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 with her, with many long pauses. We were basically ‘lounging’ through an afternoon, sitting at her favourite spot near the window. She switched from telling me that she was getting married, to having to look after her two kids, to being a child again. Most of the women in the nursing home where I did my fieldwork wanted to be called by their maiden name, even though the staff would call them by their married name, to which they would also respond.
This time travel is generally interpreted as disorientation. But it is more to the point to call it being alternatively or diversely oriented, since once within a particular time-space frame, everything makes sense from that particular frame. When Mrs B. had to take care of the kids, this was how it was, and she was not to be stopped. Responses such as “But your kids are old, it is 2017, the only home you have is the one you are in now” made no sense, and disqualified Mrs B., the speaker. In the nursing home, the residents would always claim that the others were the crazy ones; visitors seemed to miss the – for the speaker – very obvious point of who was who, where they were and what they were doing. To the residents, the world made perfect sense, even if it wasn’t always to their liking. And often enough, visitors or fellow residents who contradicted their world were labelled as liars.
The sensation of time travelling also occurred on a micro level, when things and people were forgotten from one moment to the next. Once Mrs F. wanted to do something about the dry plants she discovered in the living room of the nursing home. “Great!” I thought “Initiative should be rewarded!” The spirit of the day was staying active and doing what you can for yourself and doing meaningful things for others, so as not to simply doze by the window like Mrs B. With great enthusiasm, I went on the hunt for a watering can. This was not so easy, as there were few objects in the Spartan room. Fall prevention! With some effort I found a watering can in a locked closet that a nurse had to open for me. When I ran back to proudly present my find to Mrs F., she said to me with a good sense of theatre:
“Oh dear, are you going to water me?” Yes, well, where to start explaining? I tried to accept being the fool with the watering can with some grace.
So how to speak with these time travellers? It is often not so clear where people are in time and space. It takes quite some effort to find out who is alive, at what age, and so on. No less is at stake than the very facts of the situation. I observed three possibilities for relating different realities, or different time-space coherences.
The first is to try to get people into ‘our’ commonsense time and space: “It is June 19, and I am preparing for the workshop next week, and I know more or less who will be there”. This is a useless strategy for people who lack short-term memory, and who live in some more or less distant past. They cannot adapt to the new time, unless they are still in an early stage of dementia. “Sorry, but what you are saying does not make sense. And could you please get out of my way, as I am wanted at home.” (This is the polite version.) Apart from these pragmatic hazards, fighting about facts does not seem to be the most interesting and useful thing to do.
The more romantic second way is to try to follow the person with dementia to her timeframe. This is difficult, because you are often unsure of where people are; and, if you do know, you probably do not know the issues that were important to them then. Present time reality might kick in harshly when, say, the home is found, with other people living in it. Still, it is a possible strategy to engage in a conversation; to play along and join the quest to go home.
The third option is to try to find a common world, to invent a reality that can be valid and meaningful for both. I suggest that this would mean centring on the here-and-now. This is not as easy as it sounds, because this here-and-now has a particular horizon as well. The starting point is maybe not a conversation, but a sensation. There is a lot of communication in the nursing home through holding hands or supporting arms. Physical contact is a way to create a shared world through something that is felt. Touching creates a presence. If I feel the other, she must be there.
Conversations can also be about things felt in the here-and-now. For instance, speaking about the children or the partner of Mrs B. can take the shape of making them present, of speaking about who they are and why they are so likeable or difficult. It is, so to speak, a more general conversation that does not need a specific anchoring in time: the daughter is always fond of herring, and it doesn’t matter if the mother thinks of her as 20 or 40 years old. General talks like this evoke and perform a shared understanding in the here-and-now. The ‘now’ created is both the time-space you are physically in, as well as any other time-space that can be made to fit the objects and people around.
For a person without dementia, tinkering with the timeframe is maybe more difficult. It is a lot easier to speak with a person with dementia in a nice way if you did not know the person from before. Since if you did know them previously, you would constantly be searching for the person you once knew, and the comparison would always be negative for the person you meet in the here-and-now. The horizon you look for has to bracket the past as far as it (negatively) interferes with the conversation you are trying to have. The person with dementia has to be allowed to exist with just enough future and just enough past to suggest interesting topics to speak or muse about. Home is where the heart is, and an apple a day keeps the doctor away.
In the nursing home, I learnt that these very localised conversations that are simultaneously so decontextualised in style can be about a myriad of topics: about the weather, about food, about nice dresses, about good things to do. They are localised in the here-and-now, but the speech is also about general things that are not necessarily tied up with the here and now. A philosophical repertoire, you could say: it shows a certain wisdom about the world.
But even if the content takes the form of wisdom, a chat is usually more about communication, about sharing things and being together. Relating for the sake of relating, not for exchanging content.
Jeannette Pols is appointed as Socrates professor ‘Social Theory, Humanism and Materialities’ at the Department of Anthropology, program ‘Health, Care and the Body’, at the University of Amsterdam. She is Associate Professor and Principal investigator at the section of Medical Ethics of the Academic Medical Centre in Amsterdam. In 2017 Pols was appointed as a member of the Advisory Board for the Government on health care: RVS (Raad voor Volksgezondheid & Samenleving). The core of Pols’ research is empirical ethics, which studies ‘normativity in practice’. She formulated three research lines for the Socrates chair, to which she was appointed in 2012: 1) the analysis of ethical and aesthetic values in sociomaterial care practices; 2) the articulation of actual and preferable subject positions of people with chronic disease and other technology users; and 3) conceptualizing practical knowledge of patients and their carergivers.