Hazel McHaffie

challenging behaviours

Understanding dementia

When I first met my future husband’s grandmother she referred to me as ‘the door handle’. I had no idea how to respond apart from with a shaky smile. By the time my mother developed vascular dementia decades later I was considerably wiser and more confident. Given the exponential rise in incidence rates, all of us must surely come into contact with dementia in one form or another at some point in our lives – a high proportion up close and personal. Having a degree of insight into the condition can transform a tricky situation into a meaningful experience.

As part of preparation for the Portobello Book Festival I’m appearing at in two days time, I’ve just re-read a book that was pivotal in my own understanding of dementia many years ago. It’s called And Still the Music Plays by Dr Graham Stokes, a very experienced clinical psychologist. And I’d highly recommend it.

And Still the Music PlaysEach vivid and sensitively written chapter is devoted to the story of one patient/resident who is exhibiting challenging behaviours, and alongside the narrative the author unravels a rationale for why they’re doing what they’re doing. All too often relatives say dismissively or desperately, ‘This isn’t our mum/dad/aunt/husband/wife. It’s the dementia’, but Stokes’ contention is that many difficult behaviours are not simply attributable to the underlying pathology of the disease, but need to be seen in the bigger context of the person’s life and experiences. Often a simple change of tactic can avert an outburst or distress.

‘Functional analysis is the pursuit of finding out ‘why’ people behave in the way they do. People, whether they have dementia or not, rarely do things without reason. Sometimes we have to ask ourselves, “Why did I say that, why did I act that way?”, and while we may not always like what we find out about ourselves, there will have been a reason. Similarly a person with dementia has reasons for what they do …’

Some solutions were relatively simple. Drawing the curtains at night so that Colin stopped being fearful of the strangers (reflections) lurking outside, and playing his favourite mood music, calmed him noticeably. Changing the colour of a bedroom eliminated Mrs D superstitious fear of the colour purple associated in her Catholic mind with death, grief and mourning. Removing a china cat stopped phobic Lucy’s persistent screaming.

Stop for a moment and consider the setting of a care home, the things that are done there. How would you feel on the receiving end? Then it’s easier to understand why private, reserved, dignified people were disturbed when taken from the relative peace and familiarity of their homes and placed (trapped) in locked wards with complete strangers (residents) all behaving oddly or menacingly, and other strangers (carers) invading their personal space and insisting on doing intimate things to them in secluded places. How are these external factors perceived by a mind altered by inexorable disease? Mrs O went from being ‘the most violent woman I have ever encountered’ to a much calmer gentler soul when Dr Stokes uncovered her past sexual childhood abuse, and realised that she needed the anonymity and unambiguous messages of a disinfected treatment room for all intimate procedures.

I’m sure we can all recognise many of the triggers Stokes identifies: long standing inhibitions about using public toilets; dehumanising or degrading management; an obligation to sit at a table with strangers exhibiting objectionable manners and habits; ‘enforced’ or ‘expected’  socialising; relentless noise, interruptions and activity.

‘Functional displacement provides the person with an equivalent but more acceptable means of meeting their needs in a way that is neither as invasive nor as exasperating for carers to endure.’

What a difference it would make if more of us were sensitive to these triggers and had the patience and persistence to find ways to circumvent them.

As it says on the book cover: ‘Storytelling is the oldest and perhaps best way of learning known to humans.’ The author’s detective work with 22 unique human beings whose lives have been turned upside down by dementia makes compelling reading, and what’s more these accounts help us all to see how important it is to reach out to each individual with compassion and understanding. There but for the grace of God …

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Challenging behaviours

For those of you who are new to my blog, I should explain that I am no stranger to dementia. My mother developed the vascular form during the last year of her life; I’ve spent a fair amount of time over many years (as a volunteer) with people who are living with this and other variations of the illness; attended a number of conferences on the subject; read literally dozens of books about it; and even written one myself.Remember Remember

Even so, this week I learned several new facts about it when I attended a course on how to manage challenging behaviours. Did you know for example that changes occur in the brains of people with dementia that make them prefer sweet things? Some delegates on the course were salivating at the very thought of a cast iron reason for skipping the main course and diving straight into dessert … two desserts maybe!

Did you also know that memories are lost in the reverse order to that in which they are gained? Which is why the person might not know what they had for lunch but they vividly remember their mum.

The course tutor was really good, using both her academic knowledge and her practical experience (she was a manager of a residential home for people who presented with challenging behaviour) to excellent effect. All the delegates present are currently employed in caring for residents in care homes in their working lives, but don’t we all know someone with memory loss and confusion at some level? So the kernel of the course is probably relevant to anyone.

The secret to successfully being alongside them without getting distressed yourself, is to remember that challenging behaviours are a form of communicating something. If we’re uncomfortable or upset by these behaviours we are not ‘getting’ what the person is trying to convey. Remember Martin Luther King‘s comment: ‘Violence is the voice of the unheard‘? We have to ‘listen’ to what’s being ‘said’ by these reactions and try to think ourselves into the shoes of the person exhibiting the things which we find challenging; to work out what might be making them feel trapped or frustrated or afraid or embarrassed etc. And isn’t understanding how people tick, why they do what they do, the stock in trade of every novelist?

For me personally there was another very salutary lesson too: there is no shame in admitting ‘defeat’. There are days when I simply can’t make any headway with a person, I can’t ‘walk in their moccasins’, and I come away feeling guilty and dejected by my own inadequacy. Better to accept gracefully that today I am not the person to be with her/him, or to do that activity with her/him, I learned. Maybe indeed I am not the person best suited to this particular resident/patient/friend at all. It’s probably nobody’s fault; merely a feature of the disease.Aged hands clasped

I’m often asked if I’m a full time writer. No. But I’m sure I’m the better for spending time walking alongside these vulnerable people who can teach me such a lot, some of which in turn feeds into my writing life.

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