I’m often involved with stuff going on at Hull Uni. Well last week Professor Esme Monica.Cook, asked if I would mind sharing a survey they’re doing around language used to describe certain behaviours. The survey is titled: “Changes in behaviour associated with dementia – what do people with dementia and carers think about the language used?”
I’ve had long held views about the language used by professionals. My pet hate is ‘Challenging behaviiour’…which makes us out to be at fault instead of others simply not understanding our distress. But I won’t go on about my views as each and everyone of you will have your own.
They’ve already asked professionals for their views, but now, quite rightly, The survey wants to hear from people with dementia AND also supporters, so pleeease complete so they have as many views as possible. The survey will be open for around 4 weeks until 14th February, but the sooner you complete the sooner you can forget about it 😂
Here’s the blurb from the University ……
We are interested in gathering the views of people with dementia and carers on the language used to describe changes in behaviour in dementia. We would be grateful if you can help us by completing this short online survey, which should take around 15- 20 minutes to complete.
There can be changes in behaviour associated with dementia that others find difficult to understand, for example aggression, agitation, wandering, verbal outbursts, delusions, hallucinations, apathy and anxiety.
There are several different terms used to describe this, with differing views on how helpful or not these might be in the context of providing and receiving care and support.
This survey seeks to find out which term people with dementia and their supporters most prefer. The most preferred term will then be used as the title for a best-practice tool-kit to assist health and social care services in providing good support to people with dementia and their carer(s).
There are no right or wrong answers – we just want your opinions. Your responses to this survey are anonymous. Please also forward this email on to others who can help i.e. other people with dementia and carers.
If you have any questions or would like further information, please do not hesitate to contact us on: firstname.lastname@example.org
Click on this link to take part in the survey……
If people don’t know what we think how can we change what they think and the terms they use…..?