‘I Am Who I Am’: Preserving Identity in Dementia
What frightens us most about dementia? What is it that makes it so painful, both for those living with it and for those who care for them? The situation is such that countless answers could be given. But here is something that is not easily overlooked: the feeling of not belonging anywhere, of losing your speech and your language, of existing while not knowing who you are.
We sometimes hear people living with dementia say: “What am I doing here?” And we watch them wander, searching for something — for what? They don’t know. At other times we observe that look of deep confusion in those living with advanced dementia. And then that great difficulty in saying “I.” The first person singular is not a given.
Psychologists speak of something called the sense of identity — the awareness that we constitute a separate and distinct existence. Lacanian theory holds that this sense of “I” is formed through what is known as the Mirror Stage: at a certain point the infant discovers its image in the mirror and identifies with it — something that does not, for example, happen with animals. This discovery allows the child to say, throughout the rest of their life, “I am I and you are you.” It is an experience that gives a first sense of self, through identification with our own reflected image.
In the advanced stages of Alzheimer’s-type dementia, beyond memory loss — which is painful enough on its own — what the disease attacks is identity itself. As if, together with memory, the representations we hold of ourselves are also erased: the narrative of our life.
The form of memory related to the recollections of each person’s personal life is called “autobiographical.” These are memories stored from the earliest age, and they lie at the foundation of each person’s sense of identity. They are the mental images that allow us to travel through our subjective time, sometimes so vividly that we mentally relive entire scenes from our lives.
When autobiographical memory is damaged, the sense of continuity of self does not remain unaffected. The degeneration of nerve cells brings many changes to the patient’s relationship with all those representations that allow the sense of identity to be maintained. And as the representations of the self become confused and lost, in those moments we describe as disorientation and confusion, for the person living with dementia these are moments of genuine anguish, of intense and piercing anxiety.
TWO SMALL VIGNETTES
In care settings, we sometimes encounter a person who insists her handbag has been stolen at a village festival. She had left it on a chair beside her when she got up to dance, and now it is gone — with everything inside it. Have you seen it? Do you know where it might be? Who can she call? She needs it found immediately. Without it, she has nothing.
Another resident has found his own way of managing the question of identity. Each morning when he wakes, he opens the drawer beside his bedside table and carefully removes a small packet of laminated cards. Not just any cards. They are all documents that certify some form of identity: his most recent national ID card; an older identity card from the years of the Kingdom of Greece; a 1960 driving licence granting access to a large construction site in Thessaly. He carries this little packet with him always, in the left breast pocket of his shirt, over his heart. Some mornings he is late to the group activities at the facility where he lives because he must first arrange his cards in the right pocket, in the right order. To the rest of the world, they are just cards. To him, they are the landmarks of a 92-year life. He is all of his identities at once.
THE CAREGIVER AS COMPASS
How, then, can a person’s identity be preserved — that inner sense of existence — at the moment when the capacity for self-representation begins to fail?
Through his own inventiveness, the resident with the cards has found his entirely personal way of managing memory loss: his small daily ritual allows him not merely to remember, but to regularly confirm not only who he is, but also certain central chapters of his story.
In the case of the woman searching for her handbag, what has been stolen — what she searches for so desperately — is not a random object. It is something that performs an identity function. Vogue’s well-known video series “In the Bag” made exactly this point: celebrities reintroduce themselves to their audience by showing what is inside their bags. As if to say: show me what’s in your bag and I’ll tell you who you are. To feel that you have lost your handbag may be a translation of feeling lost yourself.
What can we do about this? How can the generalised personal disorganisation that dementia so often brings be prevented? Two things a caregiver can draw on:
A. The power of the name
Our name is among the first things with which we identify. Regularly addressing a person living with dementia by their name is a way of validating that most fundamental identification. Through this naming, and through the grounding function of touch and physical presence, the caregiver immediately gives substance to the person who is in confusion.
Within a care setting, this work can become even richer when it involves a third person: “Good morning, Mrs. So-and-so, I’m here with Mr. So-and-so and we’re taking a walk down the corridor.” We will then notice, very often, people living with dementia whom we assumed had forgotten even their own names introducing themselves politely to one another.
B. The power of the image
If the “I” is first constructed through the mirror image, then that same image can contribute to maintaining the sense of self. Mirrors in the rooms of people living with dementia should not be avoided — on the contrary, they should always be available, with caregivers encouraging their use, always according to individual circumstances.
Activities involving photographs of the person — such as looking through family albums — are considered highly effective for people living with dementia, and it is worth noting that these activities engage both functions at once: image and name together.
All of these are small ideas and suggestions for how we might offer psychological care, proposals tried and tested within a care setting. Most of the time, however, people living with dementia are already fighting on their own to preserve a sense of identity. Already on their own they are finding ways to manage that “I” which keeps fading, and the great anxiety that accompanies such a loss. If we want to play a small part in that struggle, all we need to do is listen.
