What can we learn from dementia about spirits, and time travel? What do two dogs, drunk policemen and giving birth teach us about dementia? These and other questions animate this collection, which thinks with dementia through themed constellations.
This article is part of: Thinking with dementia → Introduction
Fourteen stories
This series is a collection of fourteen stories that are written to ‘think with dementia’. Over the past three years, six PhD students from the anthropology department at the University of Amsterdam have conducted ethnographic research on dementia care in the Netherlands. When the PhD projects came to a close, we organised a workshop to bring our work …
This article is part of: Thinking with dementia → Time
On a Thursday evening, five men gather around a dinner table. [1] Their host, a scientist from Surrey, England, has left them a note telling them to begin eating at 19:00 if he is not yet back himself. And so they do. They are in the midst of speculating about their hosts’ whereabouts when the door quietly opens. Their host …
This article is part of: Thinking with dementia → Time
We knew each other from the drop-in centre. Aspects of our daily life concerns had been shared. ‘We’ were drop-in centre participants: the majority had been diagnosed with a form of dementia and were living alone. Others were volunteering, overseeing the daily course of events or, like myself, doing research. We had shared with Willem (74) attempts at keeping up …
This article is part of: Thinking with dementia → Time
Sitting on orange seats in the corridor, Ms Verbeek, her niece Hannie and I are waiting for the general practitioner. Ms Verbeek seems a little restless and is quiet. She is 79 years old and lives by herself in a small town in the south of the Netherlands. We have met several times before, sometimes one on one, and sometimes …
This article is part of: Thinking with dementia → Time
One way to ‘think with dementia’ is to phenomenologically shift from ‘memory’ to ‘remembering’ and to mine ‘remembering’ for its qualities and potentialities as socio-culturally limned experience. Whereas ‘memory’ invokes static mappings of representation and world, ‘remembering’ is temporally emergent. Whereas ‘memory’ invokes individual capacities, ‘remembering’ is a situated, genre-ed activity that invites co-participation. ‘Remembering’ exudes qualities of performance, not …
This article is part of: Thinking with dementia → Time
I have chosen to tell a story based on six photographs I took of my father, Ivio Duranti (1918-2009) in the last year of his life. He was never diagnosed as having Alzheimer’s disease, but he definitely had some of the symptoms of dementia, including memory loss, disorientation, apathy, reduced speech production, and occasional hallucinations, even though he seemed able …
This article is part of: Thinking with dementia → Time
One of the most bewildering and fascinating things about spending time with people with dementia is that they can rapidly travel through time. This was most clear with Mrs B., a daydreaming woman of 86. Her skin was deeply wrinkled and in the nursing home she kept pretty much to herself. One day, I had a long, stretched out conversation …
This article is part of: Thinking with dementia → Daily life
Attending to what makes up ‘the everyday’ has long been a challenge for scholars in the social sciences. [1] Researchers from different disciplines and perspectives have explored how mundane things matter, how ‘big issues’ sit in the small. Feminists, for example, have insisted that ‘the personal is political’, to show how patriarchal relationships are founded in the mundane ways of …
This article is part of: Thinking with dementia → Daily life
During my first visit to Ghana in 1998, I was involved in a research project that looked at possible co-operations between healers and psychiatric clinics. I stayed in the healing camp of Prophet Abbam II, who was known in the area to heal patients with mental health problems. My presence at his healing church attracted many visitors, who kindly brought …
This article is part of: Thinking with dementia → Daily life
During fieldwork on dementia care in a nursing home, I was struck by the complex and layered orderings of space, time and subjectivity in daily life on the wards, and the struggle this implied for people with dementia.
On her ‘daily rounds’ strolling through the nursing home ward, Mrs Hansen repeatedly expressed great relief and pleasure on meeting a familiar …
This article is part of: Thinking with dementia → Daily life
Babe, my grandpa, was born on the kitchen tiles of a small Seattle home. His dad, whose own grandpa had run a seedy downtown brothel, would disappear and reappear throughout his life. But Babe was not like the men who came before him. He spent his youth delivering newspapers and parking cars to support his mother, went to war when …
This article is part of: Thinking with dementia → Daily life
For my doctoral research, I interviewed family members living with a loved one with early-onset dementia, a diagnosis that one receives under the age of 65. Jans, not his real name, was the fourth person I interviewed in April 2015. Since he lived in a remote village in the east of the Netherlands, we met at a train station to …
This article is part of: Thinking with dementia → Daily life
The sun wakes her up. But Mrs Wijngaard keeps her eyes closed. She is 90 years old and sits quietly in her armchair in her apartment in the nursing home. And lets her thoughts wander. For three months she has been living here now, in an apartment with a living room, one bedroom, private bathroom and a kitchen corner. She …
This article is part of: Thinking with dementia → Daily life
The question of how Willem was coping, alone in the big house, had come to concern many of those surrounding him. Over the past couple of months, Willem had been tired, and was showing up at the drop-in centre less and less. His daughter had called on others to help him to prepare warm meals. He himself talked of his …
This article is part of: Thinking with dementia → Participation
Refraction of participation
What does it mean to participate? What does participation do?[1]
The etymology of ‘participation’ traces from the Latin word participationem, which translates as ‘sharing, partaking, make partaker of’.[2] The word is composed of the Latin pars (a part, piece, division), and the stem capere (to take). To participate is thus to take part.
We …
This article is part of: Thinking with dementia → Participation
Greenwoods is a neighbourhood in Nairobi, Kenya, dotted with diplomatic residences. At the time of my research on public-private assemblages of security provision and the reconfiguration of citizenship in Nairobi, Greenwoods’ residents association was sponsoring a security partnership between the state police and a private security company, Maximum Security.[1] The night patrol team of Maximum Security regularly hosted two …
This article is part of: Thinking with dementia → Participation
Warm haze
As I spoke, people looked at me worriedly. The kindness in their eyes was mixed with curiosity and concern. Rather than answering me, they turned to each other to discuss something beyond my grasp. I had aphasia and my incoherent stream of words was puzzling to the people around me. I spoke, I thought, in perfect sentences but …
This article is part of: Thinking with dementia → Participation
Lives change dramatically as dementia progresses. Using observations of people suffering from obsessions and compulsions, I will analyse this change along three dimensions.
Obsessive-Compulsive Disorder (OCD) is characterised by intrusive anxiety-provoking thoughts (obsessions) and rituals aimed at reducing anxiety, which then paradoxically come to exacerbate it (compulsions). I have been studying clinicians working with people who suffer from a severe, …
This article is part of: Thinking with dementia → Participation
According to her midwife Jana, Mira’s was a textbook birth: it was quite fast, even for a second birth, and proceeded without any complications. In reflecting on her attendance at Mira’s birth, which I had witnessed the day before, Jana emphasised that her task during birth is only to observe: “Observing, keeping an objective view, and recognising what the situation …
This article is part of: Thinking with dementia → Participation
Care worker Annika announces that she does not want to go to Mr Moran. “He always complains.” “I’ll go”, says her colleague Robin, and turning to me he says, “I don’t have the intern today so you can come along if you want to see for yourself how it goes”. We head off to assemble the materials for the morning …
This article is part of: Thinking with dementia → The stories continue
Much to our pleasure we got many positive responses following the publication of our series, ‘thinking with dementia’. Some of these responses suggested novel directions in which we could think with dementia. We asked the writers to extend their stories, and invited some more authors to contribute. And so the stories continue!
While much of the research that gave rise …
This article is part of: Thinking with dementia → The stories continue
I have never lost my childhood habit of beachcombing for special rocks and shells, and I think of ethnography as involving a similar process of collecting bits of evidence. Mostly what I collect are words (interviews, quotations, or notes) that I then use to make various kinds of word compositions (descriptions, analyses, arguments, and articles). But words do also have …
This article is part of: Thinking with dementia → The stories continue
History and dementia are both concerned with time. Writing history is all about folding time, making sense of things that have become confused and confusing with the passage of time by bringing different points into contact. And dementia, as the reflections in this series show, suggest different ways of experiencing and enacting time. These variations in dealing with time …
This article is part of: Thinking with dementia → The stories continue
“Are you free tomorrow?”
“Sure, what’s going on?”
“It’s a big day for Gramps! I’m taking him to the doctor. I guess someone from the ward office said he ought to be checked for dementia.”
I could tell Ken was trying to make a joke about this ‘big day,’ but as he started slowly walking past me, he leaned his …
This article is part of: Thinking with dementia → The stories continue
On a sunny, stifling afternoon, my friend, an Ayurvedic doctor, ushers me into a scantily furnished examining room of his clinic in central Kerala, South India. There, a small, stout woman sits on a chair. Her name is Mercy.1 She is wearing a salwar kameez, an outfit comprising of a long shirt, baggy pants and a scarf, rather …
This article is part of: Thinking with dementia → The stories continue
I remember when I was a lot younger and my grandmother was still alive, her flat became increasingly filled with small pieces of paper attached by tape to an apparently random collection of things. On each paper was written the name of the object it was stuck to; ‘toaster’, ‘cooker’, ‘sink’, ‘chair’ and so on. Over time, as she forgot …
This article is part of: Thinking with dementia → The stories continue
Like dementia, persistent pain comes with irreparable losses: physical restrictions, strained relationships, financial problems, perished dreams and ambitions. Both conditions require ethnographers and care professionals to shift focus from cure to care, from treating illnesses to learning how to live with restrictions. The question thus emerges: how do we learn to live with such ‘diseases that do not go away’ …
This article is part of: Thinking with dementia → The stories continue
Angela was angry—even now, when I listen to the audio recording, I can hear the bitterness in her voice. We sat in the conference room of the public library near her home, where we had met for a formal interview, and she detailed the reasons for her anger, starting right in even before I had turned on the recorder, such …
This article is part of: Thinking with dementia → The stories continue
One rainy morning in November, I called my mother.
“Hi mum, how’re you doing?”
“Well, it isn’t much fun to be sitting here in a chicken run all day long. They’ve even stretched the mesh right along the sideboard.”
I picture my mother, who had been immobile for years, seated in her blue-painted wicker chair next to the window. Within …