Do we genuinely recognise them? An Intimate Mini-Ethnography of People with Dementia in London
By Wange Li
In the summer of 2022, I participated in a volunteering programme at the Museum of London Docklands. The programme is called 'Memories of London' and aims to help elderly Londoners with dementia recapture their youth through a series of activities in the museum. I reflected for the first time on discourses of ‘memory’, ‘recognition’, and ‘personhood’, gradually becoming aware that the correlation between these was in fact artificially constructed and cannot be taken for granted. It was also through close encounters with elderly people with dementia that I saw their vivid but little-known vitality as well as their deep bonds with London and their loved ones.
Museum artefacts and collections that we used during the events
One day some months ago, I walked into one of the activity rooms at the Museum of London Docklands. The room was a bit noisy, with a crowd of people standing, sitting, or even lying on the floor. I could not tell what they were doing for a while, making me wonder if I had come to the right place.
"Ah! There you are at last. Come on in, we'll be starting soon" Seiwa, the manager, greeted me enthusiastically and seemed compelled to show me the exciting things that were about to happen.
As I took my seat, I saw David sitting beside his son (the carer) looking quite nervous. David had been talking to me so eloquently the last time we met, but this time in the middle of a group of his peers, he was somewhat tempted to join in the conversation of others but was seemingly too shy to step forward. Meanwhile his son was climbing into conversation with the carer of another elderly, making David look even more lonesome. Suddenly, he saw me sitting right across from him. His eyes lit up and he waved at me like a child. Although surprised that he recognised me at once (or maybe not but was just sending out a "help" signal), I immediately dropped the things at hand and made my way to him.
I crouched down, shook hands with David and asked him how he was doing. I did not ask him if he remembered me, as Seiwa had repeatedly stressed back on the first day of the training not to ask such questions, which could be offensive to people with dementia. That was the first time I began to reflect on the question "Do you recognise me?", which many people, including me at the time, took for granted when referring to dementia: not only was it disrespectful to the individual, but it was problematic in a broader sense, as the question itself was imbued with social and ethical judgements which should not simply be relegated to personal manners or expressing sympathetic concerns.
According to the CDC definition, dementia is a general term for impairment of memory, thinking or decision-making skills that affects the ability to perform everyday activities. One of the most important criteria for judging dementia is memory loss, which in turn relates to concepts such as 'personhood' and 'caring' in the discourse of medical anthropology (Zhu 2021: 176). When individuals no longer have a sense of who they are and are unable to maintain their social relations effectively due to memory loss, their sociality is seriously threatened and constitutes a kind of 'social death'- the body may continue to live, but the person is actually gone, no longer present and no longer a person. The philosopher Paul Ricoeur’s three semantic clusters in his book The Course of Recognition (2005) are of particular explanatory power here. According to his model, people with dementia usually go through three key stages to complete the transition from active to passive status. They begin as a sovereign self, capable of identifying external objects, gradually lose this ability and begin to suffer judgement from the outside world, and finally reach a point where they are passively recognised by others as an incomplete person.
But what is the nature of this obligation to remember and recognise if we owe it to ourselves in order to qualify for complete personhood? Underlying this perception is the profound western presupposition that human beings, as subjects of personhood, should be autonomous and capable of recognising their own social relations; the idea is also deeply rooted in historical development. Since the Enlightenment, memory has been considered a manifestation of the mind and, as such, memory impairment has been seen as a great challenge to the integrity of the human person (Cohen 2008: 336). In an era where such assumptions are the dominant standard of ‘personhood’ in the West, it is clear that people with dementia cannot be reconciled with this institutionalised model of cultural and ethical values. Moreover, since the 20th century flourishing of cognitive and brain neuroscience, the medicalisation of memory has stimulated processes of deconstruction and reconstruction, that the implications of which has been that the deconstruction of human subjectivity has also completed the construction of illness (Zhu 2021: 177). Once a person is diagnosed with dementia, the label of this disease term overrides the subjectivity of the person themselves, and the bystander's view of the person is henceforth dominated by the label, deepening the understanding and inherent impression of the disease in one encounter after another.
A society's understanding of illness has a direct impact on the form of care and attention applied to the patient. Euro-American values of individualism have long held personal autonomy as an important criterion for identifying the integrity of the person, and the rise of modern biomedical discourse has further de-socialised illness by placing its roots and treatment squarely in the human brain. However, this focus on individuality should not be the only way to define personhood; rather, its perception should be pluralistic and in various states of tension. It is through ethnographic field research that anthropologists have been able to critique dominant but narrowly defined individualistic values and point to alternative possibilities and interpretations for understanding people with dementia, namely that memory loss does not imply a loss of freedom and self. Instead, a new type of self-knowledge may develop when a person enters a state of 'relatedness' and dependence on others, rather than being reduced to being merely a passive, cared-for object.
A random chat before the day starts
After exchanging pleasantries for a while, Seiwa gestured for everyone to return to their seats. As the day began, I realised why she had just seemed so mysteriously excited and understood why so many older people were joining us today - we were going to have a wedding, and David would be the ‘groom’ for the day. I started to wonder who the 'bride' was going to be, and the answer soon emerged - it was the mother of the lady who had chatted with David's son earlier. No wonder David's son was 'ignoring' his father and talking to other people, and no wonder David seemed so nervous. It all made sense now.
The wedding was on. Although it was not a real wedding, we basically had everything and everyone needed for a real one. One of David's friends was invited to play the priest, a few other programme participants played best man and bridesmaid, and the rest of us played guests. Suddenly, I heard one of them start humming a song that resembled a wedding march. As more and more people joined in, the song became louder and louder and even began to shake the hearts of people like me who were not very familiar with European wedding customs. I saw a few older men, who were a little frazzled at first, whose mouths began to unconsciously match the call of the song. The sound came from their throats, vicissitudes and gradual brightening, and their faces flushed as if they had sung it hundreds or thousands of times until the song had long since become part of their bodies.
I saw the shy smiles on David's face, the “demented” old men who sang earnestly, and the many twilight souls still burning. I saw a living 'body of experience', as opposed to the 'body of diagnosis' I had seen in books and clinics. Modern biomedicine is so concerned with the latter that it ignores the patient's true self and needs; here, even without their words, I could see their needs being fully met; also here, the normative power relationship between carers and the elderly has been completely subverted. In the clinic and in everyday life, caregivers have always played the role of advocates, holding the channels of external communication for their patients, often giving the false impression that they are the true advocates for the latter. But how can this be the case?
Here at the museum, we listen carefully to the voices and demands of the elderly and encourage them to actively express themselves in a variety of ways, while the carer becomes a supportive role and we are no longer guided by their opinions solely. If we free our perception of ' recognition’ from a single cognitive domain to experience the process of communication, participation and practice, we can appreciate the many other ways in which their capacity to be a person is made tangible. And it is through all of this that we see more possibilities in people with dementia.
Preparing for the wedding
The original intention of the “Memories of London” programme was to bring back the brain memories of the elderly with dementia through a series of activities and objects, but it was clear that the effect was rather modest, in the sense that most of the people did not have those entirely back. Nevertheless, does this mean that the programme has failed? I - and the vast majority of participants - think not. Perhaps it was just that the programme was initially designed with some reservations or over-optimism in mind, and we gradually discovered this over the course of the sessions – even if they don't remember, so what? And, had they really forgotten their past?
An increasing number of scholars have begun to question conventional definitions of personhood since the 1990s, arguing that personhood should not be seen as a possession owned by individuals, but rather as an intersubjective state of mutual recognition, respect and communication. Thus, even if a person no longer possesses his or her former memories, so what? The correlation between loss of personhood and the loss of memory is not natural but always socially constructed, and only with such an understanding, a fundamental change in the assessment of people with dementia and the corresponding care system can be truly ushered in; at the same time, this wave has led to a broader reflection on other more subtle concepts such as 'recognition' at the level of cultural practices.
Recognition can be understood not only as an internal emotional or intellectual state of the individual, but also as a social, very concrete and material form of practice and activity (Taylor 2008: 326). Being able to remember others is only one of these activities, as there are countless other forms of knowing how to interact with people: the elderly with dementia in our programme may not all be able to speak coherently, but they are capable of participating in and enjoying activities such as dancing, singing, roleplaying, etc., which all rely on their embodied procedural memory (Taylor 2008: 328). They may not be able to remember and recognise things cognitively, but their bodies respond vividly, testifying to their viability and the fact that they are far from having lost personhood and, consequently, the status of social death. Having said this, are we still unable to overcome the idea that cognition is the defining carrier of personhood?
Regarding the loss of cognitive memory as the signal of one’s incompleteness and social death is thereby a huge ignorance of what it means to be a person. Memory in the brain is never the most important thing. Its presence or absence does not and should not fully define who we are; rather, every word we have said, every interaction we have had with others, every smile or cry we have had, these too are a large part of who we are. As memory can be expressed on and through the body, corporeality also matters. Even when our minds fail us, the great embodiment of habit remains deeply rooted and functional within (Katz 2013: 311).
Looking back on the whole journey of the 3-month programme, we may not be able to bring back cognitive memories of the people with dementia, but they at least gained joy and respect and a full experience of the present moment, and we in turn gained a more intimate and comprehensive understanding of them. These are already quite enough; from now onwards, as Taylor suggests (2008: 315), perhaps a better and more worthwhile question to ask, rather than "do you recognise me" or "do they recognise us" could be: do we genuinely recognise them?
References
Centers for Disease Control and Prevention (2019). Alzheimer’s Disease and Healthy Aging - What Is Dementia? [online] www.cdc.gov. Available at: https://www.cdc.gov/aging/dementia/index.html#:~:text=Dementia%20is%20not%20a%20specific.
Cohen, L. (2008). Politics of Care: Commentary on Janelle S. Taylor, ‘On Recognition, Caring, and Dementia’. Medical Anthropology Quarterly, 22(4), pp.336–339. doi:https://doi.org/10.1111/j.1548-1387.2008.00037.x.
Katz, S. (2013). Dementia, personhood and embodiment: What can we learn from the medieval history of memory? Dementia, 12(3), pp.303–314. doi:https://doi.org/10.1177/1471301213476505.
Ricœur, P. (2005). The Course of Recognition. Cambridge, Mass.: Harvard University Press.
Taylor, J.S. (2008). On Recognition, Caring, and Dementia. Medical Anthropology Quarterly, 22(4), pp.313–335. doi:https://doi.org/10.1111/j.1548-1387.2008.00036.x.
Zhu, J. (2021). Yixue renleixue shierlun [Twelve Essays on Medical Anthropology]. Shanghai: Shanghai Education Publishing House, pp.176–192.