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The Column icon The Column: Issue 34

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The Column is a monthly feature that explores the world of creativity and aesthetics.

Dementia and Creativity
Mike de Sousa, Director, AbleStable

Dementia is the name given to symptoms of confusion and memory loss which result from many conditions which effect and gradually destroy the brain, the most common being Alzheimer's. Dementia is not a disease in itself. Many of those who have, or are close to someone with dementia, experience a journey into darkness with little that is positive to offset their sense of profound loss. There is however one area of hope that is a powerful force that transforms the perception and experience of those with dementia: the phoenix of creativity.

Pray, do not mock me:
I am a very foolish fond old man,
Fourscore and upward, not an hour more nor less;
And, to deal plainly,
I fear I am not in my perfect mind.
Methinks I should know you, and know this man;
Yet I am doubtful for I am mainly ignorant
What place this is; and all the skill I have
Remembers not these garments; nor I know not
Where I did lodge last night. Do not laugh at me.

William Shakespeare: King Lear, Act 4, Scene 7

"Even though our brains age, it doesn't diminish our ability to create. Mental decline was once thought of as inevitable with aging. Scientists now know that is not true. The brain continually rewires and adapts itself even in old age.

Even dementia doesn't wipe out all aspects of creativity, indeed, some forms release astounding abilities to draw by people who never before did so, providing important clues to where the brain houses creative abilities."

Dr. Bruce Miller
Behavioural Neurologist, University of California, San Francisco.

Defining Dementia

The following is an edited description from Wikipedia, the non-profit organization that operates the open encyclopedia:

Dementia is progressive decline in cognitive function due to damage or disease in the brain beyond what might be expected from normal aging. Particularly affected areas may be memory, attention, language and problem solving, although particularly in the later stages of the condition, affected persons may be disoriented in time (not knowing what day, week, month or year it is), place (not knowing where they are) and person (not knowing who they are).

Symptoms of dementia can be classified as either reversible or irreversible depending upon the etiology of the disease, although dementia, by definition, is irreversible and will eventually result in death. Probably less than 10% of all dementias are reversible. Dementia is a non-specific term that encompasses many disease processes, just as fever is attributable to many etiologies.

Early symptoms of dementia often consist in changes in personality, or in behaviour. Often dementia can be first evident during an episode of delirium. There is a higher prevalence of eventually developing dementia in individuals who experience an acute episode of confusion while hospitalised.

Dementia can affect language, comprehension, motor skills, short-term memory, ability to identify commonly used items, reaction time, personality traits, and executive functioning. Even without signs of general intellectual decline, delusions are common in dementia.

Elderly people can also react with dementia-like symptoms to surgery, infections, sleep deprivation, irregular food intake, dehydration, loneliness, change in domicile or personal crises. This is called delirium, and many if not most dementia patients also have a delirium on top of the physiological dementia, adding to the symptoms. The delirium can go away or greatly improve when treated with tender care, improved food and sleeping habits, but this does not affect the alterations in the brain. Affected persons may also show signs of psychosis or depression. It is important to be able to differentiate between delirium and dementia.


Who Has and Who Will Get Dementia

There are an estimated 18 million people with dementia worldwide. By 2025, it is projected that this figure will have doubled to 34 million. Dementia affects around 1 in a 1,000 people in the UK between the age of 40 and 65; 1 in 20 people over the age of 65; and 1 in 5 people over the age of 80. I've illustrated this in a graph below to show how many of us will suffer from this condition:

graph showing incidents of dimentia

Lost and Secret Worlds

As a very young child I moved from house to house, never staying longer than a few months in any one place. My mother and father had difficulties living with one another, although neither was to blame for their inability to cope. When I was close to four years old my two aunts stepped in and gave my sisters and I a stable environment, one where we would all see far more of one another.

I grew up in an unconventional setting and this has greatly informed my approach to life. My mother was in and out of psychiatric hospital all her life, and as a child I would visit her and observe the many lost people for whom life had often been a cruel experience. Struggling to find themselves in a world of medication, institutional dependence, and social isolation, many would arrive as more complete than they would leave, that is if they ever left. Some like my mother would come for a few months and escape after good behaviour, many others would never be released and would live out their profoundly sad existence in the forced company of others they would have never chosen to be with. I soon came to realize there was no more than a hairs breadth between those inside the walls of madness, and those living and working outside in the free world of the majority.

It was during my frequent visits to Park Prewett in the 1960s and 70s that I first came across people who were living with dementia. In those days people with dementia were perceived of as having "lost their mind". As a child however I knew of many in the hospital who would share a moment with me that for a brief and precious time let me into their world, a world that was far more than the nurses or doctors were aware of or appreciated. The patients protected themselves from the judgments of those in the institution who would without hesitation, forcibly sedate, and on many occasions electrocute them in the name of "therapy" should their behaviour become "unacceptable". There were nurses and doctors who were kind, but those who were unkind would strike fear into the heart of those most vulnerable of souls. For years this fear prevented others from seeing the secret worlds that the inmates had built.

Now, in the West, those who have difficulties coping with life or with a tendency that others find "not normal", are largely treated differently by the state and society than thirty years ago. Those with dementia are also better understood and cared for.

There often comes a time however when those caring for their loved ones with dementia, having given all they have and lost all they had, find their feelings change. The person they once knew "is gone". To these carers only a physical shell resembling the person they once loved remains. Life becomes too painful and difficult. Guilt ridden, they hand over their charge to others. It is in these most difficult of times when a loved one with dementia who has been placed into the care of others might ask "why do you leave me here? When am I going home?"

Our sense of home can be expressed as a place where we feel valued, of use, loved, and at ease. Achieving this state of equilibrium continues to be possible, even at the most challenging times, and creativity can be a vital force that assists in this aim.

Creativity and Dementia

Dementia in its early and middle stages can open a world that had previously been hidden from view. People with dementia are often more open to explore and develop their creativity than those without the condition. The social inhibition and unwillingness to experiment that defines the world of the majority gives way to a more flexible and often more rewarding approach to life. In some ways those with dementia often become less constrained by social etiquette and display more open, honest behaviour that might otherwise be hidden from view.

I am not advocating painting, visual design, poetry, or composing music as "therapies" as this undermines the potential value of what is produced. Some mistakenly judge the worth of creative works in terms of their evidence of technique or "cleverness".

Poetry for example might be viewed as a creative area not appropriate for people with dementia as it requires a "good use of language". Society often values the intellectual above other qualities as we use language to articulate our thoughts, observations, and arguments. People with dementia however not only have difficulty with using language in this rational way, but also more generally with tasks associated with memory. The language process however is not purely rational and relies equally on the significant unconscious mechanisms that gravitate towards the more emotional and sensual. Great poetry is created by those who are attuned to the nonintellectual/rational and even the most cerebrated of authors have an editor on their tail. A carer can be that editor working in partnership with the person with dementia.

Writing poetry or having someone else record a poem can be tremendously confirming of a person's sense of identity because people with dementia are often neglected. People don't talk to them because they find what they say strange and what they do strange. When we take the time to listen there is often far more being said than we at first realize.

Music often continues to connect long after other avenues appear to be closed off. Something very difficult to achieve in what is often a very lengthy period of silence and sadness is to not focus on wanting "the person we knew" to return, but to respect and welcome the person that is here today. For those in the late stages of dementia where all that appears present is of the body, it is important for the carer to also explore their own creativity.

The Importance of Touch

Sometimes a patient with dementia seems so far down a path that is removed from the world of the rational, that it might be judged as counter-productive to "stimulate" them with tasks or creative challenges. It may be that for some with the late stages of dementia, strategies that seek to open new pathways might be frightening and bewildering. For these people it might be judged that what is of most importance is to reassure and support the individual with an essential humanity.

Talking gently, respectfully, and physical reassurance through touch, often communicates and encourages a profound sense of peace. We can forget that being creative is not always focused on the skills of the mind, but as much on our sensory connection with those close to us.

The Choice

Many of us will face a choice between viewing the world positively or negatively. My mother took her own life one Christmas some twenty five years ago because she felt so profoundly alone and unknown. My father died some five years later as the booze he depended on for solace from the failure of his marriage and lost potential broke his body. It was from that time the choice of how I was to move forward became clearer. In such times the world is either a place full with hope or a place of desperation. As Andy in the Shawshank Redemption says: "Get busy living, or get busy dying". The choice of which world we inhabit is very much up to us. I believe the exploration of our creative potential can be a powerful and constructive force in helping us find the more positive and ultimately enriching path.

Useful Links

The Alzheimer’s Association:
The first and largest voluntary health organization dedicated to finding prevention methods, treatments and an eventual cure for Alzheimer’s.


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Authors background
Mike de Sousa is the Director of AbleStable®. Mike has been commissioned as an artist, music composer, photographer, print and web site designer, and author. Mike is also the Creative Director of 2BrightSparks, a software company.

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