My Speech at the Launch Event of the Scottish Government’s new Dementia Strategy

I was invited by the Scottish Government to be a member of a ‘Lived Experience’ panel, which they established to ensure that the views of people with a diagnosis of dementia could contribute to the new national dementia strategy, an important priority for the Scottish Government, as for many worldwide, as our population ages.

The strategy is available here: https://www.gov.scot/publications/new-dementia-strategy-scotland-everyones-story.

Here was a link to my speech… now deleted by Dropbox!!!: https://www.dropbox.com/s/c96krvmtp5yi3yg/Danny%E2%80%99s%20speech%2031.5.23%20Dementia%20Strategy%20Launch.MP4?dl=0

Here is a text copy of the speech:

My thanks to the Minister, the officials of the Scottish Govt, my colleagues on the lived experience panel from whom I learned a great deal, and to all those involved in bringing this policy together … my thanks also to those who will implement it across the country to support those living with dementia.

I’ve been asked to say a few personal words today, so I’ll start by sharing a bit of my journey in dementia: my wife Joan and I first lived alongside dementia as it took unwelcome hold of my mother, then Joan’s mother, reducing their capacities, their memory, then their understanding and finally even some physical functioning, such that dementia was a cause of death on their death certificates.  I also supported (I hope) my wife, Dr Joan…  that’s her over there… as she worked on her therapy-focused research into the communication difficulties of those with a variety of disabilities, leading to her invention and development of the Talking Mats communication framework, now helping many people with communication difficulties worldwide, including many whose dementia has reduced their capacity for effective communication.  Given her expertise in these matters, it won’t come as a surprise for you to know that way before any doctor had sent me for a brain scan, she knew that all was not well with my brain – she was, of course, used to me ‘conveniently forgetting’ things I’d agreed to do – not, admittedly, an unfamiliar experience for many female partners and one that doesn’t immediately shout ‘early onset dementia’ or most of the male population would be sent for early diagnosis! Joan pushed me to go the GP and specialist referral followed. As a ‘typical man’, I’d been rather dismissive… but there was no dismissing the brain scan: large sections of my brain were no longer there. Looking at an onscreen medical scan of my shrunken brain was a life-changing moment for me, as it is for so many.

I found my cognitive decline very hard to take at first… dementia was for people in their 80s! And I’d exercised my brain well over the years… in my education where I’d passed 7 Highers (5 at A, 2 at B) as a 16 year old in a very hectic two weeks in May 1967, followed by a 1^st Class degree from Edinburgh Uni at 21… in my career as school teacher where my energy and enthusiasm was recognized as I became President of the Scottish Association of Teachers of History and Inspectors invited me to serve on several national working groups. In due course I became a headteacher, working for over 20+ years as Head of three very different secondary schools in central Scotland, and lately in my retirement, in my 60s, working at Ed Uni to train new headteachers, authoring books that are still used in headteacher training, winning the Costa prize among others for my fictional writing, studying Italian with the OU and self-publishing two novels – one a thriller, one set in a secondary school (shameless plug… you can find me on Amazon if you’re interested!… they’re really quite good!)… but at home, I’d agree at the breakfast table to do something in the house and then forget to do it…. this, of course, is not necessarily a symptom of early onset dementia or we’d be sending men of all ages for brain scans… but anyway, Joan, who’d been keeping notes of my declining memory since as long ago as 2013, suggested I get a diagnosis.

One of my daughters said to me once, in a very frustrated voice that I won’t imitate… ‘You’re such a man!’  It wasn’t meant as a compliment…. I think she meant that I had difficulty recognising my own flaws…  but there was no arguing with the flaws that the brain scan showed: even I could see that large parts of my brain were no longer there. My damaged brain, such a well-used and important part of my life, had become unpredictably unreliable, withholding memories from me on a cruelly random basis. The consultant who gave the diagnosis told me I had high levels of ‘cognitive reserve’,  having used lots of my brain all through my life… this seemed a very unscientific concept but made sense:  my continuing intellectual activity masked my ‘lived experience’ of increasing everyday incompetence in basic aspects of memory.

I don’t know who nominated me for the ‘Lived Experience Panel’,  but it’s been a fantastic experience to work with such talented people with varied interests, experiences and understandings, some with a strong platform in and great experience of the dementia policy field. I learned a great deal from all those on the panel as we pursued our collective goal of contributing our insights from the ‘inside’ of dementia, supported by very able civil servant colleagues. In the 21^st century we are all much more aware that those who were once only objects of care can and should also be active subjects in their own care. Credit is due to the SG that, alongside the more obvious insights of science, medicine and therapy. they wanted policy to benefit from such ‘lived experience.’

I encourage you to support this new strategy and look forward to benefiting, along with the many older people living in Scotland now, and in the future, from its implementation!!  This policy is not just for those living with dementia now, but for all of you here today…. cos I’m here to remind you, whatever age you are now, and in a rather more unwelcome context than our national bard intended, that for a’ that, and a’ that, it’s coming yet, for a’ that!!  .. . but even so to tell you that, for a’ that,  it’s also possible to live well with dementia!   

Thank you!

It really was a great experience to be part of the ‘Lived Experience Panel’ and I hope that our work together makes a difference for people living with dementia, and their families.