Tag Archives: Glasgow

I intend to promote the need of high quality wellbeing research at the SDCRN 4th Annual Conference on dementia in Glasgow today

This is the programme for today which I’m looking to enormously today.

I will be promoting heavily the cause of living well with dementia, to swing the pendulum away from pumping all the money into clinical trials into drug trials for medications which thus far have had nasty side effects.

In keeping with this, I have been given kind permission to give out my G8 Dementia Summit questionnaire to look at delegates’ perception of what this conference was actually about.

We need also not to lose sight of the current persons with dementia, to ensure that they have good outcomes in the wellbeing.

This can be achieved through proper design of care environments, access to innovations including assistive technology, meaningful communities and networks for people with dementia to be part of and to lead in, and proper access to advocacy support services and information which empower choice and control.

There’s a lot to do here – and we need to have high quality research into all of this arm of research too.

Coming back home to Scotland is like travelling back in time for me.

I was born in Glasgow on June 18th 1974, and my lasting memory of leaving Glasgow for London 37 years ago was how relatively unfriendly Londoners were in comparison.

Of course the train journey through the beautiful England-Scottish border countryside brought it back to me. There’s a lot to be said for getting out of London. It’s an honour to be here back in Scotland.

My book ‘Living well with dementia’ is here.

Contents

Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion

Reviews

Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’
Professor John R Hodges, in his Foreword

‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword

Book cover

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Tomorrow, hell freezes over as I attend my first conference on dementia since 1999

I have famously said, “All hell will freeze over before I attend a conference in dementia”.

freezing hell

Well, actually, tomorrow is the day that theoretically all hell freezes over.

I will be taking the train in the afternoon to go from London Euston to Glasgow Central.

It is in fact a very highly emotional journey for me. I was born in Glasgow on June 18th 1974. I am very loyal to my Scottish friends, as I have very happy memories of Scottish people. I remember thinking, at the age of five, how relatively unfriendly people in London were, when I moved down South.

I have been meaning up with Dr Peter Gordon for ages for this. Peter’s to be found on  Twitter as @PeterDLROW.  If you’re wondering “why DLROW?”, the answer is simple.

About 20 years ago, I used to administer myself the Folstein Mini Mental State Examination (MMSE) and one of the questions famously is “Spell the word “WORLD” backwards”. The full (abbreviated) MMSE is here.

For a few weeks, I have been meaning to take a break from tradition of usual slagging of conferences of dementia, which I’ve disparagingly called ‘trade fairs’, mainly because I’ve never been invited to them. This came to a head recently when I was fuming that nobody considered me good enough to invite me to #NHS #InvExpo14 (see blogpost here), and I was subjected to a torrent of tweets saying they were having such a nice time there.

My stance of railing against every single exhibition was scuppered when this conference in Glasgow came up. As per usual, nobody bothered telling me they were going. I only found out by complete accident. The organisers have even allowed me to show my book to everyone out of goodwill as they feel the book promotes research into wellbeing in dementia (which it does). I’ll be giving out my survey of #G8dementia to about 130 other academics, which asks searching questions about their perspective of the perception and identity of the #G8dementia conference held last year.

It’s known I have a longstanding interest in dementia. I’ve written a book called ‘Living well with dementia’, which is not easy for me to promote at all. I am simply lucky that I have been blessed by good friends such as @WhoseShoes who’ve been battling for me against all the odds. @WhoseShoes’ incredible biography on the day of launch is here. Indeed, @KateSwaffer and @norrms have been very supportive too, which is why I continue to hold the untenable thought that my book will one day influence policy.

But my friends have been AMAZING. This was @dragonmisery‘s mention of my book  on the influential ‘Dementia Challengers’ website about recommended  books. And @BethyB1886 has been wonderful too – here’s my mention.

In fact, I’ve been working on dementia long before CEOs or directors of research in dementia charities appeared on the scene. I did my Ph.D. in Cambridge, and my Brain paper in Brain is appreciated to be a seminal contribution to the field (and is in the current Oxford Textbook of Medicine).

ABuns1907

I think the world of Prof Alistair Burns (the clinical lead for dementia in England). I have given Prof Burns and Prof Sube Banerjee, the previous leader in dementia and an expert in wellbeing, a copy of my book. In fact, I am delighted that Prof Martin Rossor is intending to read my book too. Martin, for anyone of us lucky enough to have across his work, is simply outstanding. I am thrilled he has been appointed by the Chief Medical Officer as NIHR Director for Dementia Research.

I have become very pro-patient, particularly out of my disillusionment with what I perceive to be a failure of the medical model for people with dementia. I think at worst people end up with a label, attend outpatients every few months to get told whether their brain scans or cognitive testing have changed, and the medications have little efficacy for many in treating symptoms or altering progression. It was on seeing how my late father had to cope with excruciating back pain that I had an ‘epiphany moment’ of wishing to write a book which produced a synthesis of the notion of living well with dementia.

It is in fact a very far cry from my original published work on the drug treatments of dementia in prestigious international peer-reviewed journals: methylphenidate (ritalin) published in Nature Neuropsychology, and paroxetine (seroxat) published in Psychopharmacology, for patients with frontal dementia. But I’ve become acutely aware of false claims from Big Pharma about dementia, and the hysterical reporting of dementia by some in the light of  the Prime Minister’s Dementia Challenge. I remember reviewing the failures of these treatments as far back as 1999 for a chapter for a multi-author book edited by Prof John Hodges on early onset dementia. And the promises from Big Pharma and the dementia fundraising charities have not changed one jot.

So, now, I am finally feeling inspired to share some of my academic passion about dementia with others. I have had to conceal this passion for so long, but I think things came to a head when I witnessed people whose backgrounds were not in medicine, nursing or dementia making such a Horlicks in basic facts concerning dementia.

Still I suppose we’re all #inthistogether. But to varying depths.

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