Aug 28, 2018

Should we be talking in a different way about people with dementia?

The other day I read a news story that troubled me, and still has me thinking. It was in the online Sydney Morning Herald, and was written about comedian Billy Connolly, and quoted longtime TV chat host Michael Parkinson. The heading kicked off the disturbing element, by saying “Billy Connolly’s brain has been ‘dulled’ by Parkinson’s, says TV legend.”

The article went on to describe how Connolly’s mental capacities were now being diminished as a result of having Parkinson’s disease, with which he’d been first diagnosed in 2013. And his friend Parkinson didn’t hold back on the details, with comments such as:

  • “The sadness of Billy now is that wonderful brain is dulled.
  • “I saw him recently… and it was very sad because I was presenting him with a prize at an award ceremony.
  • “We had an awkward dinner together because I wasn’t quite sure if he knew who I was or not….He said to me, ‘How long have we known each other?’
  • “To know someone as long as I knew and loved Billy, it was an awful thing to contemplate that that had been taken away from him.”

What I was left with after reading that article was a feeling of sadness that Parkinson could so casually skewer the Connolly of now, in the light of the Connolly of before, by dragging out all the disparagingly pitying comparisons between the two that we typically hear about anyone with dementia.

A person with the capacities of Parkinson could, instead, have had the wit to look at some of the recent views on how best not to simply stigmatise someone whose intellectual functioning has changed. Writing in The Sydney Morning Herald in 2013, for example, senior dementia design consultant Meredith Gresham asked “How much are we reinforcing only looking at dementia through the lens of loss for people with dementia, family and professional carers? Turning to one of the books on my bookshelf, Tessa Perrin’s Wellbeing in Dementia, I did find practical hopefulness that so many are looking for:

“‘The more people see that people with dementia, when given the correct support and care, can live rewarding and happy lives, the less cause there will be for fear of the condition.’”

And earlier, in 2008 in a Weekend Australian Inquirer, writing about Hazel Hawke, then living with Alzheimer’s, her daughter Sue Pieters-Hawke was very prepared to face the realities of her mother’s condition, saying that “I would never stray into the hippie-dippy territory that romanticises dementia; to do so is to ignore the awful losses that accompany the process.” At the same time, she passed on some very sage advice:

“Learn the art of fragmented, irrational conversation, and follow the person’s lead instead of trying to control the dialogue. It’s a different way of relating, in which one starts to hear the threads of meaning and purpose buried in the cheerful meandering conversations we now have. It demands a kind of surrender to a sort of shuffling dance that has no agenda, no need to arrive at any particular destination.”

How much more pleasant a conversation could Parkinson have reported on if he had followed this advice, and his friend Connolly’s lead? Billy Connolly gave much to the world with his wonderful comedic talent. And now it’s time for his friends such as Parkinson to give back to him by accepting who he is and contributing to his quality of life in the present, rather than diminishing him as a person because of his condition.

More broadly, it is time not only for Parkinson, but also for the rest of us who are describing dementia from the outside, to think about how we can best enjoy the moment that we’re in with those of our old friends and family who have joined the one quarter of our ageing population who have been diagnosed with a form of dementia. And, most importantly, we should go on spending satisfying times with them on their evolving terms, rather than leaving them isolated in their new world.

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  1. I agree. I think it is demeaning to speak about older people with dementia, as if they needed to be pitied instead of celebrating their life. Older people should be honored for their achievements not publicly humiliated, especially from a so-called friend. It drives me crazy when I go somewhere with my Mom and someone tells me how cute she is and speak to her as if she is a little child. I have had to tell them that she is a grown up. My Mom was a Nurse and a widow who raised four kids ages 1 to 9 on her own. People think that they are being kind but they lack empathy. I don’t think that anyone would like to be treated like that when they get older. I’m sure if Mr. Parkinson would take the time to tune in and look past his memory loss, he would find out that Billy Connolly still rocks.

    1. I agree with you, education is vitally important, in saying that, it also depends on the individual’s perception of the Process, some never really accept the Dementia Process, it’s slow and insidious. I love helping people living with Dementia, it’s hard but very rewarding.

  2. Thank you. The two stands out messages for me are:
    Describing “someone whose intellectual functioning has changed” is wonderful because it reminds us that there is still plenty of functioning going on if we focus on that.
    Likewise, “threads of meaning and purpose buried in the cheerful meandering conversations” allows for a much more positive approach and richer communication.

  3. I cannot see that Michael Parkinson did or said anything wrong, He was very sad that Billy Connolly was as he is, the mind is blurred. It no longer works as it should,. When you have a loved one , as I have, my husband has Alzheimer’s, it is almost impossible to get through to them what you are telling them about family , or what you are doing etc.. He is not sure who I am, it is very sad, but nothing you can do to change it.

    1. Hello Sheila,

      I couldn’t agree with you more, about the sadness of slowly losing a person you know and love, as they progress into a different mindset. I understand from the time during which I cared for my mother, in a similar situation. Having said that, I still miss her, and would rather she was still with us, in those final stages – still enjoying cuddles from a great grandson despite not realising the relationship – than not here at all.

      At the same time, from our experiences we also know that the diagnosis of dementia doesn’t mean an instantaneous change, but one that progresses in ways that differ amongst individuals. And during that time, the sufferer may well be aware that things are changing, and is greatly helped when those who love them support them, rather than publicly exposing their lapses at this vulnerable time. It came as no surprise to me, therefore, that shortly after Parkinson’s article, Billy Connolly did a rebuttal that showed that he was quite aware – and very unhappy about – what his “friend” had written about him.

  4. I was diagnosed with Parkinson’s disease a year ago at the age of 67. For several months I had noticed tremors in my right hand and the shaking of my right foot when I was sitting. My normally beautiful cursive writing was now small cramped printing. And I tended to lose my balance. Neurologist had me walk down the hall and said I didn’t swing my right arm. I had never noticed! I was in denial for a while as there is no history in my family of parents and five older siblings, but I had to accept I had classic symptoms. I was taking amantadine and carbidopa/levodopa and was about to start physical therapy to strengthen muscles. Finally, I was introduced to Kycuyu Health Clinic and their effective Parkinson’s herbal protocol. This protocol relieved symptoms significantly, even better than the medications I was given. After First month on treatment, my tremors mysterious stopped, had improvement walking. After I completed the treatment, all symptoms were gone. I live a more productive life. I was fortunate to have the loving support of my husband and family. I make it a point to appreciate every day!

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