‘He wouldn’t understand’
‘She would get upset’
These are phrases I have often heard when questioning if an individual with a learning disability has been told of their diagnosis of dementia. Whilst it is natural for anyone to become upset after such a diagnosis, it is often the case that we just haven’t explored how much the person does understand about dementia – whether because of a family member living with the condition or a peer who has had a diagnosis. Indeed, with a longer life expectancy enjoyed by many adults with a learning disability it is increasingly likely that more people will know someone with dementia, potentially at a younger age if friends have Down’s syndrome. Yet still, we don’t talk about dementia enough.
There is a lack of accessible information to share about dementia, so even after a diagnosis someone with a learning disability often has only misinformation. Andrew, now an expert advisor to SquarePeg Training, initially believed that he would change overnight when he was told of his dementia diagnosis.
Let’s talk about dementia more with people who have a learning disability. With contributions from actors with a learning disability, Jenny Diary is an award winning free pictorial guide about dementia. In it, we acknowledge the challenge of talking about dementia, but emphasise the importance of individual approaches and the right to know of a diagnosis in a manner appropriate to the person. Of course, we give examples of how it may be used in practice too.
Jenny’s Diary is a free downloadable publication available from SquarePeg Training here.
With thanks to collaborators around the world who share our passion for accessible information on dementia, translations are available in French, Norwegian, Mandarin Chinese, Italian, Dutch and German.
To find out more about SquarePeg learning disability and dementia courses, visit here.