Hazel McHaffie

I’m Still Here

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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