessary because holding Alzheimer's patients morally accountable for their actions risks dehumanizing them. One member of her support group, Kiper suggests, castigated his mother as ungrateful and nasty, in part because he did not want to let go of who she had been.

Kiper urges caregivers to accept that their loved ones are at once "lucid and confused, impaired yet oddly nimble, themselves and not themselves." And learn not to expect much from strategies—like post-it notes on the refrigerator—designed to change behavior. But she also recognizes that doubts about whether an essential self still exists can lead to questions about who caregivers "are suffering and sacrificing for."

Kiper knows that caregivers eventually learn that words have lost their capacity to effect change, if only because cognitively impaired patients soon forget them. That said, citing Samuel Beckett's Waiting For Godot, she suggests that conversation can ward off, albeit temporarily, the meaninglessness of existence. Language, she reminds us, is grounded in a faith in meaning, clarity, and connection. Talking has carried Vladimir and Estragon along, giving them something to do until dusk has fallen. As it did for one of Kiper's clients when he adamantly refused to hand his mother a glass of water, and she played along, impishly begging for it, and then, as she had when Peter was a child, shrieking with laughter.

It "may not be much," Kiper concludes, but with each conversation comes "hope, even if it's a resigned, almost oppressive hope." After all, music can stimulate individuals with neurological disorders. "Could not, then, the familiar rhythms and inflections of conversation also coax a dementia patient back to a reality they once shared with someone?"

And so, Kiper has come to believe that dementia disorders are best approached by reckoning with the disease's contradictions and letting each patient's mind "know it is worth knowing."