Concealment and Compassion

Dementia care is too often marginalized in remote asylums, informal networks, or grim nursing homes. Why can’t entire buildings and whole cities be designed as caring environments writ large?

The author's mother with one of her elementary-school-aged students, 1973. Photographer unknown.
The author’s mother with one of her students, 1973 [photographer unknown].

When I call home to my parents in Central Pennsylvania, my mother always greets me with her customary “I was just thinking about you!” It’s the gracious — and, I believe, genuine — salutation she’s extended to pretty much every non-telemarketer who’s called the house for the last 40-odd years. After inquiring about my well-being, she then describes the weather, recounts the health of the dogs and the cat, and offers a play-by-play of her day — right up until the moment the phone rang. Even when she retired in 2004, after 34 years as a special education teacher, she was always in the midst of a dozen projects: raising funds for a wheelchair-accessible van for her former students, organizing supplies at the local soup kitchen, advising student teachers, recruiting tradespeople to provide pro bono maintenance for house-bound seniors. A single hour-long phone call with her would invariably include several interruptions from her collaborators: “someone’s beeping in; hold on a minute.”

As she slides into Stage 6 Alzheimer’s, my mother’s universe has contracted to encompass the house, the yard, my father, the animals, the few friends who can once again stop by to visit.

For the past few years, though, her social and physical universes have contracted to encompass the house, the yard, my father, the animals, and, since the distribution of COVID vaccines, the few friends who can once again stop by to visit. She discovered a couple years ago that she no longer knows how to find her way into town, so her car sits idle in the driveway. I drive it when I come home. Meanwhile she navigates inward. She dotes on her pets and throws herself into housework. My more recent calls have caught her in the midst of mopping floors or dusting furniture or watering plants on the porch. Sometimes she’s outside at the clothesline when I call, so she runs in to pick up the phone. She’s often a little winded, which is to be expected; in our family, housework has always been a full-body aerobic activity: If you don’t break a sweat while vacuuming, you’re not working hard enough. And as she slides into Stage 6 Alzheimer’s, I’m hearing new refrains in our phone calls. The dresser drawers and closets, the kitchen cabinets, the garage storage cubbies: these now merit daily attention. My dad tells me that day after day she empties and reorganizes the same drawers — those containing her mother’s jewelry and our school photos, travel toiletries from long-ago holidays, Christmas fragrance gift sets from dad. She’s tidied the photo albums and the boxes full of hand-written recipe cards. She’s sorted the old toys and cassette tapes and academic medals in my bedroom closet, and rearranged the same dozen or so jars of salsa, accumulated through countless improvisatory trips to the grocery store, in the kitchen cupboard.

The author's mother at her college graduation, 1969; and doing "memory exercises" while attending to the family dogs, 2021.
The author’s mother at her college graduation, 1969 [photographer unknown]; and doing “memory exercises” while attending to the family dogs, 2021 [photograph by the author].

What strikes me is that she has turned her attention to spaces of containment, sites of personal order, secure architectures of modest dimensions whose contents she can map and navigate and monitor. And what I want to explore here is how these apparatae serve as intellectual scaffolds, as metaphors that both hide and reveal the organizing logics and affects of those who live with and in proximity to dementia and disability.

A Shrinking World

My mom’s telescoping-inward is to some extent a response to the world picture her evolving brain is able to conjure. Alzheimer’s is, fundamentally, as the science writer Michael Bond explains, “a disease of orientation, a slow severing of ties with our surroundings.” 1 Our orientation within and movement through the world are directed by the interaction among several types of brain cells: the place cells, which activate when we find ourselves in a particular location; head direction cells, which help us determine which direction we’re facing; grid cells, which map our position as we move through a place; and boundary cells, which mark our position in relation to notable environmental limits. 2

For a person with Alzheimer’s, deterioration begins in the entorhinal cortex, where the grid cells reside. But even before the disease takes hold, the loss of grid cells can compromise our sense of direction and distance, cultivating wariness of open spaces and tempting us to stick to the edges of our terrains. The atrophy of place cells then makes it difficult for us to create cognitive maps of new places or to recall old maps of familiar ones. Recognizing the disease’s early impact on orientation and navigation, researchers are now exploring the potential of spatial tests to aid in advanced diagnoses.

Julie Cockburn, "The Author," 2021. ©Julie Cockburn.
Julie Cockburn, “The Author,” 2021. ©Julie Cockburn.

When places fade from memory, your internal compass and your mental map will fail you. Your home itself can become uncanny.

As we know from classical traditions of mnemonic loci, like the memory palace, memory is often tied to place. When certain places fade from one’s imaginable and navigable universe, one’s mnemonic geography shifts, too. Your internal compass and your mental map will fail you. Even the home itself can become uncanny. “The agonizing impression of not feeling at home is one of the symptoms of the disease,” the novelist Arno Geiger says of his father’s disorientation in The Old King in His Exile. “Not even one’s bed can offer respite.” 3 And if one has been moved to a residential care facility, that home and its bed have been uprooted. As the psychologist Jan Wiener says, in an interview with Michael Bond, “You move from an environment you know well, where you may function relatively well, to an unfamiliar place at a time in your life when you have problems learning unfamiliar places. Those orientation problems just add to the anxiety you feel after moving out of a home.” 4 Bond describes his own grandmother repeatedly asking, as she succumbed to dementia: “Am I here?” It is a question simultaneously geographical, existential, and ontological.

Some people with dementia respond to disorientation by wandering. In The 36-Hour Day, their best-selling guide about dementia care, Nancy Mace and Peter Rabins argue that this is a potentially therapeutic behavior, “the person’s way of saying, ‘I feel lost. I am searching for the things I feel I have lost.’” 5 This insight is influencing ideas about the provision of care in diverse ways. Many Alzheimer’s treatment manuals exhort home caregivers to install surveillance cameras, movement sensors, and other security measures to prevent such outward activity. Other designers and elder advocates instead emphasize the immeasurable value of outdoor views and access, and recommend that residential facilities be designed to accommodate safe wandering, both inside and outdoors. And lately technologists have developed programs to allow life-long hikers to continue their nature treks while being tracked by GPS. 6

Retreat and containment are pathologized in the Alzheimer’s literature: associated with paranoia, with hoarding, with the erasure of the self.

If we can understand and accommodate the desire among those with Alzheimer’s for outward exploration, what about responses like my mom’s: the retreat to small spaces of containment? Could they, too, be a means of cultivating a sense of home, archiving the familiar, plotting a navigable world on a micro-scale? I’ve learned that retreat and containment are often pathologized in the Alzheimer’s literature: they’re associated with paranoia and embarrassment, with hoarding, with bodily failures, and, furthermore, with the erasure of the self. Mace and Rabins describe how folks with Alzheimer’s try to conceal their condition with defensive language or compensatory behavior, and how family members can deny the illness through deflecting excuses or obfuscating justifications. Their book frames the home as a morass of hidden dangers — many of which can be addressed through furtive remediation: “Select a time when the person who has dementia is not with you,” they advise, and map out all the potential landmines. Hide dangerous tools and chemicals, put a hidden switch on the stove (which my dad did at our house), add child safety locks to cabinets, use color to obscure potential points of egress, place door locks where they’re not readily noticeable. 7 I’ve visited memory care facilities where external doors are screened by decorative walls and voluminous planters.

Julie Cockburn, "Chemistry," 2017. ©Julie Cockburn.
Julie Cockburn, “Chemistry,” 2017. ©Julie Cockburn.

There is, of course, a deep history of concealment in response to aging: consider the use of makeup, hair dye, and plastic surgery to hide the signs of maturation. “Before dementia became regarded as the product of disease in the twentieth century,” the minister and nursing home chaplain Lynn Casteel Harper writes, “it was … associated with insanity,” and its sufferers were commonly hidden away in asylums and state mental hospitals. 8 In earlier eras, patients were subjected to tortuous treatments intended to exorcise their demons, condemned to solitary confinement, bound with physical restraints, and, starting in the 20th century, plied with pills.

American nursing homes, writes the New York Times columnist Michelle Cottle, “sprang up in the 1930s as a gentler alternative to poor houses and later proliferated thanks to various government programs. As the name suggests, they take a highly medicalized approach to aging, and, by design, are reminiscent of hospitals.” 9 Hence the ubiquitous prescribing of pharmaceuticals, including psychotropic drugs. As a team of Times journalists recently reported, understaffed nursing homes host an increasing number of residents with schizophrenia who might once have been served by psychiatric clinics, and at the same time they over-diagnose mental illness among the remaining residents. These homes then justify the use of antipsychotic drugs like Haldol, Zyprexa, and Depakote — “chemical straitjackets” — as a way to allow staff to subdue patients without resorting to physical restraints. Such methods can also allow nursing homes “to hide serious problems — like inadequate staffing and haphazard care — from government audits and inspectors.” 10

In earlier eras, dementia patients were condemned to solitary confinement and bound with physical restraints. Today, they are plied with pills — ‘chemical straitjackets.’

As the Times’ Cottle has argued in a series of powerful articles, “professional care providers —overwhelmingly women and a majority of them women of color — often face tough working conditions for inadequate pay”; many live in poverty, take on multiple jobs, or rely on public assistance. 11 This overlooked and often undocumented labor force props up an industry with myriad dirty secrets, from abuse to mismanagement — problems made starkly apparent during the ongoing pandemic that has already claimed the lives of many nursing home residents. While more resources emerge to serve the well-to-do — including costly assisted living and continuing care facilities and more robust infrastructures for in-home care — traditional nursing homes, Cottle writes, become the “province of the poorest and sickest — those with few other options.” 12 In recent years the industry has seen widespread closures and consolidations and acquisitions by private equity firms, and falling occupancy rates during the pandemic have put many institutions on the brink of collapse.

Julie Cockburn, "Visor," 2021. ©Julie Cockburn.
Julie Cockburn, “Visor,” 2021. ©Julie Cockburn.

Yet the need for such facilities will only increase as a huge segment of the U.S. population ages into retirement with no savings and a false assumption that Medicare will cover their long-term care needs. 13 By 2034, for the first time, Americans 65 and older will outnumber those younger than 18; by 2060, we’ll have a half-million centenarians. Yet end-of-life financial and family concerns — much like our aging bodies — are often neglected, effectively concealed from much-needed public attention. Cottle notes that people who support aging family members in-home rarely define themselves as formal caregivers, and “don’t think of caregiving as a matter of public policy”; caring for one’s parents is “simply … what good sons and daughters do.” 14 The failure to develop systemic responses to these proliferating threats is attributable at least partly to the fraught emotional landscape of caregiving. As Grace Gedye reports in the Washington Monthly, “there’s no clear bad guy. … Instead of feeling anger, which research shows is linked to political activation, people struggling with providing for their parents tend to feel guilt and shame, directing the blame inward.” 15 All this suppressed emotion serves to hide a profound societal problem.

Psychological and Architectural Deception

The affective suppression surrounding dementia mirrors what’s often happening inside doctor’s offices and care homes. “Until recently,” Larissa MacFarquhar writes in a masterful New Yorker piece from 2018, “it was thought that telling the truth about a fatal illness was pointless and cruel. … To lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter.” She continues:

If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? And is direct lying different from various forms of passive lying, encouraging delusions, or allowing existing delusions to persist? What is more important — dignity or happiness? 16

In the mid-20th century, many experts in dementia care favored the former: dignity through a commitment to truth. They deployed clocks, calendars, pictures, maps, and charts to execute a program of “reality orientation” wherein teachers rehearsed facts about the contemporary world and the patients’ place within it. Patients wore name tags, which corresponded to tags on their beds and their seats in the dining room. These supposed facts — time, place, identity — would purportedly tether patients to the “reality” in which their loved ones lived. Yet those ties were, for the most part, merely nominal: repeating memorized tags and terms (until they slipped from memory a few minutes later) did little to make someone’s contracting, blurring world any more stable or comforting. As MacFarquhar acknowledges, “Keeping track of the weather seemed unnecessary when a patient was rarely allowed outside a locked ward. And keeping track of calendar and clock time only drew attention to the dreariness of nursing-home life, where each day was more or less like the last.” 17

Julie Cockburn, "Linchpin," 2019. ©Julie Cockburn.
Julie Cockburn, “Linchpin,” 2019. ©Julie Cockburn.

Nor did compulsory and continual (re-)orientation to a reality reduced to facts and figures make that reality feel any more true. Some practitioners, recognizing the cruelty and futility of reality orientation, developed new approaches. Validation therapy, developed by an American social worker in the 1980s, involved “enter[ing] into the emotional world of the person with dementia and validating their feelings, because feelings were more important than facts.” 18 A decade later, Penny Garner, a volunteer at a hospital in the Cotswolds, began using a method she called “Specialized Early Care for Alzheimer’s,” or SPECAL; in this approach, a therapist “uses selected intact memories from the person’s pre-dementia past and links these to their activities in the present.” The caregiver doesn’t question or contradict the person with Alzheimer’s; instead, they “listen to the expert” and “learn from them,” and in the process create what practitioners call “the Photograph Album.” Everyone who comes into contact with the person with dementia is expected to draw on these references in order to maintain “an empathetic and fully individualized caring response” — which amounts to cultivating a customized ontology, a bespoke world. 19

One of the hospital patients with whom Garner worked was a woman named Alice, an erstwhile master bridge player. Alice’s skills had declined, but Garner recognized that a particular velour tablecloth triggered Alice’s positive card-playing memories, and with that tablecloth Garner was able to cultivate for Alice a world that revolved around bridge and its associated competence and sociality. In the words of one of Garner’s colleagues, “Penny created a loop for her in which a large part of every day consisted of waiting to play, playing, having tea while playing, recovering from having played and discussing plans for playing tomorrow — like a happy version of the film Groundhog Day.” 20

Or The Truman Show. A prop can conjure up a world — but that world-making can also take on ambitious physical form. In a recent piece in e-flux architecture, the scholars Annmarie Adams and Sally Chivers describe De Hogeweyk, “the world’s first dementia village.” Located in a small city in The Netherlands, De Hogeweyk is a secure care facility encompassing a simulacral town square, main street, street lamps, bus stops, residential districts, functioning shops and restaurants, even ceilings lit to mimic daylight or nightfall. As Adams and Chivers write, the place “seeks to create a nostalgia for somewhere residents may have never been, but have always wanted to call home.” 21 Garner might regard such a facility as an architectural and habitable version of the Photograph Album. For their part, Adams and Chivers point out that the dementia village plays upon “the ongoing power of the ‘village’ trope as a caring environment.” The architecture of the facility, they write, “draws on the imagery associated with pre-industrial small towns, with pedestrian-friendly circulation, family-centered houses, and shared communal spaces.” In doing so it exemplifies what they identify as a prevailing trend, the effort “to camouflage serious illness by making healthcare environments that look like something else” — a mall, a spa, a hotel, a New Urbanist development.

Julie Cockburn, "Afternoon After Lunch," 2021. ©Julie Cockburn.
Julie Cockburn, “Afternoon After Lunch,” 2021. ©Julie Cockburn.

Yet what does it mean to create a healthcare facility in the image of a village, or for that matter of a city — in the image of “something else”? Why can’t building types or holistic urban plans themselves be designed as caring environments writ large? Perhaps the underlying problem is that as a culture we so often seek to contain, repress, or hide care work, and to isolate ill and disabled people in remote asylums and informal networks and abject marginal spaces.

Adams and Chivers argue that dementia villages represent an explicit rejection of such sites: “the uncaring institution, the traditional nursing home, and its long list of much maligned architectural features — the car-dependent entrance, double-loaded and crowded corridors, identical rooms, enclosed courtyards — and its human counterparts — caregivers dressed in white sporting highly visible medical technologies. The caring village is purposefully anti-medical.” Adams and Chivers are right — but the distinction should prompt us to question how medical care has historically been (an)aestheticized and materialized in equipment, interfaces, architectures, and urban form, and why the “medical” might be regarded as incompatible with or inimical to a more holistic understanding of what it means to provide care and to cultivate spaces for that provision. 22

The dementia village embodies a controlled aesthetic and spatial form, akin to a walled and gated community.

Dementia care facilities exemplify the entanglements of care and control — particularly control through containment and concealment. Medical care is still present; it’s simply hidden. In De Hogeweyk and the other facilities Adams and Chivers profile, the “village” is reduced to a controlled aesthetic and spatial form, and to staged transactional relationships. There is no lively public realm nor any of the productive frictions of a free society, perhaps for obvious reasons. “Essential to the way these places work is an impassable surrounding wall with only one entrance,” Adams and Chivers write. “Indeed, the dementia village is a walled, gated community, not unlike a prison in its plan. But while the bird’s eye view might look like jail, inside it’s more of a theater.” And as we learn from MacFarquhar’s essay, the staff at De Hogeweyk refer to the residents’ quarters as “onstage.” “‘Backstage’ — the administrative and medical infrastructure of the nursing home, the charts and the records, the medications and the stretchers — is kept out of sight.”

But do those theatrics constitute deception? Does all that concealment and containment contribute to treachery, disempowerment, and infantilization — to what scholar Tom Kitwood regards as the pervasive “malignant social psychology” that undermines the personhood and well-being of people with dementia? Sure, we could agree that memory care architecture serves to distract and manipulate residents’ behavior — but, frankly, what architecture doesn’t seek to construct a habitus in order to elicit some particular comportment? What’s more, we might also agree that simulacral architecture promotes what Kitwood calls “positive person work”; it creates a space for play and excites the senses, it facilitates relaxation and offers validation — that is, it accommodates “a person’s entire frame of reference, even if it is chaotic or paranoid, or filled with hallucinations.” 23 As Ike Kamphof and Rund Hendriks argue in their study of homemaking and truthfulness in dementia care, “different realities and beliefs could be considered to be genuine, meaningful realities for the person with dementia, even if they are not a reality for people around them.” 24 Designed objects and spaces might offer a scaffolding to validate those multiple, fluid, even conflicting ontologies.

Out of the Closet

Last year I published an article about the rise in the 18th century of a culture of secrecy, and the concurrent proliferation of new furnishings of secret containment: lock boxes, pockets, desks with false bottoms, commodes with secret drawers. 25 As I argued there, “we still resort to the construction of containers and keys and ciphers” to ensure the keeping of secrets and the protection of privacy. “Our values and policies about privacy and secrecy are still manifested in the (digital) boxes, drawers, and directories we make to contain our records and our private selves.”

A few years earlier, in this journal, I wrote about the even deeper history of the closet, which has long served as a fraught metaphor: “Its ‘binary logic’ of inside/outside, public/private, subject/object, has reified reductive models of fixed sexual identity and suggested that certain ‘skeletons’ need to be contained.” 26 We see plenty of drawers and closets — both literal and metaphorical, micro- and macro-scale — in the world of memory care. Here, especially, the closet, much like the keepsake box and secret drawer, “has never been merely a space for storing inert objects and suppressing secrets. It’s also been a site of creation, transformation, and mediation.”

Julie Cockburn, "Talking Heads," 2018. ©Julie Cockburn.
Julie Cockburn, “Talking Heads,” 2018. ©Julie Cockburn.

The closets and cupboards of dementia are where paranoid residents squirrel away their belongings and stockpile food — as well as where my mom repeatedly organizes, manipulating and re-ordering the material artifacts that chronicle her marriage, motherhood, friendships, and career. Memory caregivers have their own closets complete with skeletons. “In dementia care,” McFarquhar writes, “everybody lies.” Still, the embrace of “compassionate deception” often generates “deception guilt,” which caregivers then confront with an array of euphemisms: “therapeutic lies,” “brief reassurances,” “stepping into their reality.” We get the sense that much of the affective discomfort and ethical consternation in elder care is rooted in the caregivers’ own crises of self-conception: How does the deception affect me? 27 How does it reshape my own ontology? The epistemological crises of recent years — conspiracy theories, political factionalism — demonstrate just how tenuous is the concept of a “shared reality” against which a demented ontology might be measured.

Can spaces of containment be re-conceived as sites of creation and transformation; as incubators of epiphanies, dreams, fears, memories, new relations, new worlds?

Harper, the former nursing home chaplain, notes the preponderance of egocentrism in caregiving. Visitors shared with her their desire to “spend time with people who were ‘with it’ enough to ‘appreciate the visit’” — that is, “recall the visit later.” 28 They wanted their effort and identity to be recognized. But what does recognition mean in the ontological and epistemological realms of dementia? Harper cites the works of anthropologist Janelle S. Taylor, who acknowledges that her own mother “may not ‘recognize’ me in a narrowly cognitive sense, but my Mom does ‘recognize’ me as someone who is there with her, someone familiar perhaps, and she does not need to have all the details sorted out in order to ‘care’ for me.” 29 But the question can be turned around: “Do you, do we, recognize her? Do we grant her recognition?30 Harper is concerned about these limits on our capacity to care. “Whether or not her mother is deemed worthy of the same civic, collective responsibility afforded to others seems to hinge on the manifestation of a particular cognitive ability,” she writes. “Only if she is able to recognize others is she a candidate for greater social recognition.” 31

Perhaps we need to move away from this sort of binary logic of recognition and reality, which tends to focus on fixed identities and reciprocal relations. Perhaps we might instead consider spaces of containment, like the closet — or even the dementia village — as sites of creation, transformation, and mediation; as incubators of epiphanies, dreams, fears, memories, new relations, new worlds. Harper argues that there is much to gain by attuning ourselves to dementia’s own affect and reason. Most clinical treatments, she notes, “make little account for symbolic language, the motions of the body, or the intimations of desire.” While the person with late-stage dementia may be engaging in behaviors and expressions that make sense for their reality, our conventionally rational, logocentric logics might lead us to see them as vanished, vacant, gone.

“If personhood is gone in the late stages of dementia,” writes Harper, “then they are spared any grief that may come from an awareness of both their own dying and the anguish of those around them.” 32 Absence seems preferable to torment. And “absenting” — or, we might say, closeting — the diseased person provides comfort; it absolves caregivers of some measure of responsibility and guilt. But what if we reject the “vacancy” metaphor altogether and revisit dementia’s roots in madness — all the messiness we tend to shove in the closet? What if we embrace madness, in Harper’s words, “not as demon possession or constraint or a way to classify and contain people, but as needful folly in a world of stifling convention? Vacancy seems to suppress imagination; madness stirs it. … Madness, understood as a window on a social world less ruled by mental conformity, might have some salvageable meanings for dementia.” 33

Julie Cockburn, "Benevolence," 2021. ©Julie Cockburn.
Julie Cockburn, “Benevolence,” 2021. ©Julie Cockburn.

Fitted with GPS trackers monitored by the National Health Service, Alzheimer’s patients in the Highlands were free to roam the local wilderness.

The dementia village is typically constructed to effect a kind of centripetal force, to contain the madness, to keep fragile bodies inside, to preclude wandering, to offer interior attractions that outshine those outside the walls — largely because that world outside, much like Mace and Rabins’ paranoid terrain of domestic landmines, is perceived to be full of threats. But what if that external universe were less hostile to and more inclusive of different abilities? I keep thinking about a project I discovered in Michael Bond’s From Here to There, a book about wayfinding. Ann Pascoe, a resident of Helmsdale, a graying coastal town in the Scottish Highlands, worked with the Alzheimer’s Society and scholars at the University of Plymouth to establish a rural support network for those with dementia. 34 Residents who had once enjoyed wandering along the coast or through the local wilderness were now housebound — but when fitted with GPS trackers monitored by the National Health Service telecare team, they were once again free to roam. It might sound mad. What if they got lost? Yet if they did get lost, they could press a button on their tracker and speak to an operator who could guide them home or direct a caretaker to them. Or if their caregivers reported them missing, the tracking center could pinpoint their location and send support. Sadly, the tech company that supplied the tracking technology withdrew its support, Bond reports, and the project folded in 2017, once again confining these explorers behind locked doors.

Mad, Uncloseted Exploration

In researching this essay, I reread Rebecca Solnit’s 2005 book A Field Guide to Getting Lost; and I was struck by its ableist orientation — its presumption that the lost are simply “illiterate … in the language of the earth itself,” or that they “don’t stop to read it,” or that they haven’t yet mastered “the art of being at home in the unknown.” But what does it mean to be “lost” when home itself becomes unknown? Solnit recounts an exchange with historian Aaron Sachs, who suggested that explorers “were always lost, because they’d never been to these places before. They never expected to know exactly where they were. Yet, at the same time, many of them knew their instruments pretty well and understood their trajectories within a reasonable degree of accuracy.” 35 Folks with dementia lose both their instruments and trajectories; again, they lose their internal compasses and mental maps. Their lostness is not, as Solnit suggests, “mostly a state of mind”: it’s a product of deteriorating brain cells struggling to make sense of a world that offers too few legible landmarks and boundaries and spatial cues.

As in the case of the Scottish wanderers, technology can help to make nature more navigable. And more sensitive and thoughtful design can do the same for the built world. The critical disability studies scholar Aimi Hamriae, through their invaluable critiques of “universal” design, argues that “understanding the interdependence of aging-related disabilities” with other forms of disability “can expand the scope of the universal to include access for a range of emotional, cognitive, and sensory capacities, in addition to physical, mobility, or strength-related access.” 36 Likewise, G. Allen Power, a geriatrician and academic, envisions a Dementia-Inclusive Society that would involve nothing less than “redesigning neighborhoods, creating reciprocal, intergenerational networks, and educating the general public about how to support neighbors living with dementia.” 37

Advocates of a dementia-inclusive society call for small-scale homes with personalized rooms and spatial anchor points — places where residents can cultivate a sense of familiarity.

In some places this more inclusive society is starting to emerge. Both Harper and Cottle celebrate the Green House Project, a U.S.-based nonprofit that has worked with elder-care providers to open over 350 houses in 32 states. These ranch-style homes, with private bedrooms and bathrooms arranged around communal cooking, eating, and socializing spaces and in proximity to outdoor areas, accommodate ten to twelve residents; all are supported by dedicated aides who receive more advanced training and higher wages than most industry providers. 38 Many empirical studies of memory care facilities call for such small-scale homes; for homes with single, personalizable rooms, with clear signage and bright lighting, with outside views, and with lines of sight and direct access to all the spaces — dining, recreation, etc. — residents will need to access from their rooms. 39

These studies also call for spaces that are functionally legible and easily distinguishable from one another, with materials, furnishings, and colors that can aid with differentiation. (On the urban scale, such differentiation would be achieved with architectural features.) In well-designed homes, residents would be able to enjoy clear and simple circulation routes with spatial anchor points, or landmarks; some experts, drawing on the memory palace model, propose a “daisy chain” of recognizable objects. Lately I’ve visited a few homes where residents are invited to share personal trinkets or photos in small curios immediately outside their private doors, and I’ve observed that such spaces of containment and curation allow residents to construct personal identities, cultivate a sense of ownership and familiarity, and aid in their own and their neighbors’ wayfinding.

 The author’s mother in her local park, 2020.
The author’s mother in her local park, 2020 [photo by the author].

In “Losing Myself,” their immersive installation at the 2016 Venice Architecture Biennale, Niall McLaughlin and Yeoryia Manolopoulou explore dementia’s impact on spatial perception. 40 Projected onto the floor, which features the plan of the Alzheimer’s Respite Center in Dublin, are the perspectives of sixteen residents over the course of a day. We hear snippets of conversations, distant television sets, rain, the sea, tea kettles, bells. We see multiple hands, each contained in its own cell, working collectively to construct a complete plan of the building. We watch the light changing, the day passing, the residents progressively losing themselves in the futile pursuit of a single, cohesive representation of reality. Their hands toil to cultivate a comprehensive plan but ultimately render instead a prismatic ontology, a mad, haunting constellation of cells each housing a bespoke reality. A magnificent heterotopia, a world of many worlds. 41

For the last fifteen or so years of her career, my mom taught profoundly mentally and physically disabled children. Few could speak. Many couldn’t tell time or count or write their names. But they all came to class with a backpack stuffed with their favorite things, which they stored in a cubby of their own. Each child had their own shelf of books and activities, their own plate and cup, their own cabinet of medical or therapy equipment. These drawers and closets cultivated a spatial order from which arose a beautifully mad world without convention, without traditional forms of recognition or orientation, without people who lend themselves to classification and containment, yet a world of value and meaning and care nonetheless. That’s what I want for her, and for all those who refuse to be contained.

Author's Note

Thank you to Émélia Desrochers-Turgeon, Rana Abughannam, Pallavi Swaranjali, Federica Goffi, and the other organizers of and attendees to the September 2021 Architectures of Hiding conference at Carleton University, where I first presented this research. Thanks, too, to Kim Plowright and Susan Schultz for sharing resources they’ve created to process their own encounters with dementia; and to Julia Foulkes, Miriam Ticktin, and many other friends with whom I’ve spoken about the challenges of becoming caregivers to those who have, for so long, cared for us.

Notes
  1. Michael Bond, From Here to There: The Art and Science of Finding and Losing Our Way (Belknap Press, 2020): 201.
  2. Michael Bond, From Here to There, 72.
  3. Arno Geiger, Der alte König in seinem Exil, trans. J. Reisenberger (Munich 2013): 13; quoted in Ralph Fischer, “A Cultural Analysis of the Relationship Between Space and Dementia” in Eckhard Feddersen and Insa Lüdtke, eds., Lost in Space: Architecture and Dementia (Birkhäuser, 2014): 50.
  4. Michael Bond, From Here to There, 214.
  5. Nancy L. Mace and Peter V. Rabins, The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss (Johns Hopkins University Press, 2017): 142.
  6. See Michael Bond, From Here to There: 212–3.
  7. Nancy L. Mace and Peter V. Rabins, The 36-Hour Day: 69–71, 111.
  8. Lynn Casteel Harper, On Vanishing: Mortality, Dementia, and What It Means to Disappear (Catapult, 2021): 75.
  9. Michelle Cottle, “Nobody Want to Live in a Nursing Home. Something’s Got to Give,” New York Times (August 1, 2021).
  10. Katie Thomas, Robert Gebeloff, and Jessica Silver-Greenberg, “Phony Diagnoses Hide Higher Rates of Drugging at Nursing Homes,” New York Times (September 11, 2021).
  11. Michelle Cottle, “Will Congress Abandon America’s Seniors?” New York Times (June 4, 2021). Michelle Cottle, “Who Will Take Care of America’s Caregivers?” New York Times (August 12, 2021).
  12. Michelle Cottle, “Nobody Wants to Live in a Nursing Home. Something’s Got to Give.”
  13. Michelle Cottle, “Getting Old Is a Crisis More and More Americans Can’t Afford,” New York Times (August 9, 2021).
  14. Michelle Cottle, “Will Congress Abandon America’s Seniors?” New York Times (June 4, 2021).
  15. Grace Gedye, “The Strange Political Science on Elder Care,” Washington Monthly (July / August 2019).
  16. Larissa MacFarquhar, “The Comforting Fictions of Dementia Care,” The New Yorker (October 1, 2018).
  17. MacFarquhar, “The Comforting Fictions of Dementia Care.”
  18. Quoted in MacFarquhar, “The Comforting Fictions of Dementia Care.”
  19. “How Does the SPECAL Method Work?” Contented Dementia Trust.
  20. Oliver James, in Contented Dementia Trust, quoted in MacFarquhar.
  21. Annmarie Adams and Sally Chivers, “Deception and Design: The Rise of the Dementia Village,” e-flux architecture (September 2021).
  22. These questions are currently being taken up in “Treatment,” a fantastic e-flux architecture series on spaces of medical care, which includes Adams and Chivers’ work. Of course, many of these insights were prefigured in the writings of Michel Foucault — especially in his Madness and Civilization (1961), The Birth of the Clinic (1963), and Discipline and Punish (1975).
  23. Tom Kitwood, Dementia Reconsidered: The Person Comes First (Open University Press, 1997), 91. See also Gary Mitchell and Joanne Agnelli, “Person-Centered Care for People with Dementia: Kitwood Reconsidered,” Nursing Standard 30:7 (2015): 46–50.
  24. Ike Kamphof and Rund Hendriks, “Beyond Façade: Home Making and Truthfulness in Dementia Care” in Bernike Pasveer, Oddgeir Synnes, and Ingunn Moser, eds., Ways of Home Making in Care for Later Life (Palgrave Macmillan, 2020): 275.
  25. Shannon Mattern, “Encrypted Repositories: Techniques of Secret Storage, From Desks to Databases,” Amodern 9 (April 2020).
  26. Shannon Mattern, “Closet Archive,” Places Journal (July 2017):
  27. Sissela Bok, Lying: Moral Choice in Public and Private Life (Vintage, 1979).
  28. Lynn Casteel Harper, On Vanishing: 81.
  29. Janelle S. Taylor, “On Recognition, Caring, and Dementia,” Medical Anthropology Quarterly 22:4 (2008): 321; https://doi.org/10.1111/j.1548-1387.2008.00036.x.
  30. Taylor: 315.
  31. Lynn Casteel Harper, On Vanishing: 164.
  32. Harper: 91.
  33. Harper: 92.
  34. Michael Bond, From Here to There: 212–3.
  35. Rebecca Solnit, A Field Guide to Getting Lost (Penguin, 2005): 10, 14.
  36. Aimi Hamraie, “Designing Collective Access: A Feminist Disability Theory of Universal Design,” Disability Studies Quarterly 33:4 (2013).
  37. Described in Harper: 58.
  38. “Build Green House Homes,” The Green House Project.
  39. This paragraph draws on “16 Lessons: What We Have Learned”: Andrea Brambilla, Roberto Maino, Silvia Mangili, and Stefano Campolongo, “Built Environment and Alzheimer. Quality Evaluation of Territorial Structures for Patients with Dementia” in Carmelina Bevilacqua, Francesco Calabrò, and Lucia Della Spina, eds., New Metropolitan Perspectives: Knowledge Dynamics, Innovation-Driven Policies toward the Territories’ Attractiveness, Smart Innovation, Systems and Technologies, Vol. 1 (Springer, 2020): 178–86; Eckhard Feddersen and Insa Lüdtke, eds., Lost in Space (Birkhäuser, 2014); Richard Fleming and Nitin Purandare, “Long-Term Care for People with Dementia: Environmental Design Guidelines,” International Psychogeriatrics 22:7 (2010): 1084–96; Gesine Marquardt, “Wayfinding for People With Dementia: A Review on the Role of Architectural Design,” HERD 4:2 (2011): 75–90; Lesley Palmer, “Fear of Jumping,” Losing Myself (2016): Kurt Seemann and Deirdre Barron, eds., Proceedings of the 4th International Conference on Design4Health, Melbourne, Australia, December 4–7, 2017.
  40. See Losing Myself; Niall McLaughlin and Yeoryia Manolopoulou.
  41. Marisol de la Cadena, Mario Blaser, A World of Many Worlds (Duke University Press, 2018).
Cite
Shannon Mattern, “Concealment and Compassion,” Places Journal, November 2021. Accessed 29 Nov 2021. <>

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