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Dementia Care: Life History & Life Story
The first building block for good care for those living with a dementia is to know their story, preserve it and when the time arises, use this privileged knowledge to help the person maintain their place in the world, their dignity and their personhood
Dementia caring is a much specialised form of caring, some would even go as far as to call it an art form. When it is done well and consistently I am one of those people. Too often however we see a form of care that is nothing short of custodial, worse we see organisations claiming to provide specialist dementia care who provide nothing more ‘specialised’ than an attractive website, nice carpets and few red doors!
The art of caring for someone living with a dementia is in the depth of the relationship achieved between the provider and the recipient. The mark of a good provider is how far they are prepared to go to achieve this art form – consistently.
Knowing the person in your care – who they were, who they are and who they will be is the name of the game. We can (and will) discuss technique, models, training and a host of other 'tools' but at the end of the day, it’s how far the organisation and the individuals within it are prepared to go to develop relationships.
Think for one moment about your partner or if you are single like me, your work colleagues or close friends – how did they become important to you? Two questions that seem to pop up without fail when two strangers meet is “where do you live?” and “what do you do?”.
In communication psychology we are quickly trying to establish primary commonality and secondly we seek to understand the power ratio or where we fit in with life’s little hierarchies.
Our answers to these seemingly innate and throw away questions often set the tone for the rest of the relationship, often preserving the status quo across decades. In our answers we have a chance to do two things – reveal our real or ‘true’ selves but also to begin to reveal our constructed or assumed identity.
As we go through life we take on many roles, son, brother, friend, husband, father (substitute the feminine) but we also inherit roles such as student, worker, colleague, bereaved, divorced etc. and each of these roles, some our birth right some brought about by the twists and turns of life allows us to display different facets of our true and constructed identity.
I am certainly not the same person I was 20 years ago, less still who I was at 21 – but if we met today the person you see in front of you would be assumed as being the true me – and if you happened to meet the me of 20 years from now, in your care home , with probably a diagnosis of dementia of the Alzheimers type – how would you plan to care for me? Which me would you care for…
A relationship can only be built by learning about and then adjusting to the life history and the life story of another. These, as I hope you see from the proceeding, are very different things.
At 19 I lived in the North East of England, I was from a housing estate. I left school at 16 with only a few CSE’s. I was rough and ready.
Now I live back in the North East but have spent 30 years in the South, been a research fellow at the University of Oxford, have a PhD, published books and papers and I am seen as an expert in my field.
When you meet someone living with a dementia for the first time what do you see? Do you see someone adopting the identity of the ‘best they can be’ to cope with their current situation or are you one of the true artists who sees beyond the mask and see’s the real person?
Next time we will look at life history, how we collect it, how we record it, who contributes, how we use it and significantly how we combine these facts with a life story approach to maintaining wellbeing.
Till next time
Paul Smith – Dementia Care Expert
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