How Important is the language professionals use ?… I need your help!

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 ……

Dear Sir/Madam

 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:

 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…..?


About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

9 thoughts on “How Important is the language professionals use ?… I need your help!

  1. Wendy, I love your blog, and have learned wonderful things from you. I looked at the survey with interest, but decided not to participate. I avoid sharing my life with Google as much as I can. Also I think the premise is mistaken. I don’t think those with dementia and their caregivers necessarily share the exact same needs regarding language, but they/we are apparently being grouped together.

    One is outside looking in; the other is inside looking out. I suspect that the use of language will be seen differently depending on the view, and the most effective use of language might be one way between/among caregivers, and another way between a caregiver and the person(s) they are caring for.

    Both my parents had dementia: my father’s was clearly Alzheimer’s, my mother’s was vascular. Of course I fear for myself! I have enormous respect for you and your work!

    Personally I would love to know what language YOU would prefer, and possibly something about the context. For example, the word “challenging,” which you take to be critical of you, I would take to simply represent my difficulty in understanding how to behave in the most useful way. However, I imagine using it only in discussion with others, not TO you. You are being who you are (and doing it wonderfully, to the great benefit of MANY!). What’s challenging is not YOU, but knowing how best to interact with you. If you do not want me to acknowledge to a fellow caregiver that it is “challenging” to do well by someone with dementia, what language would you want me to use to express that thought? It is not YOU that is the challenge, it is dementia and how to support someone living with it. Which will surely vary from person to person.

    I would SO like to participate and see the results of the survey, but not through Google. I hope you will be reporting some of the results in your blog.

    Liked by 1 person

    1. Yes, that’s why they want carers and people with dementia to participate to see the different views. We live these parallel lives and rarely meet simply because we are on different sides of the wall. I’ll certainly be reporting back as they’re going to let me know the results. It will be an interesting read for sure! 🤗x


  2. Hi Lesley

    Thank you so much for the very tasty lunch today along with your company. It was lovely to be able to chat with Marta too. She has done so well to pass her exams while coping with a very stressful year.

    While we did the washing up tonight I asked Brian if he would like to talk about why he didn’t want to go to the day Centre, but he wasn’t very forthcoming. Chris thought he might be mixing last week’s visit with the loud music experience on Monday, but after talking to him I don’t think this is the case. Brian has never found talking about feelings easy and he doesn’t now have the vocabulary to express them. I think it may be what we were talking about – a square peg in a round hole, so not feeling he fits in to the scene. I asked if he talked to any of the others and he said “not very much” – in other words, no. He doesn’t make friends because he doesn’t take an interest in other people and what they do, so he is not good in social situations (never has been). He’s quite happy with his own company with me around most of the time. He also likes his routine and is very averse to change. I don’t know what could be a workable answer. What I thought was to be his care plan assessment next Wednesday is not – it’s someone from social services coming to talk about the Fordbridge Centre, which I thought was settled (though it isn’t now). Who does what and when is very confusing and they all seem to come under the umbrella of the Spelthorne Locality Team – how”s that for a meaningless and unmemorable title?

    Must go to bed now! All the best to you and thanks for your support.

    Sue xx

    Sent from my iPad


    Liked by 1 person

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