It happened more than a decade ago, but the moment remains with her.<\/p>\n
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.<\/p>\n
Two or three years earlier, Cole had begun showing troubling signs of dementia, probably from a series of small strokes. \u201cI didn\u2019t want to yank her out of her home,\u201d Stewart said.<\/p>\n
So with a squadron of helpers \u2014 a housekeeper, regular family visitors, a watchful neighbor, and a meal delivery service \u2014 Cole remained in the house she and her late husband had built 30-odd years earlier.<\/p>\n
She was managing, and she usually seemed cheerful and chatty. But this conversation in 2014 took a different turn.<\/p>\n
\u201cShe said to me: \u2018Now, where is it we know each other from? Was it from school?\u2019\u201d her daughter and firstborn recalled. \u201cI felt like I\u2019d been kicked.\u201d<\/p>\n
Stewart remembers thinking, \u201cIn the natural course of things, you were supposed to die before me. But you were never supposed to forget who I am.\u201d Later, alone, she wept.<\/p>\n
People with advancing dementia do regularly fail to recognize 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.<\/p>\n
\u201cIt\u2019s pretty universal at the later stages\u201d 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.<\/p>\n
She has heard many variations of this account, a moment described with grief, anger, frustration, relief, or some combination thereof.<\/p>\n
These caregivers \u201csee a lot of losses, reverse milestones, and this is one of those benchmarks, a fundamental shift\u201d in a close relationship, she said. \u201cIt can throw people into an existential crisis.\u201d<\/p>\n
It\u2019s hard to determine what people with dementia \u2014 a category that includes Alzheimer\u2019s disease and many other cognitive disorders \u2014 know or feel. \u201cWe don\u2019t have a way of asking the person or looking at an MRI,\u201d Lynn noted. \u201cIt\u2019s all deductive.\u201d<\/p>\n
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<\/a> in the journal Dementia analyzed in-depth interviews with adult children caring for mothers with dementia who, at least once, did not recognize them.<\/p>\n \u201cIt\u2019s very destabilizing,\u201d said Kristie Wood, a clinical research psychologist at the University of Colorado Anschutz Medical Campus and co-author of the study. \u201cRecognition affirms identity, and when it\u2019s gone, people feel like they\u2019ve lost part of themselves.\u201d<\/p>\n Although they understood that nonrecognition was not rejection but a symptom of their mothers\u2019 disease, she added, some adult children nevertheless blamed themselves.<\/p>\n \u201cThey questioned their role. \u2018Was I not important enough to remember?\u2019\u201d Wood said. They might withdraw or visit less often.<\/p>\n Pauline Boss, the family therapist who developed the theory of \u201cambiguous loss<\/a>\u201d decades ago, points out that it can involve physical absence \u2014 as when a soldier is missing in action \u2014 or psychological absence, including nonrecognition because of dementia.<\/p>\n Society has no way to acknowledge the transition when \u201ca person is physically present but psychologically absent,\u201d Boss said. There is \u201cno death certificate, no ritual where friends and neighbors come sit with you and comfort you.\u201d<\/p>\n \u201cPeople feel guilty if they grieve for someone who\u2019s still alive,\u201d she continued. \u201cBut while it\u2019s not the same as a verified death, it is a real loss and it just keeps coming.\u201d<\/p>\n 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.<\/p>\n \u201cShe stopped knowing who I was in the narrative sense, that I was her daughter Janet,\u201d Janet Keller, 69, an actress in Port Townsend, Washington, said in an email about her late mother, diagnosed with Alzheimer\u2019s. \u201cBut she always knew that I was someone she liked and wanted to laugh with and hold hands with.\u201d<\/p>\n 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.<\/p>\n \u201cI might as well be visiting the mailman,\u201d she told the interviewer.<\/p>\n Larry Levine, 67, a retired health care administrator in Rockville, Maryland, watched his husband\u2019s ability to recognize him shift unpredictably.<\/p>\n He and Arthur Windreich, a couple for 43 years, had married when Washington, D.C., legalized same-sex marriage in 2010. The following year, Windreich received a diagnosis of early-onset Alzheimer\u2019s.<\/p>\n Levine became his caregiver until his death at 70, in late 2023.<\/p>\n \u201cHis condition sort of zigzagged,\u201d Levine said. Windreich had moved into a memory-care unit. \u201cOne day, he\u2019d call me \u2018the nice man who comes to visit\u2019,\u201d Levine said. \u201cThe next day he\u2019d call me by name.\u201d<\/p>\n Even in his final years when, like many dementia patients, Windreich became largely nonverbal, \u201cthere was some acknowledgment,\u201d his husband said. \u201cSometimes you could see it in his eyes, this sparkle instead of the blank expression he usually wore.\u201d<\/p>\n At other times, however, \u201cthere was no affect at all.\u201d Levine often left the facility in tears.<\/p>\n He sought help from his therapist and his sisters, and recently joined a support group for LGBTQ+ dementia caregivers even though his husband has died. Support groups, in person or online, \u201care medicine for the caregiver,\u201d Boss said. \u201cIt\u2019s important not to stay isolated.\u201d<\/p>\n Lynn encourages participants in her groups to also find personal rituals to mark the loss of recognition and other reverse milestones. \u201cMaybe they light a candle. Maybe they say a prayer,\u201d she said.<\/p>\n Someone who would sit shiva, part of the Jewish mourning ritual, might gather a small group of friends or family to reminisce and share stories, even though the loved one with dementia hasn\u2019t died.<\/p>\n \u201cTo have someone else participate can be very validating,\u201d Lynn said. \u201cIt says, \u2018I see the pain you\u2019re going through.\u2019\u201d<\/p>\n Once in a while, the fog of dementia seems to lift briefly.<\/p>\n Researchers at Penn and elsewhere have pointed to a startling phenomenon called \u201cparadoxical lucidity<\/a>.\u201d Someone with severe dementia, after being noncommunicative for months or years, suddenly regains alertness and may come up with a name, say a few appropriate words, crack a joke, make eye contact, or sing along with a radio.<\/p>\n Though common, these episodes generally last only seconds and don\u2019t mark a real change in the person\u2019s decline. Efforts to recreate the experiences tend to fail.<\/p>\n \u201cIt\u2019s a blip,\u201d Lynn said. But caregivers often respond with shock and joy; some interpret the episode as evidence that despite deepening dementia, they are not truly forgotten.<\/p>\n Stewart encountered such a blip a few months before her mother died. She was in her mother\u2019s apartment when a nurse asked her to come down the hall.<\/p>\n \u201cAs I left the room, my mother called out my name,\u201d she said. Though Cole usually seemed pleased to see her, \u201cshe hadn\u2019t used my name for as long as I could remember.\u201d<\/p>\n It didn\u2019t happen again, but that didn\u2019t matter. \u201cIt was wonderful,\u201d Stewart said.<\/p>\n The New Old Age is produced through a partnership with The New York Times<\/a>.<\/em><\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n