Lynn Casteel Harper On New Ways Of Understanding Dementia
BY DEREK ASKEY — DECEMBER 2023
Nearly 7 million Americans have Alzheimer’s disease, most of them elderly, with 10 percent of people over the age of sixty-five affected. But as prevalent as it is, the condition is still widely misunderstood and stigmatized.
You may know someone with dementia: a parent, a grandparent, a spouse, a colleague. For me it was my gran, my beloved maternal grandmother, who lived next door when I was growing up. She had Alzheimer’s, the brain disease that accounts for the majority of dementia cases. She died in 2012, her symptoms having steadily intensified in her final years, a progression familiar to many: first she forgot words, then names, then how to drive her car. I remember visiting her on sunny afternoons after I had moved away from home, when she was no longer able to converse. We sat in her living room in companionable silence, the wall clock ticking louder than I remembered it ever having done before. I’d think of sentiments I wanted to express but couldn’t. Somehow it seemed enough for her that I was there.
Baptist minister, nursing-home chaplain, and writer Lynn Casteel Harper has been working with the elderly for years, particularly those affected by dementia. She, too, has a familial connection with Alzheimer’s: her grandfather and other family members have died with it, and she’s at high risk of developing it herself. Her 2020 book, On Vanishing: Mortality, Dementia, and What It Means to Disappear, takes an unconventional approach to the subject, exploring how our culture ostracizes those it no longer sees as valuable members of society — not just people with dementia but anyone who isn’t “contributing.” The book is as much about literature, philosophy, and theology as it is about cognitive decline. Harper explores how Western culture overvalues self-sufficiency, and she argues for a more humane way of treating those who have dementia — by better integrating them into society, acknowledging their contributions, and recognizing that any of us may develop cognitive symptoms at some point in our lives.
Originally from southeastern Missouri, Harper earned her master of divinity at Wake Forest University in Winston-Salem, North Carolina, and completed her chaplaincy residency at Robert Wood Johnson University Hospital in New Brunswick, New Jersey. Her book, with its striking title, came to my attention shortly after I’d learned that The Sun’s founder and editor, Sy Safransky, was developing dementia [see Sy’s essay in this issue — Ed.]. True to the magazine’s spirit of candor and vulnerability, he encouraged me to speak with her.
I visited Harper at the Riverside Church in Manhattan, where she serves as Minister of Older Adults. As she showed me around the historic building, we were frequently interrupted by churchgoers and members of her community — most of them elderly — who wanted to say hello. We spoke at length in her cozy office on one of the church’s upper floors. A few weeks earlier, she said, an injured pigeon had mysteriously walked in, as if seeking her spiritual counsel.
Askey: You’ve written about your mother giving you your childhood papers — drawings and schoolwork and even the meeting minutes for a club you’d formed with your friends. You say the you who’d made the materials was so unfamiliar that the papers felt “foreign.” How does this type of routine memory loss, which everyone experiences, relate to dementia?
Harper: Though the losses with dementia are more startling, even upsetting, they are still part of the continuum of human experience. We’re always negotiating our personalities, which are not static. When I saw those childhood papers and remembered the secret club I had formed with friends in middle school, there was a sense of rediscovering that little girl who was writing and who craved community and friendship, but who also had some guardedness about the treasures she kept. Looking back, I can say, “I honor that self, even though I’ve outgrown it, and there are still gifts there to receive.”
We experience multiple selves throughout our lives. It is actually a gift to forget some of them. If we remembered everything, it would be a burden. When people have conditions where they can’t easily forget, it can be a problem for them. There is something to be said for not having to carry around everything we’ve encountered in a given day, week, year, or phase of life. And there’s something magical about rediscovering something you did at a different time that surprises you. It may not always be a happy surprise. There may be shame associated with whatever your previous self did or didn’t do. I think it requires some compassion for yourself, some gentleness, to hold the multiple selves that you have been.
We shouldn’t be so tied to the idea that the predementia self was the most pristine or pure or true version of yourself, and the one with dementia is somehow less valid. That creates stigma and gives others permission to distance themselves: This isn’t the person I know. My sixth-grade self was still the real me, and she was connected to and involved with her world. She’s still a part of me, even if I’m not living that experience any longer.
Askey: Surveys consistently show that Alzheimer’s is the most feared disease in the U.S. What does that say about us?
Harper: I’ve read that people worry more about other conditions — cancer is always high on the list — but people fear Alzheimer’s. Over the course of working with people with dementia, encountering it in my family, and writing a book, I’ve seen how overwhelming the fear around cognitive decline can be. People have knee-jerk reactions that I don’t think they would with other diseases: “If I get a diagnosis, I’m going straight to the gun shop,” or “Just wheel me out in a lightning storm holding a golf club.” Sometimes the fear shuts down conversation. People don’t even want to talk about this. Or they make statements like “That is the worst thing that could ever happen to a person; hard stop.” I sometimes hear, “You must be a really special person to work with those people” — which I’m not. I’m a normal person who has the same fears as everyone else. I’ve experienced the fear of dependency, of not having any way to control a situation, of helplessness: What if I have to rely on other people? That fear is cultural.
So what do we do with it? Fear itself isn’t the problem. It’s just a feeling. But fear leads to stigma. People with dementia report losing friendships at a much higher rate than their peers, and they’re under greater threat of elder abuse. A lot of that has to do with unexamined fear. To be alive is to be fragile, and it’s natural to be afraid. But if we’re unwilling or unable to work with our fears — naming them, taking some of the air out of them — they grow.
For me, the fear was reduced when I got to know people living with dementia and realized they are not defined by their disability. They are not lost. They are not empty shells, even though they are often treated that way. They wish for the same things I wish for, which are to love and be loved, to be treated as a whole person with a history.
Askey: You write that our cultural values “often define a person’s worth in terms of financial, physical, and intellectual power,” and this makes us devalue those with dementia. How do we address that, short of changing our culture?
Harper: I don’t know if there is an answer. Tom Kitwood was a social psychologist in Britain who did a lot of research on people living with dementia. He was going into care homes in the 1980s and 1990s, and he came to realize that the environments in which these people lived were profoundly stigmatizing and might actually have accelerated their decline. He noted the interactions they experienced throughout a day, and he labeled seventeen malignant things that happened to them, such as infantilization, being ignored, being banished. He said it wasn’t about the malice or ill will of individual caregivers. It was part of the air we breathe.
I think the first step is to build communities where an alternate value system is articulated. Here at the Riverside Church we try to keep an eye on the people who are often last in line for services, for attention, for respect. When people living with dementia are being dismissed, what does it say about those of us who are doing the dismissing? And how do we create communities where people are valued beyond what the dominant culture says makes a person valuable? What we try to do here is lift up the sacred value of all people, so that there’s nothing you can do or not do that makes you less worthy of attention and resources and respect.
That’s not easy. It’s not like you set your mission statement and it just happens. But I think it’s hard to do apart from community. And it doesn’t have to happen only in faith communities. It can also happen in artistic communities, intentional communities. The problem is individualism — this idea that we can go it alone. The solution cannot be lovely, kind individuals working in isolation. It takes a group effort.
Askey: Is dementia viewed differently in cultures where multiple generations of a family tend to live in the same house or area and caring for elders at home is more commonplace?
Harper: I hesitate to paint with a broad brush, but I will say communities that don’t prize independence above all else fare better. Successful aging isn’t about remaining disease-free, which is our dominant narrative in the U.S.: you age successfully because you remain “sharp as a tack,” “fit as a fiddle,” or whatever we want to call it. But when cultures are able to frame aging in a larger sense of being part of community, of being a bearer of wisdom and deserving of honor, it removes some of the stigma. The reaction isn’t “Oh, now Dad needs help. This is completely devastating.” Rather this is part of what it means to be in a loving relationship, and this person is still highly valued within our family or community.
The fear of dementia gets wrapped up in our view of aging in general. Not all people who live into old age necessarily experience cognitive diminishment, but dementia is often age-related. So how we approach any number of issues related to old age often affects how we think about cognitive change.
Askey: Do you see those attitudes changing as baby boomers — who until very recently were the largest generation in the U.S. — become elderly?
Harper: I hope so. What I’m seeing with some boomers who are newly initiated into old age is that they’re taking that same approach they’ve taken toward other social-justice struggles they’ve engaged with in their lifetimes, such as civil rights and women’s rights, and are applying it to the limits and stereotypes placed on old age. Environmentalist Bill McKibben, now in his sixties, founded a group called Third Act to try to harness older people’s wisdom and experience in organizing to address climate change. This kind of recognition of older adults’ positive potential and power gives me hope. The flip side is that boomers can also have that sense of “We will extend youth forever, and that will be the model of what it means to age successfully.” This idea of so-called super seniors is stigmatizing to those people who do experience limitations and challenges. They’re not in the “successful-aging club.”
Askey: They’re not riding a bicycle in a drug commercial.
Harper: And some people were never on the bicycle — people who were never part of white, middle-class, well-heeled, well-resourced America.
Askey: Black Americans develop Alzheimer’s and other dementias at nearly twice the rate of whites, and women make up almost two-thirds of Alzheimer’s cases. How do you understand those imbalances?
Harper: Those questions are being explored by experts in a lot of disciplines right now. I will say that health is not just a matter of the genetics you inherit. It has to do with your whole social-cultural environment: of being held or not held dear, being honored or not. And the place where people have been forced to live affects their well-being, especially if there are environmental toxins in the air or the water, like in Flint, Michigan. A whole network of things that disenfranchise people affect brain health as well. Do they have access to fresh vegetables in grocery stores?
Of course, Alzheimer’s also cuts across culture and class. People from all backgrounds are vulnerable to this disease. But we can’t live in a bubble and say that our social environment has no effect. We know that brain trauma increases your chances of getting dementia later. So it has to do with the levels of trauma people are experiencing. It has to do with how women’s health — and especially what it means to age as a woman — is often understudied. The same populations in this country who are under threat for any number of health disparities are also under threat for this particular disease.
Askey: Jack Kevorkian’s first assisted-suicide patient, Janet Adkins, killed herself after she found out she had Alzheimer’s. You write, “Is this not the fascist impulse, the imperialist compulsion? Or might it be the compassionate impulse, the yearning to be free of unnecessary affliction? How blurry the distinction between exterminating weakness and alleviating suffering.” Where do you see it transitioning from one to the other?
Harper: The dominant culture often sees Janet Adkins, or any number of people who end their lives after getting an Alzheimer’s diagnosis, as heroic. I want us to step back from that and think about what we’re really saying, which is “My strong self will not permit weakness.” That’s a scary way for a society to operate, which is why I use language like “fascist impulse.” What does this attitude say, not only about our relationship to ourselves but to others in our country who don’t fit our definition of strong?
I’m not a masochist. I don’t believe that suffering is necessarily efficacious or that people should have to endure unnecessary suffering for some moralistic reason. But I want to question the assumption that dementia brings only unrelenting suffering. “There’s no life there,” we’re told. “There’s no joy. There’s only diminishing relationship and disappearing love.” But how much suffering is created because we withdraw our best care and respect and love and public resources from these people?
Askey: You describe your grandfather, who had severe dementia, leaning into his wife’s coffin and saying, “I don’t want to join you yet, babe!” It’s grim but also sort of funny. I was wondering where humor figures into the “vanishing” of someone with dementia.
Harper: I’ve experienced plenty of joy and humor in people living with dementia — just laughing at the human condition or loosening up a little bit. Like my grandfather leaning into my grandmother’s coffin. There was something very true in what he said. I had never known him not to drink from the cup of life, whether he was flying airplanes or serving as a physician or on the Rotary Club. That was him talking, not the dementia.
As a chaplain on a dementia unit, I met a man I’ll call Tom. To get to know him, I asked him a lot of questions about his life. The next day, when I walked onto the unit, Tom put his head in his hands and said, “Oh, no, not you. Are you here to ask me a million questions again?” In the moment it felt bad, like a little dagger to my ego. [Laughs.] But he was right! I had peppered him with questions and probably exhausted his limited capacities. That was a truth that I needed to see, and he showed it to me. Those of us who don’t have dementia too often fail to recognize how we can learn from people who do. We’re not just bringing them our enlightened selves: Isn’t it wonderful that we’re so caring toward these folks? No! What are we learning?
I remember a woman, Bernice, pointing to my gray hair and saying, “Oh, you’re aging, too — just like us.” I had to laugh. She included me in their boat: We’re human in this. Welcome aboard. I love those touch points of honesty and humor. It takes me out of my need to always have it together, to always have an answer, to always be the one who’s bringing aid to someone else.
Askey: Those who are “mad” are often seen as insightful precisely because they’re mad. We believe there’s a relationship between genius and madness. But I don’t think we extend that to people with dementia, because they “aren’t themselves.” Does the intent of the speaker determine the value of the insight?
Harper: I get what you’re saying: with madness, the person’s almost too much themselves. [Laughs.] And we do have a view of madness around artistic creation that isn’t entirely negative. It can be brilliant or eye-opening. I just saw a van Gogh exhibit at the Met. We don’t say, “This painter had some mental problems, so let’s not pay attention to his work.”
Askey: If anything, it’s the opposite, right?
Harper: Right! We’re leaning in, like: “Tell us what we can learn.” Why don’t we do that with people who are experiencing cognitive change or impairment? Why aren’t those of us who are “temporarily able-brained” — to use the phrase from [sociologist] Morris Friedell — leaning in to pay closer attention?
I think of Willem de Kooning, the abstract-expressionist painter who likely lived his final years with dementia. Some of his earlier paintings have this “mad” quality to them — the tortured artist struggling to get something on the canvas. And then, as his dementia progressed, it seemed things came easier to him. Some of his paintings late in life are much more spacious and airy. For a while the value of those paintings wasn’t recognized — maybe because he was no longer the “mad genius” who’d created the earlier ones, and work created by a person with dementia isn’t as valued. Why is that?
I don’t want people with dementia to be seen as mad or lunatics. And yet the frame that’s often put around them instead is one of vacancy: They’re leaving their body. They’re a husk or a shell. The light’s on, but nobody’s home. There’s this sense that their essential self is progressively vanishing, which reinforces the idea that what they do or say or create isn’t worthy of our careful attention.
“There’s no life there,” we’re told. “There’s no joy. There’s only diminishing relationship and disappearing love.” But how much suffering is created because we withdraw our best care and respect and love and public resources from these people?
Askey: No one has come back from Alzheimer’s and reported to us what that was like, so we have a limited ability to imagine it. You’ve talked about how, as someone who sleepwalks, you know something happened but can’t quite recall it. Do you think dementia is like that?
Harper: I have used my sleepwalking experiences as a learning opportunity — not that people with dementia are asleep or in any way sleepwalking. But if, for instance, I start to clean the kitchen counter while I’m sleepwalking, it doesn’t help for my husband to try to stop me or to argue or rationalize. The best he can do is just let me do my thing or simply offer reassurance, like “Things are OK. You can come back to bed. I’ll take care of it in the morning.” I think those experiences give me a window into what it’s like for people with dementia who want to communicate. To have people negate your efforts is painful and embarrassing. The right thing to do is to provide reassurance and presence as opposed to correction.
I’ve also gravitated toward the Christian mystics, who move past the cognitive and into a deeper level of connection — with the self, with the universe, with the divine — that transcends words. I belong to a tradition that values words: studying the Bible, preaching erudite sermons. But the mystics say that silence is supreme, that the divine is actually met in silence — is silence. If we can become more comfortable with absence, and even see it as sacred, then I think we can become more comfortable with gaps and absences and loss within ourselves — and not see that as a diminished capacity to relate to the divine.
The Cloud of Unknowing is a mystic text from the fourteenth century, author unknown, that talks about darkness and going into these foggy realms where we meet God in a pure form, beyond our concepts, beyond our capacity for abstract thought, beyond language. That is among the holiest experiences, and leads us to see ourselves as more than just a set of narrowly defined mental abilities.
Askey: Were the mystics achieving that foggy state through deprivation and isolation? How did they get there?
Harper: Practices varied. Some of it was ascetic — like you say, deprivation, whether that’s fasting or long periods of solitude. But many of the mystics lived and worked among others, often in a religious community. A lot of them would have used contemplative prayer. A practice that’s regained some popularity now in Christian life is called “centering prayer”: periods of silent meditation where, if thoughts start to enter, you bring your mind back to a sacred word. The idea is not to ruminate on that word or make it the prayer, but to use the word when the mind becomes distracted, to invite the self back to silence.
In Protestant life — at least, in my strand of it — the balance is often tipped toward intellectualism and activism and doctrine: What are you doing? How are you active? What are you learning? I think this bent can help frame the care of people with dementia in terms of social justice, but it can also stigmatize those who have trouble doing or thinking as they used to. I hope that contemplation and action can complement each other and coexist.
Askey: You write of your grandfather: “He had touched a new place within himself, meek and mild, free from what is assertive, controlled, and strong.” Similarly you describe Ralph Waldo Emerson’s dementia as a state where he was constantly in the moment, a condition for which he’d previously expressed admiration.
Harper: At the end of Emerson’s life, his friends would come and just look at him. They said his head was “in the empyrean” — the heavens. The idea was that Emerson had come to some kind of peak, as opposed to a valley, and his friends enjoyed his presence. That viewpoint is within the realm of possibility for us, if we can wrap our minds around the idea that dementia has a positive side. The same is true of many relationships throughout our lives. For my friends who have young children, it’s both beautiful and hard. We shouldn’t consign people to one category or the other: either you’re sick or you’re well; you’re here or you’re gone. It would be dishonest to say dementia is without hardship or suffering, but it’s also true that people can live a long time with dementia, and live well; that people with dementia experience love and joy and relationship.
When I worked as a chaplain, there was a son who had a strained relationship with his mother, who was on the dementia unit. He said she had never been affectionate with him. But now, when he came to see her, she hugged and kissed him. For the first time in his life he was experiencing warmth and acceptance from her. But those stories are not the ones that make headlines. What dominates newspaper coverage is the suffering, the tragedy narrative. Shedding some aspects of the past in dementia might be a relief to the family or even to the person themselves. I’ve seen people with severe mental illness enter into dementia, and some of the more distressing manifestations of their illness soften or fall away. That’s not always the case, but it’s worrisome when just one story captures the public’s imagination: that it’s tragic, that it’s suffering. Then that’s all we can see.
Over the past several years people living with dementia have formed groups and are speaking for themselves and pushing back against the idea that they’re not “here”: “Come talk to us,” they are saying. “We have something to share.” I remember speaking with Jim, an activist who had a dementia diagnosis. He knew I was writing about dementia, and he told me, “Tell them we’re not suffering.” I think about that a lot. I have taken it as my marching orders.
Askey: You refer to the “abiding self” of those with Alzheimer’s: retired teachers continuing to teach kids in their imagination, people singing songs from their youth, and so on. I remember my gran, even when she was deep into her Alzheimer’s, recalling songs she liked and also worrying about two little girls who were playing outside — clearly a memory of my mom and my aunt when they were little. What have you observed of the self that abides?
Harper: I love how you framed that story about your grandmother. You could have just said, “She saw people who weren’t there. That was the dementia.” And there’s some truth to that. But there’s also something real underneath — something firmly intact within her. As a mother, she still cared.
My grandfather was a physician, and one day when he was in assisted living, someone fell, and he went to try to pick the person up. The aides didn’t understand that his behavior was not aggressive. It was a care impulse. Once my mother had explained his past to them, they started calling him “Dr. Jack” and let him push wheelchairs or guide walkers.
What often happens with dementia is people are given one role to play: a sick person. And everything is siphoned into that one role. Anything they try to do outside of it is viewed through the dementia narrative. But people want to have different roles. I don’t want to be defined by my most “diminished” self.
It’s a common trope that dementia is like a second childhood: they’re regressing. But no child has had the experiences these people have had or lives in an adult body and carries within them a lifetime of memories, including memories that cannot be spoken or accessed easily.
Askey: It’s hard for loved ones when someone with Alzheimer’s forgets them. How do we recalibrate our expectations in these relationships?
Harper: I certainly remember when my grandfather stopped saying my name, and the pain of that: If you don’t remember me, how can you love me? But love can persist beyond the ability to recall.
What does it mean to remember love? We don’t say that, because young children won’t remember experiencing love, we’re not going to give it to them. We have a sense that they will remember, even if they won’t be able to recall the experience once they’re grown. They somehow carry in their body the impression of being loved and cared for, of being in beautiful places. So why, when someone is at the other end of life, do we think it’s not equally important for them to experience love and care? Doesn’t that say more about those of us who don’t have dementia, and our ego needs, than it does about the people living with dementia? Memory is more than simply pulling files from our brains. Memory isn’t just a private affair of an individual’s brain. It involves the whole body and other people.
What does it mean for us as a larger community to hold memories for someone, as opposed to one person having to do all the work? Maybe it’s more important for me to remember my grandfather and who he is than it is for him to be able to recall a certain memory about me.
Askey: Were you able to reach that conclusion while he was living?
Harper: There were moments. My family and I did the best we could to share who he was with caregivers who hadn’t known him as long. If we could do that throughout the life-span, I think that’s better than waiting.
If we can find communities of trust — communities that aren’t based just on shared interest or shared ability, but that move into what Aristotle calls “virtue friendship” — that would go a long way toward creating a counterculture that says, “You’re experiencing dementia, but you’re not discarded. We’re going to hold for you the memories that you can’t hold.”
Askey: You decided not to get tested for a gene that indicates an increased risk of developing dementia, including Alzheimer’s disease, and you vowed to speak of “when I get dementia” as opposed to “if.” Have you stayed true to that decision? Has your resolve been challenged?
Harper: Yes and yes. I have not gotten tested. My dad’s last surviving sibling died with Alzheimer’s this year, and my father entered an Alzheimer’s drug study. Though he does not have Alzheimer’s yet, he has the gene variant APOE4, areas of concern on his brain scans, and a strong family history of the disease. He doesn’t have symptoms, but because of his risk factors, he enrolled in the AHEAD Study at Washington University Medical Center in St. Louis. It’s partially funded by some drug company, of course. The idea is that the drug will head off symptoms before they emerge.
Alzheimer’s is a part of my lineage, and I am at a high risk. So I do try to say, “When I have dementia,” or, “As someone who doesn’t have dementia yet.” A woman in a workshop I led was very upset with me for saying that. She told me I was inviting the disease, but I don’t see it that way at all. I see it as a way to normalize the discussion of dementia.
If I begin to talk openly about the possibility of dementia in my future, perhaps it can lower the barrier for other people to talk about it, and to name their fears and hopes around it. Though some have received my efforts negatively, for the most part I think people find my choice of language intriguing. It’s not meant to be glib. It’s just better than thinking, That won’t be me. I’m healthy; I walk every day; I take my vitamins and eat right.
Askey: We’ve all seen the ways in which aging and cognitive decline can be politicized. There’s no shortage of headlines about President Biden’s fitness for office.
Harper: Using dementia as a nasty term that automatically discounts anyone who has a slip of the tongue or struggles to find a word — that’s totally untenable and has nothing to do with the journey of dementia. Frankly, Donald Trump received that label, too, from the Left. Anytime we do that to undercut an older politician’s authority, it’s stigmatizing to people living with dementia. It’s using their condition to make fun of or discount someone else. That’s not fair to people with dementia. And it’s not fair to older people like Biden, who are hyperscrutinized. If a middle-aged politician forgot a word, would we blame their age? I forget things all the time, and no one blames my age yet.
Harper: Yet. If we live long enough, blame for the normal things we forget, the gaffes, will eventually be assigned to our age. And a narrative of negativity spins out from there. The use of that narrative in politics holds a mirror up to the broader culture. What does it say about our values? What does it say about us?
Knowing and being connected to people living with dementia is important, but you might still come away with a stigmatizing narrative. Listening to those who are advocating for less stigma helps. It has been revolutionizing for me. There’s an international group called Reimagining Dementia that’s composed of people living with dementia, and also activists and advocates. The group doesn’t dwell on who has a diagnosis or not. Some people want to share that information, but others say that’s not how they want to be viewed, or that’s not their experience. It’s one of the most joyous, hopeful groups I’m a part of.
It all comes back to community: How do we shift the culture? We press forward and try to find others who want to be a part of what we’re doing. Reimagining Dementia recorded a song recently, sung by people living with dementia and those who care about them. They are using music, using art, using dance to get outside of the strictures we put on ourselves. The meetings are some of the highlights of my month.
Askey: Your friend Janet’s mother had Alzheimer’s, and she asked Janet a question that has stuck with me since I read it: “Are you me?” There’s a permeability of the self implied in that question.
Harper: Where do I stop and you start? We work hard to maintain a sense of individual self when, in truth, we are connected in a lot of ways. Janet’s mother’s question gets at that in a philosophical way, but also a concrete way. Her daughter is in some ways concretely her, through DNA, and in other ways not.
I think one of our greatest tools in dealing with dementia is the arts. Yes, we value medicine’s contribution, but the arts allow us to enter into dementia experiences, to express something beyond the self. We’re not the first to confront these questions. While writing On Vanishing, I was drawn to Shakespeare, especially King Lear: “And, to deal plainly, I fear I am not in my perfect mind.” The old monarch is slipping a little, losing some of his power, and feeling that slip. I keep going back to Whitman, whose “Song of Myself” expresses it so loosely and so expansively: “I too am not a bit tamed, I too am untranslatable.” We don’t have to present a self to the world that’s consistent and constant across time and space. We’re untamed.
I found myself going to the Bible as well and looking back at Hebrew poetry. The ancient Hebrews did not view the brain’s executive function as the apex of what it means to be human. It was always about community and their relationship with the divine and how that was, and is, a dialogue. I turned to the New Testament and Jesus’s teachings: “Blessed are the meek, for they shall inherit the earth.” Empowering the meek and humble is a very different approach than the one we take today. I was also drawn to the parables in the gospels, especially the teachings around the lost and found: the woman who loses the coin and sweeps the entire house to try to find it; the shepherd who leaves the ninety-nine sheep to go in search of the lost one. The message to those who are lost is: “We’re only whole if you’re with us.”
Some of my most profound experiences of faith have occurred in the presence of people living with dementia: the quiet and peaceful moments of being together and feeling held in a kind of transcendent love. What people with dementia experience is in some ways a holy mystery. They don’t become irreligious. They don’t forget their faith. When they are fully supported and offered ways to connect with their faith — whether through ritual or music or prayers or scripture or objects from nature — they remember their faith in a full-bodied way. I’ve seen people who could no longer speak or walk or talk recite a prayer or sing together. It goes back to the mystics, who say religion is an experience of the divine even deeper than what we often call faith.
Askey: Could we think of that as a faith felt in the body?
Harper: In Christian life we say a community of believers is the body of Christ, and we are each members of the body. We are only whole as a body of Christ when the weakest member is fully attended to. There’s really no I. Now, whether we live up to that is another story.
Remembrance is the act of repairing the body to wholeness. So if people who live on the margins — immigrants, asylum seekers, our LGBTQ neighbors, older adults, people living with dementia — if these people have been severed from the community, it’s our duty to remember them, and not because we’re doing a nice thing, but because the body, our church, suffers when we don’t include them.
When we see people with dementia as fundamentally defective, our default is the charity model. We’re giving, but there’s no reciprocity or mutuality. We don’t ask, “What is the gift this person is bringing to this community, and how can we receive that gift?”
Askey: Our founder and editor, Sy Safransky, titled one of his books Many Alarm Clocks, based on a quote from the Russian mystic Gurdjieff: “A man may be awakened by an alarm clock. But the trouble is that a man gets accustomed to the alarm clock far too quickly. He ceases to hear it. Many alarm clocks are necessary and always new ones.” It’s so easy to slip into that day-to-day assumption of permanence, when we are at all times defined by impermanence.
Harper: Some people try to avoid this by using an app that makes their phone ding a few times a day to remind them they’re going to die. It’s a spiritual practice for them to face life in the light of their own finitude.
We cling to the illusion that tomorrow will be like today. We have to plan as if that’s the case, but we also have to reckon with the reality of impermanence. When we tell ourselves, “Because of these resources I have, because of these things I do, I will be buffered from that fate,” that’s an illusion — one that creates distance between us and people who are experiencing disability or illness. It reinforces a hierarchy.
Askey: The elderly are probably the most aware of impermanence, and they are precisely the people we’re choosing not to listen to.
Harper: To grow older isn’t necessarily to grow wiser, but it gives us that opportunity. We have a lot of experience at our back. How do we translate our experience into wisdom and then create a culture that is welcoming of that wisdom? There are some groups — Sage-ing International, Gray Panthers — trying to promote older people as wisdom keepers and leaders.
Askey: What have you observed about the way those with Alzheimer’s communicate with each other?
Harper: When I worked at a nursing home, I ran a small group for people living with deep dementia, and some profound relationships developed among the members — often out of my view, since I wasn’t there all the time. There was a sense of companionship, of holding one another. People wanted to hold hands or offer each other a comforting touch. Of course, there were also people who didn’t get along. Personalities persisted, as did personality clashes. But that’s true in every community. It’s not that everyone gets dementia, and suddenly they all appreciate each other’s quirks. But I’ve seen care and compassion and mutual support develop between them as well.
When my grandfather had dementia, my mom hired a woman who just hung out and had coffee with him several mornings a week. Something beautiful developed between this woman and my grandfather. She had a lightness and looseness around him that we didn’t. She didn’t have dementia, of course, but she could reflect him back to us in a different light when we were seeing something heavier.
Askey: Historically treatment of dementia has often been inhumane: deprivation, spinning patients in a chair, and on and on. How do you think we will look back on our current treatment of people with dementia?
Harper: I think we will see how incomplete our approach was: The obsession with a cure. The overuse of psychotropic medications to “manage distressing behaviors.” Only something like 10 percent of that is necessary, research shows. A lot of those psychotropic medications are dangerous for people living with dementia. Although medication has its place, creating supportive care environments and properly paying and respecting direct-care workers allows us to handle distress without automatically resorting to a pill. We have a tremendously stressed healthcare system that relies too much on pharmaceutical interventions. I hope we’ll see this as a time when progress was being made on the edges, when expressions of distress came to be seen for what they are: communication.
Askey: Obviously COVID isolated elders even more. What lessons can we take from that?
Harper: Well, everybody got a dose of isolation, but people in nursing homes were absolutely devastated, and more than half of people in nursing homes live with some form of dementia. The slowness with which we responded to nursing-home deaths during COVID reflects how we view them. The lieutenant governor of Texas said, basically, that old people should take the hit on this one so we could keep the economy open. That was, like, day ten of the pandemic. And Trump, in the fall of 2020, after we’d all seen devastation in nursing homes, said COVID “affects virtually nobody,” just elderly people. So “nobody” and “elderly people” are essentially the same. But this rhetoric came from the Left, too. Peter Singer, a well-known ethicist from Princeton, said although we lost a lot of lives to COVID, we didn’t lose that many years. How do you place a value on a year of life for someone you love?
I hope COVID can help us reexamine the segregation that we’ve normalized for older people and people with dementia, who live in nursing homes separated from the wider community. Their care workers were also devastated by the pandemic; hospitals were prioritized over nursing homes, even though people were dying at a much faster rate in nursing homes.
We need to ask ourselves: How do we want to age? How do we want to live when we have dementia or need help? How do we create communities that don’t just segregate people? How do we pay people well for doing the care work that’s so valuable? If my grandfather’s caregivers had left overnight and not come back, he would have been a wreck. Our lives would have been turned upside down. That to me says their work is valuable. But because the people doing this work are primarily women, and disproportionately women of color, we fall back on the long-standing practice of devaluing their labor. I hope, as part of changing how we treat people with dementia, we can reevaluate the racism and sexism embedded in our economy, especially our care economy. I hope we can keep lifting people up.