When they don’t recognise you anymore

It happened more than a decade ago, but the moment remains with her. Sara Stewart was talking at the dining room table with her mother, Barbara Cole, 86 at the time, in Bar Harbor, Maine. Stewart, then 59, a lawyer, was making one of her extended visits from out of state. Two or three years earlier, Cole had begun showing troubling signs of dementia, probably from a series of small strokes. “I didn’t want to yank her out of her home,” Stewart said. So with a squadron of helpers — a housekeeper, regular family visitors, a watchful neighbour, and a meal delivery service — Cole remained in the house she and her late husband had built 30-odd years earlier.

She was managing, and she usually seemed cheerful and chatty. But this conversation in 2014 took a different turn. “She said to me: ‘Now, where is it we know each other from? Was it from school?’” her daughter and firstborn recalled. “I felt like I’d been kicked.” Stewart remembers thinking, “In the natural course of things, you were supposed to die before me. But you were never supposed to forget who I am.” Later, alone, she wept. People with advancing dementia do regularly fail to recognise beloved spouses, partners, children, and siblings. By the time Stewart and her youngest brother moved Cole into a memory-care facility a year later, she had almost completely lost the ability to remember their names or their relationship to her.

“It’s pretty universal at the later stages” of the disease, said Alison Lynn, director of social work at the Penn Memory Center, who has led support groups for dementia caregivers for a decade. She has heard many variations of this account, a moment described with grief, anger, frustration, relief, or some combination thereof. These caregivers “see a lot of losses, reverse milestones, and this is one of those benchmarks, a fundamental shift” in a close relationship, she said. “It can throw people into an existential crisis.” It’s hard to determine what people with dementia — a category that includes Alzheimer’s disease and many other cognitive disorders — know or feel. “We don’t have a way of asking the person or looking at an MRI,” Lynn noted. “It’s all deductive.”

But researchers are starting to investigate how family members respond when a loved one no longer appears to know them. A qualitative study recently published in the journal Dementia analysed in-depth interviews with adult children caring for mothers with dementia who, at least once, did not recognise them. “It’s very destabilising,” said Kristie Wood, a clinical research psychologist at the University of Colorado Anschutz Medical Campus and co-author of the study. “Recognition affirms identity, and when it’s gone, people feel like they’ve lost part of themselves.” Although they understood that nonrecognition was not rejection but a symptom of their mothers’ disease, she added, some adult children nevertheless blamed themselves.

“They questioned their role. ‘Was I not important enough to remember?’” Wood said. They might withdraw or visit less often. Pauline Boss, the family therapist who developed the theory of “ambiguous loss” decades ago, points out that it can involve physical absence — as when a soldier is missing in action — or psychological absence, including nonrecognition because of dementia.

Society has no way to acknowledge the transition when “a person is physically present but psychologically absent,” Boss said. There is “no death certificate, no ritual where friends and neighbours come sit with you and comfort you.”

“People feel guilty if they grieve for someone who’s still alive,” she continued. “But while it’s not the same as a verified death, it is a real loss and it just keeps coming.” Nonrecognition takes different forms. Some relatives report that while a loved one with dementia can no longer retrieve a name or an exact relationship, they still seem happy to see them. “She stopped knowing who I was in the narrative sense, that I was her daughter Janet,” Janet Keller, 69, an actress in Port Townsend, Washington, said in an email about her late mother, diagnosed with Alzheimer’s. “But she always knew that I was someone she liked and wanted to laugh with and hold hands with.”

It comforts caregivers to still feel a sense of connection. But one of the respondents in the Dementia study reported that her mother felt like a stranger and that the relationship no longer provided any emotional reward. “I might as well be visiting the mailman,” she told the interviewer. Larry Levine, 67, a retired health care administrator in Rockville, Maryland, watched his husband’s ability to recognize him shift unpredictably.