A new book, Creative Approaches in Dementia Care, has been released by Palgrave Macmillan. Edited by Hilary Lee (President of Dementia Care Australia) and Trevor Adams (University of Surrey, U.K.), this book contains a dozen chapters describing the use of art, music, laughter, storytelling, end-of-life engagement and several other avenues to enhance the well-being of people living with dementia.
I was honored to be asked to write the foreword for this book. With Hilary’s permission, I am printing it here, as a way of promoting this fine new publication:
‘There is no use trying,’ said Alice. ‘One can’t believe impossible things.’ ‘I daresay you haven’t had much practice,’ said the Queen. ‘When I was your age, I always did it for half an hour a day. Why, sometimes I’ve believed as many as six impossible things before breakfast.’ — Lewis Carroll, Through the Looking Glass
What is creativity? Photographer Dewitt Jones (1999) defines it as ‘a moment – a moment where we look at the ordinary, but see the extraordinary.’ This simple definition describes what is so important about this book.
Our traditional view of dementia is one that focuses on loss – loss of nerve cells, memory and impairments in various types of cognition. We constantly measure people living with dementia by what they cannot do. Standardized assessments like the Folstein Mini-Mental Status Exam are a litany of discrete tasks to be performed: Can you spell ‘world’ backwards? Can you remember three objects after five minutes? Can you copy a figure of two intersecting pentagons?
In performing these assessments, we reduce the person to the sum of those discrete tasks. This distracts us from the fact that many complex and integrative skills continue to exist, even in advanced forms of the illness. Our focus on disease and deficits blinds us to seeing the whole person. This biased view – referred to by Kitwood (1997) as ‘positioning’ – leads us to respond to expressions of distress or need by blaming neuropathology, rather than looking into the heart of the person in our care.
In our biomedical approach to dementia, we have created care environments around the needs of well care-partners, rather than those of the person living with dementia. In explaining the fallacy of this approach, I often ask audiences to think of a man whose legs have become paralysed, who now needs a wheelchair for mobility. Through tireless advocacy, new laws have been enacted requiring building owners to construct ramps and other types of disability access, in order to enable such a person to continue to succeed in our world.
But we don’t build ‘ramps’ for people with dementia. We create environments where they can no longer succeed, and blame the resultant distress on their ‘disease’. Imagine pushing the man I just described out of his wheelchair and exhorting him to ‘walk as we do’. Next, imagine that after he falls to the ground and becomes angry with us, we diagnose a ‘behaviour problem’ and give him a sedating medication. It sounds ludicrous, but we do this every day to people who live with dementia, in all care environments around the world.
In crafting a new ‘experiential’ view of dementia that enables engagement and growth, I use a simple definition: Dementia is ‘a shift in the person’s perception of the world’, (Power, 2010). By moving our focus from disease to shifting experience, it is possible to see the whole person and conceive of new approaches to care that reflect and capitalize upon how that individual sees the world.
Once we have re-framed our view of dementia and shifted our focus from disability to possibility, it is easier to see the intersection of creativity with dementia. In fact, Jones’ definition of creativity seems to embrace the very core experience of the person living with dementia: looking at the ordinary, but seeing the extraordinary. Instead of simply viewing such a shift as evidence of confused pathology, is it possible to channel this perspective through creative expression and enhance one’s well-being as a result? This book answers that question with a resounding ‘Yes!’
The first lesson for creativity is that it is a trait we all possess. The ability to see the world around us with ‘new eyes’ exists in every person, each according to his or her perspective. This ability does not end with a diagnosis of dementia; in fact, the mind’s detachment from ordinary patterns of thinking may actually enhance one’s ability to untether the creative spirit.
And that is also what creativity is – a spirit that is ignited when the mind is fully engaged in the genesis of new thoughts. There is an inherent joy in beholding something that you have conceived in your own way. That is why a songwriter can perform the same repertoire night after night without becoming bored. Each performance is a rediscovery of the creative process, magnified by the energy felt when those around you share your creation.
Another lesson is that creativity transcends language. The loss of speech that can occur with dementia is not a barrier to ongoing creativity. On the contrary, disrupted patterns of speech can create new words, ‘neologisms’ that express multiple meanings and emotions in novel ways. ‘Twas brillig and the slithy toves did gyre and gimble in the wabe…’ When Carroll wrote this, we called it genius; when people with dementia speak this way, we call it nonsense.
Furthermore, engaging the creative arts can activate pathways that release thoughts and words previously held captive by broken circuitry. There are millions of ‘back doors’ to communication that can be opened with a non-traditional approach, be it art, music, visual stimulus, tactile sensation, humour, or strong emotion. This book abounds with stories of such successes.
Many of us are hampered by our own paradigms – it is the individual who can break free of these established patterns of thought and find new discoveries. In his 1942 novel Pilote de Guerre, Antoine de St. Exupery wrote, ‘A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral.’ When the mind is freed of mundane thought patterns, there are new worlds to discover. We can learn much about imagination from people who live with dementia.
Perhaps the most important lesson of creativity is that it exists in the moment. A learned scholar or accomplished artist may read past writings, work through complex formulae or practice her art, but when the creative spark hits, it triggers a process that unfolds in the mindfulness of present.
Once again, dementia can provide the perfect palette for painting the creative landscape. Unfettered from the weight of memory, people living with dementia exist more and more in the present moment. As memory dims and reminiscence becomes less durable, engagement in the moment is often the best approach to creating well-being.
In the creative moment, there are no rules and regulations. There is no ‘right answer’. There is not even a need to be right, because every next moment promises another opportunity for renewal. People living with dementia also teach us about mindfulness.
One last lesson about creativity is that it contradicts the common wisdom about ‘limited brain reserve’. Just as the letters of the alphabet can be displayed in infinite variety, so can our range of creative expression. In this way, the creative process is like a muscle – it becomes more powerful and versatile with repeated use.
Recent research has brought to question our long-held medical beliefs that ‘nerve cells don’t regenerate’ and ‘brain damage is permanent’. Kitwood (1997) coined the term ‘rementing’ for his theory that a nourishing care environment can create new brain growth and capabilities, even in the face of advanced dementia. This concept was met with a great deal of skepticism then; it doesn’t seem so impossible now.
Indeed, people living with dementia are learning every day, incorporating names, places, and many of the positive and negative experiences of their daily life and care. We tend not to see this because we focus on deficits, but what if our focus shifted to cultivating strengths through creative engagement? What often results is nothing less than a virtual ‘reversal’ of many of those deficits associated with dementia. Here’s why: There are two disabilities of dementia. The first is a result of damage to brain cells, which at present remains irreversible. But there is another hidden disability: the excess disability caused by a care approach that positions, disempowers, isolates and overmedicates the person. Creative engagement enables us to remove much of this excess disability, and people come to life with new abilities thought to be long lost to their illness. The following chapters on the Spark of Life approach and a multitude of other creative endeavours will demonstrate the frequency and durability of these ‘awakenings’.
In a 2005 monograph, Fox et al. described seven domains of well-being: identity, growth, autonomy, security, connectedness, meaning, and joy. In addition to being universal across ages and cultures, these domains can also exist independent of one’s cognitive or functional abilities, if they are recognized and cultivated by the care environment.
As you read the following chapters, it will become strikingly apparent that well-facilitated engagement through the creative arts can feed all seven domains of well-being simultaneously, reigniting one’s spirit even in the latter stages of dementia. If I could create a pill that did this, I would likely be a Nobel laureate and a very rich man. But I will wager that such a pill will never exist, as neither creativity nor well-being can be bottled.
Before you turn the page, I will offer one last quote (from Sheik Ahmed Zaki Yamani) about creativity and possibility, to enhance your journey:
‘The Stone Age didn’t end because they ran out of stones.’