The Dementia Letter Project: Writing good futures with dementia

This post is from Annelieke Driessen, an Assistant Professor of Medical Anthropology at the London School of Hygiene and Tropical Medicine. Title illustration by Bettina Klein.

A fieldwork memory

On a Thursday afternoon in one of the three care homes in the Netherlands where I spent time doing my doctoral research, Mrs Steen and I took a walk around the building. The walk was exactly the distance that Mrs Steen had energy for. The sun was shining; we did not have to wear a coat on the only outing of her day.

Mrs Steen had only moved into the care home one week before. Earlier that day, she and I had sat at the breakfast table together. She was sliding her knife and fork back and forth across the table, back and forth, as if they were little boats. “You can leave those where they are”, her care worker said. The way Mrs Steen looked at me made me think that she felt she had been told off. She proceeded to tell me that her fellow residents were not friendly with her; that she had to “integrate”. She said it softly, whilst resuming to move her knife and fork across her placemat. If I heard right, she had used the contentious Dutch term inburgeren that is part of the political lingo that denotes a perceived responsibility of migrants to learn the Dutch language as well as the ways Dutch society presumably works, an idea that has been critiqued for placing the burden of settling into mainstream society onto the individual migrant. What I heard when Mrs Steen said this, then, was that it was up to her to do the work of ‘fitting in’. But I could not be sure that that is what she said, and meant. Mrs Steen often spoke softly, and sometimes this was read as ‘babbling’ by those who did not have enough time to sit around to hear other things she said that may help contextualise it.

However, on our walk around the building, she spoke clearly: she reiterated that she needed to integrate. She said that her life was not worth much now. As we walked, she scoffed: “You may as well put me out with the bins”.

Dementia imagined

I remember being deeply troubled by this conversation, and still am. Mrs Steen so clearly communicated her need to belong, to be included, to be valued, to be meaningful. Yet she felt that she was waste; that she may just as well be dropped off at the bulky waste collection point.

There were many such moments in which people with dementia verbalised or enacted their unhappiness, their suffering, their loss of self-esteem. This was not only an effect of their immediate physical circumstances, that stood in stark contrast with what their lives had previously been. It struck me that instead, this suffering was also informed by the connotations and ideas about what a life with dementia is, and, perhaps most importantly, what it is no longer. These are often pointed at through questions that inquire about ‘the stills’: “Does she still feed herself? … Still chew? … Still toilet? … Still dress up? … Still play the piano?”.

In a most moving essay about her mother, who at the time lived with dementia, American anthropologist Janelle Taylor reflects on why she is frequently asked whether her mother still recognises her. Janelle foregrounds that besides the negative stills, there are other stills too: her mother may not recognise her anymore, but – Janelle writes – “my mother “still” is in many ways the cheerful, affectionate person I have always known her to be”. Janelle then reverses the question people ask her: “When everyone keeps asking me ‘Does she recognize you?’ I believe the question really is—or should be— ‘Do you, do we, recognize her? Do we grant her recognition?’”.

This lack of recognition of people with dementia on the part of others is what characterises the way dementia is perceived, understood, framed and imagined. In the collective imagination of many societies around the globe, dementia is associated with loss, suffering and decline. It has no place in a future that is good.[1] In other words, positive imaginaries of what a good life with dementia may look like are lacking. This is not just a discursive problem, one that precludes us from thinking and speaking about dementia in positive terms; it is very much also a practical problem, one with real life consequences: when dementia is imagined to destroy lives and even selves, then a cure is posited as the only solution. Care is left to paper over the cracks.

When care work is not taken seriously in its potential to shape lives for the better, the dominant imaginary of life with dementia becomes a self-fulfilling prophecy: the chronic underfunding of care work and the lack of recognition for those who do the job are but one symptom of the pervasiveness of the idea that dementia makes life not worth living. Yet in doing so, care for people with dementia is stripped of precisely the resources and imagination needed to make lives with dementia better. Illustrative of this social and cultural undervaluation of the life of and care for people with dementia is that people living with dementia in care homes were both insufficiently protected from COVID-19, and simultaneously given a strict ban on visits  which largely reduced their lives to that deemed necessary for ‘survival’ – with devastating impacts for residents with dementia, their relatives and those who care for them professionally.

The point is, with no cure available to us, we need to learn to live with, and to live well with dementia.

And, as my morning walk with Mrs Steen taught me, the lack of positive imaginaries of dementia makes this very difficult: those living with dementia perceive themselves to be burden to others, in terms of lack and loss. Those who care for them may find their work unnecessarily hard to do, because different ways of engaging with dementia hardly come into view.

But dementia is not fate. One key lesson I took away from my year of research in residential care is that a dementia diagnosis does not have to mean a series of inevitable losses alone, although they will be part of the story. Dementia does not have to imply a life in which those with the condition are stripped of the competence to be part of decisions, their desires, or their self; of that which makes us human. Care practices can – and often do – help people with dementia to gain them.

Re-imagining dementia

Care work is fraught with everyday ethical dilemmas, and, more often than not, defined by lack of resources. Yet, rather than pointing to the situations in which care fails, I seek to learn from those often overlooked instances in which care creates possibilities for residents that are more than the dominant public imaginary projects for them. I then examine what allows for this to happen – and it is here, I suggest, that care work can be strengthened; from within everyday practices. I will give some examples.

In the care home, a physiotherapist and a care worker organised bi-weekly dance afternoons for residents, which even included the performance of a resident-DJ who played tunes from the large vinyl collection he kept in his room. Residents danced with volunteers and family members, who flocked to this event as it was something they felt contributed to the joy of their loved one, and indeed they took pleasure in it themselves. Enjoyment was key to these care practices: rather than giving in to the idea that a life with dementia is devoid of joy, these care professionals created the conditions in which residents could, as part of a dance, enjoy physical proximity (often scarce in care homes), enjoyable physical exercise (rather than straining exercises one ‘has to do’), and togetherness.

Importantly, enjoyment was not confined to special events, but was also used in what care workers call “activities of daily living”: essential everyday activities aimed at managing one’s basic needs such as hygiene, toileting or eating. Care worker Joani got Ms Veenstra up in the morning with a cup of hot chocolate, and some gentle sunlight. Occupational therapist Andrea promoted the use of music in the mornings – to help residents relax, or even ‘dance out of bed’. Care worker Bram arranged bathing sessions for individual residents: he washed their hair and brought them breakfast in bath – a welcome disruption of organisational routines, in which washing is a routine that residents often resist and dislike. Joani, Andrea, and Bram taught me that ‘everyday’, ‘essential’ and ‘basic’ care does not have to mean the obligatory physical care before the good things in life can happen – like family visits or dancing events – but can be made enjoyable in themselves. Moreover, this enjoyment can help to get these tasks done that, at least to some degree, are needed to keep well.

These kinds of practices, I insist, allow residents with dementia to become people who have a say about how their morning routine unfolds, people who enjoy activities, and people who – despite living in an institution that inevitably risks undoing their uniqueness – can, with some help, enact their individuality. The point, then, is that care can create possibilities of living well with dementia. Within limits, that is. Because none of this can negate the fact that living with dementia can be incredibly hard, for those who live with the condition, as well as those who care for them. But nothing is fully determined. And so there is hope, that a life with dementia does not necessarily equal a loss of self, a loss of joy, a loss of relationships. “Hope calls to action” writes Rebecca Solnit. Where there is hope, there is possibility. How lives with dementia unfold can be influenced; what emerges can be shifted, slightly but significantly.

We need to resist the dominance of negative imaginaries. In my thesis I do so by bringing care practices and what they make possible for people who will have to find ways to live with dementia into words, into view, and into awareness. I do so to make them available for learning, to help them travel to new settings where they can make a difference. But I believe the dominance of negative imaginaries would be best resisted on a more collective level.

It is a well-known feminist mantra that there is politics in the everyday – and therefore there is a promise, hope – and power! – in imagining things differently. Imagination can turn taken for granted things upside down; it can subvert and transcend what we (think we) know. What we need, then, is a commitment to identifying and making such alternatives, whilst also staying alert to what is at stake.

Re-scripting imaginaries

After my doctoral research I came across a book that consisted of a series of letters of authors to their younger selves. It made me wonder if writing letters to our future selves could help us to rescript imaginaries of dementia. Letters provide a format in which the writer is not restrained by academic conventions – introduction, rationale, aims and objectives, research question, method, findings, conclusions… Instead, a more fluid narrative can emerge whilst writing.

What is more, writing a letter to a possible future self with mental decline, rather than to somebody else in the present, moves us into the realm of fiction. In fiction we can be free from what is currently is and should be, and explore alternative futures and possibilities. And so, a collection of such speculative letters could open up ways of thinking about and, indeed, living, a good life with dementia, and therein contribute to realising them.

So I asked friends, colleagues, and acquaintances to try it out. They wrote their letters, some jubilant, some hesitant, some curious. When the letters arrived in my inbox they were accompanied by notes that writing them had brought to life many memories, questions, and even empathy for themselves.

These first letters already offer many fruitful alternatives to the dark and gloomy imaginary of dementia that life with the condition equals suffering, and inevitable loss: Ralf Jox’s letter begins with a playful struggle with who to write to: “Usually, when I start writing a letter, I try to imagine the receiver of the letter, … But here I already stumble: Who are you, the receiver of the letter?”  His query demonstrates curiosity about what his life with dementia would be like, a curiosity that is needed if we want to explore how anybody’s life with dementia may be made good, or at least as-good-as possible. Hannah Cowan, answered the query for herself by settling for a multiple addressee: “you, my friend, self, and other” – thereby foregrounding an experimentation with new ways of relating with herself in the future, and perhaps also people with dementia.  The letters also express hope: Melanie Lovatt expresses comfort in the idea that her addressee may “see the trees from your window, and hear the birds singing, and maybe even have a cat resting at your feet”. These hopes help articulate practical, material suggestions for care and support of what the writers value presently, and possibly will continue to value in later life.

And these are just a few examples of directions in which the letters may take us. The project is just beginning. The collection of letters is to be a collective effort of ‘thinking the future with dementia in’. Reading and compiling narratives is already used as practice to increase empathy.[2] My hope is that the letters can teach us all new ways to relate to people with dementia, and contribute to better lives with the conditions, in the future, and now.

*

P.S. If you would like to write a letter to yourself as part of this project, here is the invitation letter in which I explain how you may do so. I look forward to reading it.


[1] For this insight, I am indebted to Alison Kafer’s excellent book “Feminist, Queer, Crip”.

[2] See for an account of the use of narratives in teaching empathy to medical students, Paula McDonald and colleagues 2015.

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