A new way of conceptualising ‘dementia friendly communities': the elephant and the rider

“An even clearer way to think about Steering behaviour is to take
Jonathan Haidt’s image of an elephant and a rider.34 The elephant
represents our basic automatic responses and habits. The rider
is our goal-directed and controlled decision-making capacity. The
rider is certainly not an all-powerful master – it is no easy thing to
guide the elephant. In fact, some of what the elephant does we
cannot control very easily at all. For example, if the elephant is
hungry he may do nothing we want. Other aspects of the elephant’s
behaviour we can train over time and guide fairly well once we have
learnt how. But most importantly ‘we’ are not simply the rider that
sets goals and gradually masters the elephant. We are the elephant
too, and Steering our behaviour in certain directions means training
ourselves through repeated practice as well as setting goals.
To complete the image of elephant and rider we need to add the
cultivated forest through which the elephant walks. This represents
the social and physical setting of behaviour. Changes in this setting
affect how the elephant behaves and what he is able to do. Nudging
works by changing the layout of the forest. Steering can work by
either changing the forest, or changing the guidance of the rider.
Both these kinds of Steer can help train how the elephant behaves.”

(“Steer” by Matt Grist, RSA, June 2010)

The starting point is that, as a society, there can be enormous stigma and discrimination towards persons with dementia. It’s therefore not good enough to have a person with an early dementia on a panel, with an illusion of participation. Dementia friendly communities, whilst a great start in policy, may need some form of disruption to bring about a total change in gear towards dementia-led communities.

I view getting corporates to act in dementia-friendly ways is a ‘nudge’ manipulation of the market to change behaviour through market incentives. But I feel it’s inherently passive.

A much better approach would be instead of focusing on the elephant would be to look at what the rider does. A person with early dementia might be empowered in looking at what cognitive abilities he or she still possess, to the benefit of leading projects that he or wishes to engage people with.

This would be an active process, and could involve engagement of persons with an early dementia with what they feel about the world about them – making them active members of the community, not recipients of a market ‘kind to them’.

Looking at how persons with a dementia could lead decisions collectively in communities, with appropriate and proportionate oversight, is altogether more ambitious. This policy shift could instead be quite inspiring, rather than simply ‘befriending’ a person with dementia.

I gave recently an example of a person leading an initiative in the community. This was Chris Roberts’ idea of running a café for people with dementia, so that they could have some ‘me time’ and talk about issues which they considered important. (This was in another blogpost on my blog here.)

There’s perceived to be somewhat of a taboo in discussing with persons with dementia how the brain works, and yet the focus has been to explain to people without dementia what dementia is. It should be rather a case of individuals becoming experts in their own medical health and illness too. It should therefore be a case of persons with dementia engaging with public to explain how their condition affects their lives, and how their understanding of their condition as people contributes to a plural scientific dialogue.

This nature of information asymmetry about dementia – between persons with dementia and those without – necessarily invokes a difference in social power and status, but improved social inclusion could be a fruitful first aim.

I think part of the issue how persons with early dementia can be empowered into leading on decisions in their community involves some reflection of how their brains work (rather than not work) for them. By concentrating on strengths of existant cognitive abilities, the rider can be given the right tools to be in charge of the elephant.

Befriending still runs the risk of tokenism, which I very much worry about.

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