Hazel McHaffie

And Still the Music Plays

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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Dementia? Think again!

With my own book about Alzheimer’s safely published, and my mind more to grips with the fact that I’m now living with dementia in my private life, I’ve had space to go back to reading about the subject. Facts this time, more than the fiction I’ve warbled on about before.

And it’s rainbow time.

But before I antagonise anyone by seeming too idealistic, let me hasten at the outset to acknowledge a basic reality. No-one wants to develop dementia. No-one. Neither patient nor family will embrace it willingly. If it does snake its way into our lives, it’s natural to be sad and to grieve for all that is, or will be, lost. But the very fact that we can’t reverse the process makes it doubly rewarding to learn that the glass can still be half full, or maybe a quarter, or … And having been through a kind of grieving process myself this year, I want to share something of that discovery.

I’ve read too many things to bore you with anything comprehensive, but three books make me want to send an email to everyone who is dealing with dementia in any capacity. They are

Contented Dementia by Oliver James
And Still the Music Plays by Graham Stokes
I’m Still Here by John Zeisel

All three are
– written by people with real hands-on experience
– built on the premise that understanding the inner world of the person with dementia can have a considerable effect on the lives of all concerned
– designed to be read reflectively not quickly
– starting points that prompt contemplation, questioning, and perhaps even a little experimentation.

You might find aspects of them irritating at times – I know I did! But I’m an impatient ratbag anyway. Bear with them anyway. Why?

Contented Dementia describes in detail a method of responding to someone with dementia in such a way as to minimise confusion and distress, and to steer them into a safe and happy place. The strapline captures the sense: 24-hour Wraparound Care for Lifelong Well-being. It puts a different slant on behaviours that are potentially trying – even the endless repetition! – and shows how they can be made to work for good. This book is written by a psychologist, and I was much struck by his introductory comment at a session I attended in the Edinburgh International Book Festival: ‘I’m probably the only man in the country who, if I develop dementia, would like to be cared for by my mother-in-law!’ Some recommendation, eh? But it was she who devised the Specal scheme outlined in his book.

And Still the Music PlaysAnd Still the Music Plays is a series of very readable stories about people exhibiting challenging behaviours. It provides insight into what might be causing someone to wander, to be agitated or aggressive, and how to channel that understanding so as to prevent or reduce distress. This one is the easiest and most entertaining read of the three, but gives a way through the most demanding of experiences. And it offers a glimmer of sanity for carers at their wits end trying to deal with violence and severe hostility.

I'm Still hereI’m Still Here offers a gentle, artistic approach, describing ways of connecting with abilities and emotions that remain intact, and of enhancing the quality of life of the person with dementia (and their loved ones) by maintaining those connections with people and the wider world. There’s more medical and specialised language in this one but it opens up avenues to pursue which are accessible and available to most of us – art and culture, drama, meditation.

So, to anyone who is working alongside or living with people with this illness, I recommend one or more of these books. To everyone else I say, if you avoid contact with people with dementia, or have a horror of the disease yourself, give it a whirl. It’s possible that knowing more could just reverse your opinion, increase your capacity for compassion, and even enhance your own life.

As for me, I’m lost in admiration for the people in these books who have cared enough to search for understanding, and who have enriched the experiences of those who would otherwise have been left anxious, agitated, apathetic or aggressive. I salute them all and hope their philosophies will percolate far and wide, and make the world a better place to live in.

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