One of Ken Howard’s 12 rules for living with dementia in his Whose Shoes? guest blog

When I launched my website five months ago I wanted its home page to reflect who I am.  I thought about this and came up with my three tabs: Writer, Campaigner, Mum.  Strictly speaking, if my different hats were placed in order of priority, Mum would come first, but then the rhythm created isn’t as good, so I decided to go with the musicality of the syllables.   Besides, regardless of the form the words take, they sum me up.

Were I to develop dementia and be forced to live in a care home my home page could be very different.  My three tabs might well read: Pippa Kelly, Dementia, Sometimes Aggressive.

It was a chilling point, well made by Sally Knocker, one of the speakers at a dementia conference I attended this week, to show how the fact that you have the condition (as opposed to the condition itself) strips you of your identity in the eyes of others.  Sally is a consultant with Dementia Care Matters, an organisation that provides support, training, resources and research throughout the UK.

Ken Howard & me at another (warmer) conference

The previous day I’d been fortunate enough to meet, albeit too briefly, someone about whom I’d read enough to think that I’d like him.   Ken Howard’s Twitter profile describes him as an old biker (still riding), a sci-fi fan, a granddad, a history and music lover and a free thinker.  I can’t argue with any of that, but having met him I’d add that he’s also a force of nature and (I hope he won’t mind this) a gentle giant – with a barrel-load of common sense resting on his broad shoulders.  Needless to say, I liked him. Ken Howard, as his Twitter profile also states, is “living with and fighting dementia as a way of life”.

I had been introduced to Ken – both through the wonderful global cocktail party that is Twitter and in real life – by Gill Phillips of Whose Shoes? fame, and as the three of us sat in the London sunshine and talked about dementia’s impact on Ken’s life I was struck, once again, by how much discussions around living well with dementia have to tell us about life.  And how, so often, the key lies in keeping things simple.

Ken explained how he initially became very depressed after his diagnosis eight years ago but was pulled around by a realisation that, though his life had changed and he was, in that sense, a different person, he was (in another sense) still the same.  Or, as he put it in his Whose Shoes? blog for NHS Change Day, “Nothing changes but everything’s different”.    This is true, and expressed as such seems pretty obvious, but a dementia diagnosis is also, as Ken says, “a mental death sentence (only if you allow it to be)”.  I suspect that it’s one of those rare events that you can only really begin to comprehend if it’s happened to you.

Ken, like so many others in his situation, wasn’t offered much in the way of support at the time of his diagnosis.  He had a useful chat with someone from the Alzheimer’s Society but after he’d explained to her that his dementia made it virtually impossible for him to read, she then left him with a pamphlet.

What Ken actually wanted, he now realises – and what he calls for as he tours the country speaking out about his experiences with, and coping mechanisms for, dementia – was an immediate post-diagnosis chat with someone else who is living with the condition.

How simple is that.  How easy.  Time and again those of us who come together to share our passion for improving the lives of people with dementia find ourselves declaring, as we stumble upon something constructive, that it really isn’t rocket science.

The same could be said of many things in life.  The best ideas are, after all, simple.   Yet if they were that simple we’d all have thought of them, pocketed the proceeds of our ample brains and jetted off to the Bahamas.

In my last blog I spoke of the belated recognition that the best dementia care is person centred – that is, seeing the person first and then the dementia, and how, put like that it seemed so obvious that it was extraordinary that we didn’t all automatically do it.  But we don’t.  Humans are contrary beings, we often act en masse quite differently from how we act one-to-one, following the herd, wandering around in circles for some time before one of us finds the gate.

I think to a certain extent that this may be what we’ve been doing in terms of our approach to dementia.   The amorphous mass that is society doesn’t properly understand what it is and, as with most things that aren’t understood, dementia has become an object of fear – and because it’s feared, it’s shied away from.  Now, slowly, with the help of people like Ken – and Kate Swaffer and Chris Roberts and countless others who are living with the condition, speaking out and, most importantly, showing the rest of us that they’re normal, things are finally beginning to change.  Hence, as I said at the time, the tremendous importance of two people with dementia being interviewed by the veteran broadcaster John Humphrys on Radio 4’s flagship Today programme – and heard by 7 million listeners.

Sally Knocker was speaking at a conference on reminiscing in dementia care hosted by the European Reminiscence Network, at which 12 countries were represented.   During one workshop the wife of someone with dementia spoke of how she and her husband had begun to withdraw from social contact after his diagnosis, and how important attending a reminiscence group had been for the pair of them.

“Going to the group helped both of us articulate what being a couple – and being individuals – meant to us.  The group gave us the feeling that we were fun to be with; the facilitators helped people to find their place.  It was profoundly moving”.

Kate explained how her husband’s dementia had produced a “huge sense of loss” in her and how the group helped her and her husband to reconnect.   “It was something to do with shame,” she said, “and the power of recognition that melts the shame”.

Shame, fear, loss – all such sad and negative emotions that combine to produce the stigma still attached to dementia.  Help to remove those words, those unhelpful labels – to show that they’re not the right ones to use – and perhaps we can start to get rid of the stigma.

Ken has a shelf life (his words) and there’s an urgency and a passion about what he’s doing – he says he loves spreading his key messages at Whose Shoes? sessions around the country. He may not be able to read and write very easily any more but he can still talk.  Fluently, cogently, with shedloads of sense.   If we want to improve the lives of those who are living with dementia, we could do a lot worse than to take heed of those who like Ken (biker, granddad, free thinker) are speaking out about their condition and how they’d like to be treated.

After all, they know what they’re talking about.   Perhaps it’s us, the rest of society, who are finding it hard to listen to what they’ve got to say.

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This Thursday (3 July) Gill and Ken are taking part at an Innovation in Dementia event at the Barbican, London: http://www.openforumevents.co.uk/dementia-innovation-programme/ 

This Friday (4 July) they are on a live WebEx hosted by the NHS transformation team, talking about their NHS Change Day campaign and the impact it is having: http://linkis.com/changeday.nhs.uk/fil/EYZGC  

Here are Ken and Gill at their “Google Hangout” at Expo 2014: http://www.youtube.com/watch?v=haq1mwEdp_8