Learning and discussion at Irish in Britain
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Zibiah Loakthar our Cuimhne Coordinator writes:
We may know that dementia does not just affect older people. We may know that there are over 40,000 people under 65 diagnosed with dementia in the UK, and very likely more who have not had a diagnosis. We may know that one in six people over the age of 80 have dementia. And we may also know how to turn this around, glass half–full in hand, to say five out of six over–80 year olds do not have dementia.
We may have some understanding of why a person living with dementia may keep repeating themselves, why a person with dementia may not show much interest in the food in front of them, why a person with dementia might look in the mirror and not recognise the stranger staring back. Why one person living with dementia may become more shy, while another person with dementia may become more extrovert, why one person with dementia may behave quite differently to another person living with dementia: that different forms of dementia may affect each individual differently and when you have only met one person with dementia you’ve met one person with dementia.
But however much we may know about dementia, none of us have all the answers about how we may take individual and collective action on tackling social exclusion and social taboos and support people in our community living with dementia, family and carers. There is so much more talking to be done, more ideas to be thought of, more action to take!
Understanding that there is always more to learn, especially from each other, and also to introduce our new team members to our Cuimhne work, Irish in Britain held a learning and discussion afternoon this week for all our staff team members. Discussion can broaden our understanding, spark new thinking, and strengthen our resolve to promote social inclusion of people living with dementia, their families and carers.
Crunching through red peppers, tomato and walnuts, rather than the usual biscuits, biscuits and biscuits, and with inspiration from Cuimhne Patron, Dr Mary Tilki, our team members have gained new understanding about dementia, discussing different case studies and new food for thought:
“Surprised and heartened to hear that emotional memory can remain even when there is significant cognitive memory loss. Really useful to know this in terms of staying in connection with someone whose memory is impaired.”
“odd behaviour is an attempt to communicate.”
“I was shocked about the fact that dementia is more than just losing one’s memories, but can lead to spatial confusion and an inability to see food and drink. I also didn’t know there were so many different forms”
“What a powerful session, it helped me appreciate how many different ways dementia and memory loss can be experienced and expressed. But it was also really good to learn how much difference even some small practical steps can make to those living with memory problems.”
“I wish I had had all, or even some of this knowledge when my Father was alive – it explains so much of his behaviour that we as a family found unfathomable, distressing and even sometimes scary. How different it could have been if we had understood…”
Well, understanding, thinking and discussion is important where it leads to action!! As a team, we have decided on some new individual and collective actions to take, starting here in our own building space – please watch this space!
Irish in Britain is pleased to facilitate learning and discussions meetings on understanding dementia for our member groups across Britain. Our approach is a facilitatory, positive and empathetic. We encourage reflection but also help groups to develop plans to translate reflection and ideas into simple practical actions. Please contact champions@irishinbritain.org if you are interested in hosting a session! We are happy to work with groups new to understanding dementia as well as with member groups with considerable expertise who are looking to deepen their understanding and develop their commitment to promoting dementia inclusion even further.
Cuimhne (pronounced “qu’eevna”) is an Irish word meaning “memory”. The aim of our learning and training sessions are to encourage a different way of thinking about memory loss/dementia. It is about challenging contemporary notions of people with dementia and focussing on ourselves, how we think about and behave towards people with memory loss.
Because of the ways in which dementia is viewed in society, those who experience memory loss can be stigmatised and deprived of their rights. This is not necessarily negative and in many cases is well–intentioned and kind. However, it can be disempowering, demeaning and deskilling for those with memory loss. Our training is an attempt to put ourselves in the shoes of people with memory loss/dementia and their carers, to open our hearts and minds and to welcome and retain them in our community.