Are people with dementia ‘irremediably difficult’?

Image source: screen shot from strategy+business

In a blog published on 19 October 2018 on the site, strategy+business, There’s No Such Thing as Difficult People, written by Adam Kahane, there is a strong suggestion this is true.  I took a screen shot from the site of Adam to use here, which has some information about who he is, and refers to a book that sounds very interesting! Adams article has aroused my interest in any areas, but for  today, I will focus on whether people with dementia are difficult, or if it is in fact, others who simply find it too difficult to adjust their own beliefs, behaviours or judgements.

I’m almost sure people with dementia have been put into the box of what Adam refered to as “irremediably difficult”, and because of this, many staff also don’t want to work with ‘us’. It definitely ensures the ‘we are a burden’ narrative so often on social media platforms written by care partners. Yes, I know their job is really really tough, but so is having dementia. There was even some research earlier this year (sorry I can’t find it), showing evidence that nurses walked past those areas or rooms in residential care where there were people with dementia as they found them too difficult. It is a sad state of affairs, when a disease makes us unwanted, and nurses and paid carers choose to walk past us rather than to support us to live more positively.

Further on, Adam says:

“For years I’ve thought, “How fortunate I am to have the opportunity to work with such exceptionally good people!” But then my longtime collaborator Betty Sue Flowers suggested an alternative way of understanding these experiences. “These are not extraordinarily good people,” she said. “They are ordinary people whom you are enabling to be good through the way you are working with them.” So perhaps there are no difficult people — only situations in which people seem to us to be difficult. Flipping my perspective in this way has helped me to draw lessons from my professional life that can help us all deal with the so-called difficult others we know.

Taking this idea in particular (and in fact, his whole blog), made me believe even more that people with dementia are not “irremediably difficult”, that ‘we’ definitely do not have challenging behaviours or BPSD, and in if those supporting us, at home, or the community, or in an assisted living setting worked collaboratively with each other, and with us, their would be no difficult staff or clients. Sometimes the pathology of dementia may induce things such as hallucinations, paranoia and other real psychiatric symptoms, but most of the time, our responses are completely normal to the situation we find ourselves in, or the way people speak to us, treat us, or indeed, ignore us.

In his blog, Adam also says: “We may notice recurring patterns in the situations we find annoying, frustrating, or upsetting, and it might turn out that these triggers have more to do with us than they do with the other person.

When we say that another person is difficult, we are focusing on our take on what they are doing.

However, if we can suspend our judgments, we may notice recurring patterns in the situations we find annoying, frustrating, or upsetting, and it might turn out that these triggers have more to do with us than they do with the other person.”

Oh my, how this rings true… and health care professionals and anyone supporting a person with dementia need to look in the mirror first, to see what it is that they are doing (or not doing) that may cause someone to be appearing irremediably difficult, or angry or distressed. It also reminded me of one of my own blogs, Would you like you, if you met you?

6 thoughts on “Are people with dementia ‘irremediably difficult’?

  1. I totally agree with your blog Kate, having worked with many people with different disabilities and behaviour expressions. I have spoken with colleagues who discuss the behaviour of our clients in a negative way, even put in hazard reports about them, but found the same clients to be nothing but nice and pleasant to me. I don’t do anything special except talk to people with respect and engage them with things that interest them. When tasks need to be done, we can offer support in a dignified way. Everyone works together when respected. This applies to everyone, disability or not, as there are sometimes colleagues with whom I do not work well with. I respect their position and move away if I can. We all need to look in the mirror when we encounter a problem (be it a person or something else), as our life and how we deal with things and people is a true reflection of ourselves.
    Thank you Kate, I do enjoy reading your wise words and reflections on your life and experiences. It helps me to reflect on my own and interact with others in a more meaningful way.

    Liked by 1 person

  2. Everyday we each have difficult challenges and situations we have to navigate it’s called living. In each of these situations we make choices and our choices impact the situation and others involved. These choices we make will reflect if we putting our own interests and needs first or the interests and needs of others before our own? The words from Patch Adams rings in my ears ‘every moment is a choice’. We can’t always do incredible things but we can choose to do small things in an incredible way when we put the needs of others before our own. Our choices are like a stone thrown into a pond there is always a ripple effect. Often we don’t consider the ripple before we dispense the stone. Too often we are the one creating or escalating the situation but admitting this after means we are accountable and accepting responsibility🙀When it’s easier to shift the blame to another especially if we convince ourselves they are after all irremediably difficult and my choices where not to blame. Thanks Kate for making me stop and consider my choices x ness

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  3. Assuming that people with dementia are difficult probably rests on the belief that dementia strips away a person’s personality and replaces it with a stock standard horrid muddle, a one size fits all sundowning brute that is prone to exhibit grossly psychotic symptoms at a drop of a hat. The answer to that would have to be NO!! and I have directly observed this. Some of the members of a community organisation I work at have dementia and they are most certainly not alike, I would not expect them to be they are people and I have never encountered a person with an identical personality to another person. Nor are both these coworkers difficult or dangerous to work with. I won’t provide direct criteria here but I have worked with all sorts of people some of whom are anti social bullies. Neither of the two people who have dementia exhibit those personality traits. I would hear others say that they are deteriorating and will become difficult eventually. The answer to that is again NO . I have been a nurse and have encountered many people with advanced deterioration due to dementia and it all depends on the client. Certainly people at that stage need very good nursing care but nursing their behaviour depends on the person you are dealing with because even at that stage people still have personalities none of which are stock standard. The adage that no two people are alike applies even with management of people with neurological deterioration. Dementia is not a cookie cutter that strips away people’s personality it can most certainly impact on and affect it because memory and perception are big parts of what contributes to personal make up but dementia is not the devil’s cookie cutter. Some years back a very good friend was in the final stages of Lewy Bodies dementia. He no longer could recognise me but II still could talk to him because much of the man I knew was still there and many memories were still common. We ignore this about people with dementia at our peril and disregard them as human beings again at our peril. Farewell to that friend . He was a brave and good man.

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