Guest blog: Anxious, frightened, distressed, isolated, and sad – the power of dementia

Blurred ambulance

Last week saw the launch of our new dementia strategy – the first step in developing EEAST as a dementia-friendly organisation.

Led by Area Clinical Lead Duncan Moore, the strategy sets out three years of objectives that will look to improve the care and experience we give to our patients with dementia.

Here, Duncan shares his thoughts on why dementia matters – and why the strategy is important to us all.

Our new dementia strategy…why does it matter?

A question for all of us indeed. In simple terms, the strategy sets out some aims for the Trust and for us all as individuals.

We all have some understanding of this disease, but the variants and actions are all as individual as our patients are. And very small, seemingly simple things can actually make a huge difference to our dementia patients; coupled with our clinical knowledge, little things like how we interact and communicate could be the key to improving the care and experience we give these patients.

I imagine many of you will have heard this, or something similar, in conversation at one time or another: ‘it must be worse for the family, as he/she doesn’t understand what’s happening!’ But do we really believe this? Imagine it’s you.

As the disease develops you are told what you have. Memory doesn’t disappear overnight, so you know what is about to happen but you can’t change the outcome. But you worry about what might happen - the memories you cherish, the dates that are so precious, the surroundings that you feel safe in, all slowly vanishing. For me, this would be most frightening thing I could imagine. Anxious, frightened, distressed, isolated, and sad.

Let’s take a second to put ourselves in the mind of someone suffering with dementia…‘The people around me, are they people I know and love? What if they leave me? How will I get home? Where is home? Where do I live? What should I do next? Is this the right thing to do? What if I upset someone, and then I’m left alone? Every day, every hour, every minute I have to ask myself these questions. But why, I don’t know. They tell me I have a disease, in fact they tell me many things but I don’t know what it means.  Why do I worry? Why do I forget all that matters to me?’

All of this is what we believe, and know, a person living with dementia experiences as the disease develops. The format and clinical diagnosis may vary and have a different impact, but the anxiety, the emotion, and the fear are all consistent – and constant.

That’s why we’ve developed a strategy. We are person-centred in our care and culture, and the strategy looks to highlight and expand on this; it looks at where we can develop our skills, particularly in talking and listening, to help nurture and ease anxiety. Which really can make all the difference.

What’s great is that the strategy launch has already got people talking. I had the pleasure of speaking to the executive and non-executive team about it at the Board meeting last week, and we’ve even had media interest in what we’re doing from BBC Radio Cambridgeshire, Heart FM, and the Bury Free Press.

Dementia isn’t an issue that’s going to go away; it’s now one of the greatest challenges facing our ageing society, and, as reported in the media last month, the condition has overtaken heart disease as the leading cause of death in England and Wales. So please, if you can, take the time to look over the strategy and support what we’re trying to achieve. If you’d like to get more closely involved I’d love to hear from you – just email me at duncan.moore@eastamb.nhs.uk.

Published 8h December, 2016

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