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Dementia awareness week took place a few months ago and as in previous years the week was filled with lots of activities involving different people, services and organisations. In NHS Tayside our awareness raising involved pushing around trolleys with biscuits and drinks for busy acute hospital staff to provide ten minute talks about dementia. Other more formalised education centred on the awareness week focus upon younger people with dementia and stigma.
In Tayside we have been promoting our Tayside Dementia Forum. The group aims to bring multi-disciplinary professionals across Tayside together to share best practice and promote the positive aspects of supporting people with dementia. Our forum also identifies areas of practice we would like to improve and the opportunity to reflect on our own practice.
For dementia awareness week, we used a digital platform called ‘Mentimeter’ to ask our forum members to share their positive experiences of supporting people with dementia. I was delighted to read the responses, one of which stated “Joy”. This really made me think about my own experiences of coming back to work in the NHS during Covid and the challenges that everyone had to face. Despite all the difficulties the lock down posed, it was heart warming to read about the enthusiasm and rewards recounted by staff. Other comments included “making a difference in the moment” and the development of “trusting therapeutic relationships”.
One particular comment that made me reflect was “learning new strategies to support my own family member”. It struck me afresh that dementia affects professionals on various levels: physically, psychologically, socially and emotionally both at work and in our private lives and how dementia is all around us. This is a theme which I will take back to our forum to explore. Sometimes it’s easy to forget that staff may need help and support too.
All our forum members seemed motivated and spoke about their enjoyment in advocating for people with dementia and the sense of pride which accompanied this. They went on to say that people with dementia can often be our most vulnerable group and their voices can become lost. It’s so important to support people to live well with dementia and enjoy daily activities.
You might be thinking, how does this link to the awareness week topic of younger people and stigma? The forum members comments lead me to me reflect on a reminiscence project I was involved in many years ago when I found myself supporting three people under the age of 60 who all had a military connection. During my regular visit to one gentleman, I enquired as to how he was, to which he replied,
“I was ok until you arrived and reminded me I had dementia”
This was to be a fundamentally important learning opportunity for me. What was the impact of my practice and how could I lessen any distress or stigma that I might be inadvertently causing? If anyone had asked me if I thought I was positively supporting this gentleman to live well, I would of course have answered yes. But was I?
So, rather than focus on what problems he might be facing or talking about dementia, we decided to have a day out to live well and not focus on dementia and the issues that can arise. The gentleman, myself and two other younger people with dementia (who all knew one another from a support group) headed for the Secret Bunker in Fife. Before we even entered the building a conversation ensued about the vehicles outside. We discovered the gentleman had worked on a similar vehicle during his national service in Belize. The visit also generated stories about the local area and I can honestly say I think this one of the most fulfilling days of my career. There was much laughter, gentle banter and the creation of something special. What did I learn from this? I learnt that small actions, doing things differently and really listening to people can make a huge difference.
A few years later I visited this gentleman in the care home where he then lived. At his bedside was a photograph of us all standing outside the Secret Bunker. It made me realise that getting to know people makes a difference. It made me realise how as professionals, we have the potential to effect peoples’ lives in a truly meaningful and purposeful way. We must see the person and take a little time and effort to try to provide meaningful person-centred care. We are privileged to work with people with dementia and we can, in so many ways, help to reduce stigma and promote living well. We must take any opportunity to facilitate what truly matters for each individual.
From now on, I will keep this reflection close when I am supporting people with dementia. The gentleman’s comments grounded me and lead me to reflect at a depth I don’t think I could have without his honesty regarding feeling stigmatised by my visits. I will close with a quote from one of our forum members during Dementia Awareness Week. We asked members to provide an example from their practice as to the positive impact they have had on a person with dementia. I think this summarises my reflection rather well.
“Sharing moments of emotional connection”
Contributor
Dr Suzanne Gray
Alzheimer Scotland Dementia Consultant (Nurse)
NHS Tayside
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