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Caring for Those with Dementia

This week I want to turn my attention to dementia. (Yes, I know some of you think I am talking from personal subjective experience!)

As a result of some serendipitous circumstances (she had heard of me from a mutual acquaintance and acquired a couple of my books) I got to meet an extraordinary lady. The inspirational person is Jane Verity. Jane is the founder and CEO of Dementia Care Australia. On my recent trip to Beijing I had a couple of hour’s stopover at the airport on returning to Australia and Jane kindly agreed to meet me there.

Her thesis is a relatively simple one. She maintains 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.

George Bernard Shaw in “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. So if your 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 allow us to discard them as human beings and treat them as some lesser form of humanity.

Jane’s approach represents a mind shift:

• From defining dementia as a medical problem to defining it as a social and psychological challenge for those experiencing dementia
• From focusing from 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.

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.

This approach positively counters a tendency of many to relegate dementia sufferers to some less than human status. As Jane writes, “…society places a high value on thinking, memory and productivity. Strong biases exist against disabled people, especially older people with dementia who no longer contribute to society in the usual ways. They are easily disregarded because often they can not speak for themselves.”

Jane is adamant that with proper care the condition of dementia sufferers can be improved. Compare this with the fatalism of the medical approach which predicts an inevitable process of deterioration and decline.

She writes about this more positive approach.

“Rehabilitation specialists are accustomed to enacting positive change among persons who have disabilities. First they work on minimalizing the disabling condition to ensure the highest level of the individual’s functioning. Second, they strengthen the person’s other abilities to compensate for any limits. Rehabilitation may not restore a person’s memory, thinking and other brain functions. However there is much that can be done to minimize and compensate for limits and enhance remaining skills and abilities. Too often dementia is associated with doom and gloom. Thinking in terms of a person with disability means that you focus on the individual’s possibilities instead of their limitations of impairments.”

Communications is a vital component to Jane’s philosophy. Connecting with someone whose cognitive and verbal skills are impaired is a problem. Jane is an expert in Neurolinguistic Programming (NLP) and emphasizes the importance of body language and non-verbal skills in forging a relationship with those with dementia. (It is true also of the wider population but even more so with dementia sufferers.)

It is also emphasized that because of the short term memory loss of dementia sufferers it is easier to relate to them by reminiscing about past events than trying to have meaningful communication about recent occurrences. I have had personal experience of this. One of the loved ones in our family in his later years was often frustrated because he couldn’t remember who had visited him this week or what people had bought him for his birthday. I could see he was distressed by this. So I said to him once, “One of our grandchildren is starting school soon. It is a pretty significant event. Can you remember starting school?” And away he went. He remembered the girl who had been assigned the task of walking him to school. He talked about his teacher and the classroom and those that sat next to him. I was really astounded by his recall. From then on whenever we visited him and came to one of those awkward moments about what to talk about, I encouraged him to reminisce which he seemed to find enjoyable and I found delightful!

In the first century BCE, the Oracle of Delphi admonished us that an individual should “Know Thyself.” In the twentieth century the good Dr Phil expanded the theme and advised that we should “Know ourselves, Accept ourselves and then Forget ourselves.”

Jane points out that self-awareness is critical for practitioners of dementia care. (I would have to tell her it is critical for anyone in a leadership or helping role!) Again she writes:

“Challenging behaviours are opportunities to hold up a mirror and learn something about yourself. These situations often reveal how you feel about yourself, your relationships, your beliefs, your sensitivity, your self-confidence. These personal thoughts and feelings influence how you interpret challenging situations and shape your responses. If you do not feel good about yourself or your residents, you are likely to respond with mistrust or dislike. If you feel good about yourself and those in your care, you are likely to respond with understanding and compassion.”

I thought that meeting Jane and hearing of her work was most inspirational. Her enlightened way of treating dementia sufferers, in my view, could not help but bring good results. I sometimes think that we ordinary mortals making our way through our lives little realize how much our world owes to people like her and those of her foundation.

If you want to know more about this important work have a look at the organisation’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. 1 Comment(s)

  2.   By Greg Brown on Dec 11, 2011 | Reply

    I think that many people are frightened by dementia Ted. Probably in a lot of cases more frightened of dementia than death. Unfortunately we tend to avoid what frightens us so avoid thinking about death and avoid contact with those suffering dementia. It is confronting and frightening.

    My natural instinct when talking to someone with dementia is to try to assist them to remember short term things, but I think you are right, it probably is best to talk about the past and not the present. It would certainly be more enjoyable for both parties and lets face it, most conversation is for the enjoyment of the conversation itself and not the content anyway.

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