Thursday 19 October 2017

Dementia is not 'one-size-fits-all' disease



I’d like to talk to you about dementia.  And the “danger zone” Carers, Health Practitioners and Campaigners fall into.

When you deal with or experience dementia through loved ones and clients you start to believe you’re an expert by experience.  You almost become closed to the idea that you can learn anything new or experience anything more – as though you’ve become hardened to the emotions, beliefs and experiences. That you can’t see beyond the dementia to the person inside.

I’ve seen so many professionals assert that all dementia patients feel pain related to the illness or that the person is losing their appetite because of their dementia

Dementia is not a 'one-size-fits-all' disease

What you might experience or know about dementia may not be what your neighbour experiences or knows.  What your loved one with dementia experiences may not be the same as someone else’s experience of living with dementia.

The reason?

We are all different – chemically, physically and personally (memories/experiences/life journey).

How MCI affects my brain and life may not affect the next MCI person I meet in the same way.

How dementia affects my Nana might be completely the opposite of your own experiences.

Not everyone fits the mold.

I have seen so many professionals, quote Relationship centered care or Person Centered Care.  Treating the person as an individual. Yet they each in turn only react to their own experience and understanding.

So, little is really understood about Dementia and how it affects us – research is relatively young in comparison to other illnesses such as cancer – Yet dementia remains one of the biggest killers in the world.  It is the only leading cause of death that we can’t cure, prevent or slow down.

There is still a lack of understanding on what it takes to support a journey with dementia, it is far from "plain sailing".

If you become too blinkered you can’t support others, and you can’t be an expert by experience unless you open your eyes and accept that.

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