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Preserving the Mind and our Sense of Self-Worth

I am an inveterate jogger – in fact with the recent  passing of another birthday, I should probably say a veteran, inveterate jogger. Once I might have euphemistically described myself as a runner. But my dictionary confirms that to jog means to “run slowly” and given that it is some time since I passed anybody (I find it difficult to even pass fit walkers) I think that is a fitting description of my morning perambulation.

It was perhaps a decade ago that I became aware that my morning exercise was getting more inclined to relate to the passage of tortoises rather than hares. On this particular day I was running along the bicycle path on the northern bank of the Brisbane River. All at once I came upon a group of young women progressing in the same direction as I was. They had just come down the grassy bank onto the track and were beginning to run. They were chattering among themselves when I passed them. I called out a perfunctory “good morning” and they responded amiably. A minute or so later, when I was almost out of earshot, one turned to the others and said (as well as I could discern), “God, we’re a slack lot letting that old bugger pass us like that!”

My doctor warned me off jogging. She said that it was too arduous and I was likely to damage my joints and muscles. I think she was just trying to tell me I should act my age. (I like my doctor. She told me once that an alcoholic was somebody who drank more than their doctor, which was reassuring coming from somebody who I know enjoys a tipple herself). I have suffered some damage from jogging. In recent years my calf muscles let me down. Even though I now take the trouble to do a few perfunctory stretches before I jog, occasionally I tear a muscle. As I get older the muscles seem to take an inordinate amount of time to heal which frustrates me greatly. Even as I write I have a twinge in my left calf that will probably keep me out of action for a while.  (I might also conjecture my hair loss is associated with my jogging – about ten hairs per kilometre I would estimate!)

“So what?” you might ask. Everybody ages and with it comes some, quite often substantial, diminution of our physical capability. I hasten to add I am not seeking your sympathy. I see many around me who have greater age-related physical incapacities than I have. And age has some compensatory dimensions (but not enough from my point of view)!

What is of a greater concern is the onset with ageing of the array of mental conditions we know as dementia which affect our mental capability. In the end it is quality of life that matters. If I have to give up jogging and be bored to tears walking for exercise, I will undoubtedly cope. I am far less optimistic about my ability to cope with dementia. As many of my blog essays have indicated to you, it is clear to me that my sense of well-being is less connected to my body than to the state of my mind.

Dementia is an umbrella term for a syndrome associated with more than 100 different conditions characterised by impairment of brain function.

In their book Maximum Brainpower, Shlomo Breznitz and Collins Hemingway explain:

“[Dementia] is a symptom of an underlying organic cause, usually classed as vascular or Alzheimer’s. Vascular dementia can be caused by several different problems, all of which directly kill brain cells; a haemorrhage that leaks blood into brain tissue; a clot that lodges in a small artery and cuts off blood flow; or a vascular spasm that has the same effect. The cause can also be organic or external in the form of a blow to the head.”

Alzheimer’s disease presents an assault on our self-concept. Not only do we lose memory (and memory of course underpins the narrative of who we think we are) but it also takes away our ability to plan and run orderly lives. We first lose our memories and then our ability to function in the here and now.

Obviously with an ageing population we are going to be faced with many more people suffering dementia. It is reported that there are currently more than 300,000 cases in Australia with an additional 1600 being diagnosed weekly.

I have written about dementia previously. Some years ago I was fortunate to meet Jane Verity, the CEO of Dementia Care Australia. She pointed out that that those with dementia suffer not only from the symptoms of neurological degeneration resulting from the affliction but perhaps even more so from how they are treated.

This latter phenomenon has been called “The Pygmalion Effect”. George Bernard Shaw in his famous play, Pygmalion, had Eliza Doolittle say, “You see, really and truly, apart from the things anyone can pick up (the dressing and the proper way of speaking and so on), the difference between a lady and a flower girl is not how she behaves but how she’s treated. I shall always be a flower girl to Professor Higgins, because he always treats me as a flower girl, and always will, but I know I can be a lady to you because you always treat me as a lady, and always will.”

And how true this is! We often conform to other’s expectations of us. As we saw above our self-concept is already put under threat by dementia preventing us living “normal “lives. So if carers believe that those with dementia are somehow less than human, that they have “lost their minds” and treat them accordingly, then of course it is most likely that their observations will reinforce this belief and thus aggravate our sense of loss of self-worth.

 

Barry Cohen, a minister in the Hawke government, has written some rather poignant articles on his battle with dementia. He spoke of how dehumanized he felt when he had to be institutionalized for a time.

 

He writes:

 

“The suffering of many with dementia is beyond belief, a living death. Boredom and loneliness are soul destroying and may be a major cause of suicide.”

 

Regarding his experience in institutionalized care he recounts:

 

“Residential care has improved but ‘quality of life’ appeared to be a secondary consideration. That was certainly my experience. The architecture raised boredom to an art form.

 

With rare exceptions home care units are the same size, shape and colour – green, cream and tan. My facility had about 130 units. No wonder inmates wander into the wrong room. It is blamed on their dementia rather than the monotony of the colour scheme but trying to find your way around is like trying to find your way out of the maze at Kew Gardens. The design not only contributed to confusion and falls but to some difficult behaviour.

 

People working in aged care are almost universally lauded and rightly so. The work is challenging and not financially rewarding. Yet some people seem to forget that a person with dementia is a normal person with memory loss. Sufferers are often denied the right to decide simple things like what time they will get up, what they eat, whether they go out, how they spend their money and who they socialize with.”

 

When I met Jane Verity, she expressed similar concerns to Barry.

 

Jane found inspiration in the work in the late 80’s of Dr Tom Kitwood, founder of the Bradford Dementia Research Group. He called his approach “person-centred care”. This methodology called for carers to focus on the person with dementia rather than just on the disease and its unfortunate symptoms. The underlying thesis behind this approach is a requirement that the carer “look at the world from the perspective of the person with dementia.” He pointed out (and this seems true of all mental illness) no matter how strange the behaviour of the sufferer might seem to others, it makes sense from their point of view and is usually a coping strategy.

 

Consequently Jane’s approach represents a mind shift. Her approach to dementia is founded on such a transformation:

  • From defining dementia as a medical problem to defining it as a social and psychological challenge for those experiencing dementia
  • From focusing on what’s “wrong” with the person with dementia to building on their strengths and resources.
  • From focusing on difficult behaviour as a symptom of dementia to an experience of unmet needs.
  • From focusing on the physical needs of the person with dementia to also meeting other human needs, such as social, emotional, psychological and spiritual.

 

Now once upon a time we believed that our brain capacity had largely peaked in our early twenties. The neurons we had acquired by then and the neural pathways that had developed by then had climaxed and after that, as far as our brains were concerned, it was all downhill. In recent times we have found that the brain has the capability of significant improvement of its cognitive functions right until our latter years. (This malleable quality of the brain is called brain plasticity and has been admirably described by Norman Doidge in his beautiful book The Brain That Changes Itself.) Indeed, particularly in the areas of emotion and movement, it is now apparent that improvements can be made right up until the time of death.

 

As a result of what I now know about dementia coupled with this new understanding of brain plasticity, I believe there are two strong lessons to be learnt here.

 

Firstly for those unfortunate enough to be afflicted by dementia, it is essential in our dealings with them that we never overlook their humanity. The work of Jane Verity and others like her stand out in this regard.

 

But secondly we have now found some effective defense mechanisms to guard against the onset of dementia. In order to maintain, and hopefully enhance its capabilities, the brain has to be challenged.

 

To begin with, research shows that higher education acts as a buffer to cognitive decline. Unfortunately this is not available to all of us. Yet there are many other ways that have been shown to be effective in this regard. Learning another language, learning how to play a musical instrument, challenging the brain with puzzles like crosswords and sudokus, regular physical exercise are all strategies to increase the resilience of our brains. Of course this is all made easier if we are able to challenge the brain doing something we love. It is so much easier to  maintain the discipline if we are doing so from joy rather than a sense of compulsion. So if the sufferer is engaged by ballroom dancing or crocheting,  we are more likely to see sustained improvement if we can engage those interests.

 

Intellectually challenging work, variety in leisure activities and exercise are important jn building our cognitive reserves which will help us ward off dementia.

 

But in order to do this we face the usual human dilemma. Things that challenge us can be stressful. In my management role I have often said that good organizations are often uncomfortable places to work because people are being challenged. No doubt at the individual level we encounter the same problem. What is good for us, in terms of our mental health, will take us out of our comfort zone. As we saw above this can be made more palatable by finding challenges in activities that we have previously enjoyed or excelled at.

 

It is a shame we have to confront this awkward dichotomy but I have little doubt that those who are not brave enough to be challenged are slowly slipping into cognitive decline!

 

So in terms of our long term mental health we have to bite the bullet, get out of our comfort zones and challenge our brains.

 

Despite this, with our ageing population many more of us are going to suffer from this debilitating disease. Caring for those who have succumbed to the dreadful plague of dementia requires a new paradigm. Jane Verity and her organisation seem to understand how to care for such people without compromising their humanity. We need to respect the human dignity of these unfortunates despite the confronting symptoms they might display.

 

When age overcomes me and I am faced with diminished physical capability I might need the help of my loved ones to eke out the rest of my life. If dementia overtakes me please heed the work of Jane and those that think like her to try and sustain my sense of self-worth. That is probably the greatest gift that you could bestow!

 

If you want to know more about this important work have a look at Dementia Care Australia’s website at:

 

www.dementiacareaustralia.com

 

Also I would recommend to you “The Art of Dementia Care” co-authored by Daniel Kuhn and Jane Verity, Publisher: Thomson Delmar Learning, ISBN-13: 978-1-4018-9951-6

 

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  1. 2 Comment(s)

  2.   By Mark Shaw on Jan 19, 2015 | Reply

    Ted

    Having lost my father last year and having my father in law slipping away slowly at present, this topic and your comments are timely for me personally.

    I too feel that the physical care of our elderly is of a high quality but the life care remains a significant challenge.

    While I don’t have an answer, I think the need to discuss and perhaps debate the issue is important. Thanks as always.

  3.   By tedscott on Jan 21, 2015 | Reply

    Thanks Mark. This is a difficult and confronting issue. I would like to think that we could improve the quality of life of sufferers by showing a little more respect to their humanity as Jane Verity advocates.

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