“Leadership is the art of mobilizing others to want to struggle for shared aspirations.”

“McLaughlin: Leadership has so many definitions that sometimes that term loses its meaning. How do you define it?

Kouzes: Leadership is the art of mobilizing others to want to struggle for shared aspirations. That part about struggling for shared aspirations may set our definition apart.”

I’ve also been though the motions of detailed study of leadership styles in my own MBA.

But this definition of James Kouzes really struck a chord with me.

This is of course not a particularly impressive ‘leadership style’, one sedentary guy with an iPad mini with a large product placement in shot?

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I have fleetingly thought too about who is the exact target audience of my book.

While ‘Living well with dementia’ is not a ‘self help book’, it is a fact that many people living well with dementia have warmly received the book.

In fact, in the front row in my line of vision to the left, two people sat, a son and his mother with dementia.

It turns out the son found my talk ‘inspiring’, and thanked me, in front of his mother, for saying which he perceived as powerful: that it’s more important to concentrate on what people can do in the present, rather than they cannot do.

And what did I conclude was the driving intention of an international policy plank about living well with dementia?

I concluded that a positive wellbeing is about a person being content with himself or herself, and his or her own environment.

This is not an issue of being drugged up with a ‘cure for dementia’. It is though saying something equally positive about dementia, if not more positive.

I do not consider the Alzheimer’s Show an “event with a buzz”. For me, it was like a wedding of a best friend. I was thrilled to meet Chris, Jayne, Suzy, Rachel, Louise, Natasha, Joyce, Nigel, Tracey, Tony, and Tommy, some for the first time.

And what you see is what you get with them.

Chris concluded, “Living better with dementia would’ve been a better title.”

And Tommy agreed.

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Chris and Tommy live well with dementia.

I agreed too. In a nutshell, ‘living well with dementia’ runs the danger of imposing your moral judgment or ‘standards’ on what living well with dementia is.

For me, living well in alcoholic recovery means not downing a bottle of neat gin when I get up, like I used to do in late 2006/early 2007 when I hit a rock bottom. (The actual rock bottom was when I had a cardiac arrest and epileptic seizure heralding a six week coma in the summer of 2007, rendering me physically disabled.)

But it’s a big thing for me that people who are living well with dementia are actually interested in – and supportive of – my book.

You see, I concede that I don’t live with a dementia yet to my knowledge – though many London cabbies conclude that I do [nicely], when I tell them the title of my book and they see me struggling get into their cab.

Chris pointed out something at first glance very true today – that I didn’t have many friends living with dementia as friends then, when I was writing my book.

Chris is in fact wrong. “Any” not “many”.

Tommy said something curious recently, that it’s ironic that it took an event such as the Alzheimer’s Show in Manchester to bring us all together.

But he’s right. We’re not there for any other reason than to share experiences.

Suzy commented that ‘I get it’. And I do think do, for all sorts of reasons, many of which were quite unintended.

I am currently writing ‘Living better with dementia: champions challenging the boundaries”. It’s going to be a toughie, but I think I can do it.

 

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If only Kate were there too…

Thanks to Caroline Bartle for an outstanding infogram of my book ‘Living well with dementia’

I’m no stranger to ‘infograms’.

‘Infograms’, ‘Information graphics’ or ‘infographics’ are graphic visual representations of information, data or knowledge intended to present complex information quickly and clearly

I first met Caroline in the Alzheimer’s Show in London Olympia earlier this year. She is incredibly enthusiastic about the dementia ecosystem – it’s completely genuine and authentic.

This #tweet suddenly appeared out of the blue from Caroline today.

Caroline is at @3SpiritUKNZ.

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I had the impossible task of trying to summarise my book in 20 minutes flat for the @AlzheimersShow.

But I feel living well with dementia is essentially about a person who’s received a diagnosis being fully at ease with himself or herself, and equally importantly with the world around him or her.

Thanks to Caroline

No one person has taught me more about living well with dementia than Kate Swaffer

When I posted this on my Facebook yesterday

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it was on the back of a joke that Chris Roberts and Kate Swaffer, both friends of mine, had GPS trackers on me.

I intend to tackle the potential beneficial use of GPS trackers for some people living with dementia at significant risk of travelling way beyond their local environment.

And travelling beyond my comfort zone is exactly what happened to me at the end of last week.

I ended up at the Alzheimer’s Show in Manchester, to give a 20 minute skit on my book ‘Living well with dementia‘.

Tommy Dunne and Chris Roberts, bosom buddies, sat together in a little section of the workshop. I could spot they were listening to every word.

Jayne Goodrick asked me a gentle question – unlike the question I asked from Prof Stuart Pickering Brown the day previously,

“I’d like to ask Prof Pickering Brown, but this question applies to the rest of the panel too, how the millions spent on Big Data and identifying genetic factors for Alzheimer’s disease and frontotemporal dementia, like TREM2, can be rationalised in the context of a social care system on its knees, with zero hour contracts and breaches of the national minimum wage?”

I had of course pre-warned the panel that the question would be incomprehensible, as I am disabled.

Jayne said the question was ‘coded’, but Prof Pickering Brown likewise answered in code.

And he took the question well – I had a chance to thank him for all the work he does on frontotemporal dementia, and he asked me to pass on his personal regards to Prof John Hodges.

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John is one of THE leading experts in frontotemporal dementia, well respected around the world in academia.

More importantly, he is looking forward to my new book, “Living better with dementia: how champions can challenge the boundaries”.

Chris especially feels, and Tommy agrees, that a much more suitable title would be ‘Living better with dementia.”

Now that Chris has explained it, I completely agree. “Living well with dementia” implies imposition of your judgment as to what living well is.

And whatever your objective level of living might be, nobody can deny a need to live better.

It took me some time to get it, but I did in the end.

A bit like how the penny dropped with Tommy’s joke about urinating with the door open.

But I loved ‘The Alzheimer’s Show’ as it felt truly as if I was amongst friends – and I met people whom I have only met on Twitter, who were truly lovely : Suzy Webster, Natasha Wilson, Chris Roberts, Jayne Goodrick, Tommy Dunne.

And I met some wonderful friends from before: Louise Langham, Carers’ Coordinator for CC2A, and Rachel Niblock.

And I met some brilliant people who’d been following me on Twitter, such as Tracey from CareWatch.

I phoned Nigel Ward, the Show Director, and he was brilliant as usual: “Why did you phone me Shibley? There’s no signal in here, and I was only in the next-door cubicle?”

Anyway, I’ve been on and off in the dementia field for seventeen years, which has taken me on various ups and downs, including three months on the dementia and cognitive disorders firm under Prof Martin Rossor as a junior doctor at the National Hospital for Neurology and Neurosurgery, Queen Square.

It’s also seen me go via a 2 year 10 months PhD at the University of Cambridge. I was the first person in the world to demonstrate reliably risky decision-making behaviour in persons with the behavioural variant frontotemporal dementia. It’s a finding which has been resilient for the last fifteen years, having been replicated and explained through neuroimaging.

I am not really into ‘co-production’, mainly having seen it being used as a cover for legitimising some people’s pre-formed agendas.

But I have been heavily influenced by Kate Swaffer who received a diagnosis of dementia some years ago.

The contents of my new book, to be submitted by the end of October 2014, reflect mutual interests of ours. Kate is more than a cook, former nurse, brilliant blogger, and advocate for Alzheimer’s Australia.

I am honoured she is a close friend of mine. She is not motivated by any narcissistic twang.

She is brilliant.

She has taught me more about dementia than anyone I know.

And it’s her birthday today.

#KoalaHugs