Dementia and the Sense of Self
Sarah Burge
All serious illnesses involve some level of adaptation to new limitations that arise from the disease, but few change who you are at your core, what you know and how you live. To quote Terry Pratchett, author and sufferer of early-onset Alzheimer’s Disease: ‘You can’t battle it, you can’t be a plucky survivor. It steals you from yourself.’ 2
Collating all of the studies I read through, a picture begins to form of a gradual progression – the initial desire and attempts to hold on to the pre-dementia self (or selves), followed by inevitable adaptions and changes leading to new selves, perceived to be lesser than the former, with reduction in memory and ability eventually leading to an unrecognisable and totally disconnected new identity.
Another issue also arises from social instability: the social environment in which the Alzheimer’s sufferer operates, is surely also responsible for the maintenance of the patient’s sense of self. When memory fades and personal narrative is unreachable, others, with their memories, instructions, expectations and reactions, are the principle informants of the behaviours and emotions experienced by the patient that piece together their social self. Family and close friends can help remind dementia patients of their past, recreate familiar situations, be more effective in consoling and reassuring. Without this support, I would imagine that descent into an unrecognisable self would be faster and more pronounced.
Keeping in mind the idea of the direct impact of dementia on the sense of self, and the role of the family in helping ease the impact, I created a portrait of a dementia sufferer. Blacking out the canvas first, I then stuck on assorted pieces of photographs representing fragments of memories jumbled up and difficult to recognise. On top of this, I created a portrait in white – representing blankness, space, but also the potential to be changed, to adapt. The portrait is purposefully ambiguous in gender and many features are difficult to make out clearly. The style of the painting also blocks out the majority of the ‘memory’ photos. This puts the viewer into the role of a dementia patient looking into a mirror: some parts of memories shine through, but most are unclear, and parts of themselves are unrecognisable. It is unclear whether the memories behind the person are a part of forming the person, or are being blocked by the person.
Looking back at the quote with which begins this reflection, I am left with a fuller understanding of Alice’s meaning. A dementia-suffering ‘self’ might not be the same as what a person was before, but it doesn’t mean they are less; it is simply up to those around them to help them find a new sense of self, and recognise their value.
References
1.Genova L. Still Alice 2009
2.Pratchett T. ‘A butt of my own jokes’: Terry Pratchett on the disease that finally claimed him – The Guardian [cited 10 April 2016]. Available from: http://www.theguardian.com/books/2015/mar/15/a-butt-of-my-own-jokes-terry-pratchett-on-the-disease-that-finally-claimed-him
prize nomination
For me the blurred lines around the face depict the lack of clarity between reality and the person’s perception of time. I feel it is important that while the ‘memory’ photos have been blocked out they are still there, which shows the fullness of the life the person has led. This is a fact that can sometimes be distorted by the people around a person with dementia, as their condition deteriorates it is easy to see someone as an illness rather than an individual person with a history and a story. The clarity of the eyes could show that although the person has dementia they can still experiences moments of understanding and remembrance.
I think this painting is a very insightful and thought provoking representation of the effects that dementia has on an individual’s sense of memory, familiarity and personality. The contrasting colours of black and white reflect the struggle between the known and unknown parts of one’s sense of self, with the white/blank areas demonstrating the areas that need ‘filling in’ or completing, perhaps with the help of family members and friends. This painting is visually effective as the smudging and blending of the monochrome shades displays the warped and lost feeling that patients may experience. This creates a feeling of compassion from the observer as one can begin to appreciate how confused and vulnerable the individual may be feeling when all sense of self and familiarity with your own life is distorted. In the painting, the portrait of the human individual is warped and distorted by the brush strokes, reflecting how the patient feels as though their human image is being distorted by the uncertainty of their past memories and present situation. The lack of identifying features of the individual captured by the painting reinforces the lack of sense of self that the patient feels and reflects the emptiness the person may feel due to the uncertainty surrounding their own character.
I absolutely love this piece! Its evident that so much thought has been put into this and its amazing how much detail this work holds. The bright white face in the center is like emerging from the darkness of oblivion, yet the messy brush strokes and blotches of black over it depict a hazy boundary between reality and forgetfulness. The pieces of photographs underneath representing the person’s past and memories was a brilliant idea as well; it has a big impact on making us realize the life they’ve lived and come from which they themselves cant recognise anymore, and how it falls on the people around them to help them cope with it all and remember once again.
My initial reaction to this image was to recall the Surrealist art movement. Many Surrealists used optical illusions to compose images so that, in effect, the viewer gets two works of art in one. When I look at the image of the painting, I see the face of a man who can be taken as a product of miscellaneous parts or as a whole work. After reading the artist’s description of her work, I was able to deepen this initial analysis. The opening quote confirms the idea that humans are more than the parts that make us up, i.e. memories or actions, we are essentially and metaphysically whole human beings regardless of what society would interpret to be “broken” or “missing.” The artist explains how she intentionally made the composition of the figure ambiguous. As the viewer, I interpret the white blurs as motion; the figure’s “memories” are in constant flux and the clarity varies, yet the figure is constant and thus independent of these memories. The artist did a beautiful job of portraying this message through her artwork in an accessible way.
I think this piece is incredible – the message that this piece aims to convey (as described by the artists reflection of the piece) is very much spoken through the piece itself without even hearing the artists thoughts. One of my favourite aspects of the painting is the creation of the dark clouds obscuring the face/identity of the individual – to me these are incredibly symbolic, especially the way they interact with the photographs included (again a brilliant idea); the colour of the clouds themselves I feel represents the psychological impact this clouding of memory has, and the interaction with the images to produce strange shapes and fragments seems to convey the confusion dementia may cause. The face shining through the clouds to me also very closely represents some of my most valuable memories as a dementia care assistant, the times where the identity of the individual shines through – often when there is a sense of social stability as very aptly described by the artist. On the whole to reiterate I think this is a brilliant and highly evocative piece of work.
The painting conveys the artist’s message in an ironically clear manner; it illustrates the gradual loss of a coherent sense of self thought the use of blurred details surrounding and overlapping the ambiguous face. Due to the fact that a person is clearly visible beneath the fog, but clearly obscured, the nature of the degeneration of the brain and memory associated with dementia is illuminated. The darkness surrounding the the face evokes the ever-advancing loss of memory, function and sense of self that dementia sufferers face.
This piece epitomises dementia: the blurred brush strokes, the murky monochrome, those vacant eyes searching for who they once were. There are details of the person in the painting which are shrouded in messier brush strokes conveying how memories and therefore the individual themselves are clouded and blurred, erased. The eyes to me are especially powerful. There seems to be a lost sadness to them as if the person does not quite know why they’re sad. They are confused and lost without their memories intact. It is hard to tell whether the darkness around them is closing in or whether they themselves are fading, perhaps both. This ambiguity shows both how isolating the disease is and how it erases the self.