Risk v. Silent Harms

riskI’ve been toying with the idea of writing a blog about risk and people living with dementia for some time now, and a recent Times article with the provocative headline, “People with dementia told to start living dangerously” provided the impetus I needed.

The fact that these nudges often occur when I’m deciding on a topic strikes me as positive: hardly a day goes past now without dementia cropping up in one form or other in the national press and shoving me gently in the ribs.  Good.   It means we’re talking about it, airing the subject, debunking myths, blowing away the stigma and raising awareness.

The Times piece turned out to be about Neil Mapes, founder of Dementia Adventure, a social enterprise I’d already encountered via the wonderful global cocktail party formerly known as Twitter.

This award-winning organisation, whose work is evidence-based, came about as a result of Neil’s frustration at the sedentary activities offered to people with dementia, often leading to a downward spiral of low energy, low self-esteem and loneliness.  Instead, he wants to connect them with nature, to give them genuine choices and a sense of adventure.

“We know that as little as five minutes outdoors lifts your mood and can improve self-esteem,” explained Neil. “Walking for 40 minutes three times a week boosts the parts of the brain that shrink with age and promotes the growth of new cells in the brain”.

How life-affirming is that.  And, as I’m beginning to find myself repeating as if it were some sort of mantra – and no less true for that – how simple.

Lucy Harding, a director and founder of Dementia Adventure described how they took two men who are living with the condition, plus one wife and a son, on a Cornish sailing trip.  “They had the most wonderful time.  Both men had a connection with the sea and they were going home, going back to something they loved and which they possibly thought they wouldn’t do again”.

I was struck by the phrase “going home”.  In a broader sense Lucy could be describing the two men reconnecting with their pre-dementia selves, with who they are.

A Department of Health report encouragingly titled, “Nothing Ventured, Nothing Gained,” explores the role risk plays, and should be allowed to have, in the lives of those living with dementia.  In doing so it drills down into people’s individuality, the attributes and skills they possessed before they developed the condition and how these can determine the best way for them to live with it.

What we are talking about, as the paper acknowledges, is none other than our old friends person-centred care and life story work.  “Lives, like stories, have a trajectory through time,” says the report.  “What comes before affects – and to some extent determines – what happens next”.

Of course it does.  It’s not rocket science (another phrase fast becoming a mantra among the dementia community of which I now hope to count myself a member).   One person’s idea of unacceptable risk is another’s raison d’etre – take away the element of risk in someone’s life and you take away part of his or her self.

These stealthy thefts of identity are what Professor Charlotte Clarke of Edinburgh University calls “silent harms” – when efforts to safeguard people with dementia compromise other aspects of their wellbeing. This can lead to them being, in a chilling, rather Orwellian phrase coined by Canadian journalist and author Dan Gardner, the “safest humans who have ever lived”.

The Danish existentialist philosopher Soren Kierkegaard, who had an electrifying way with words, expressed the phenomenon of over-zealous caution in even starker terms.  “To dare is to lose one’s footing momentarily,” he said.  “Not to dare is to lose oneself”.

It’s this aspect of risk – its key role in a human’s free will and the part that it plays in our identity through the choices we make – rather than its place in ‘elf and safety, that I find really intriguing. For it’s beginning to seem to me that our approach to this element of risk is yet another example of how all roads travelled in best dementia care lead back to person-centred practice.

Of course, the idea of putting vulnerable loved ones in risky situations – whether physically dangerous or socially embarrassing – is difficult.   Author and broadcaster Sally Magnusson described this very well in a speech I heard her give earlier this year.

Sally’s mother Mamie Baird was a journalist and a superlative writer; even when her dementia was well advanced she retained her keen interest in words and her ability to pun and spell.  Sally asked molecular neurobiologist Dr Frank Gunn- Moore why this might be, expecting him to launch into a long medical explanation.  Instead he simply replied, “Because words have been the essence of your mother all along”.

To take Mamie’s words away from her would be to rob her of herself.  So when, in the advanced stages of dementia, she insisted that she wanted to give the address at a friend’s funeral, her daughters set aside their misgivings and Sally wrote a speech for her mother to deliver.

“I knew we were on the edge of the possible here,” writes Sally in her book, Where Memories Go.  “But I wanted so passionately to give you (Mamie) the chance to be yourself and feel the adrenaline of performance pumping through your veins again”.

The gamble appeared to pay off.   Mamie delivered the speech like the old pro she was, “revelling in the attention of dozens of friendly mourners” and making it to the final sentence without a tremor.  But then, to Sally’s horror, Mamie turned over the last page and started the speech all over again.

As Sally sat, rooted to the spot, embarrassed for her mother and overwhelmed with guilt at placing her in such a risky position, the congregation erupted in spontaneous applause.  Mamie was thrilled.  As Sally later said, “The problem wasn’t hers, but mine”.

It is all of ours.  Mamie was among friends who understood her; if we in the wider community – and, more importantly, those running and working in care homes and other facilities provided for, and used by, those with dementia – had a better understanding of the condition, we (and they) would be more forgiving of people repeating themselves, forgetting their words, stumbling over their change or even starting to shout and rant.

And we would (or certainly should) do all that we can to help them live as well as they can – including helping them to retain their individuality, their personality, their choice and their chance to take risks for as long as they want for as long as they can.  It’s hardly rocket science, is it?

3 Responses to Risk v. Silent Harms

  1. Matt Burgess 12th March 2015 at 10:11 am #

    Wow! Think you have nailed it Pippa! (well it’s hardly rocket science is it?!). You explain this in such a clear, thoughtful and engaging way.

    ‘Positive risk’ and ‘adventures’ are what make our lives worth living. An adventure can be simply getting out into a garden, or going for a walk, having a holiday again with your partner or going white water rafting! All of these things are possible for people living with dementia. We know this from experience as we have enabled all of these things to happen for our past clients.

    This is the ‘stuff of life’! Where would we be without it?

    – Matt Burgess (Dementia Adventure)

    • Pippa Kelly 15th March 2015 at 11:09 am #

      Many thanks Matt. And how right you are in saying that “adventure” means many different things to different people. Keep on with the tremendous work at Dementia Adventure.

  2. Care Focus (South West) CIC 26th August 2016 at 10:38 am #

    Thanks for an excellent and inspiring article on risk management. We provide a positive risk management training course to social care providers and attendees have found it very useful.

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