My dementia trumpet call

trumpet callYesterdays blog has seen me get some terrific support, some criticism, and also a lot of people asking to share it. It started as a Creative Expression project for uni, and has been extended and added to since I began the list. My lecturer has asked to use in her courses in the future, with my permission and proper reference to me of course. It needs further editing and modifying, as well as three more things to be added to the list. On top of that I believe it requires detailed clarification of why I have added things to the list, and alternatives for carers and professionals to use or do instead.

It is a work in progress, and based on my experience of living with dementia, as well as the voices of hundreds of other people living with a diagnosis of dementia that I speak to online, via email or in groups globally,most of us feel this way. We all discuss the frustration of people who are not diagnosed, saying they are living with dementia. We almost all feel that many of the ter,ms and words like sufferer are disabling and disempowering, as well as offensive in the same way as the word retarded. Yet some others still feel a right to tell us our feeling are wrong, and we have not right to make claims or requests about how we would like to be spoken to. Of course, to those I may have offended and upset, I sincerely apologise. However, people with dementia are very entitled to speak out about what offends or upsets them, about how they wish to be treated or spoken to, and about how we feel.

21 thoughts on “My dementia trumpet call

  1. Hi Kate, I love the list you posted on “what not to say to people living with Dementia” and with your permission I would be honoured if I could pin this up on our board in our Special Care Unit because it is a great educational tool for staff who don’t have the concept or experience in talking to people living with Dementia. Cheers. Cath.


  2. Pingback: 20 things not to say or do to a person with dementia | Creating life with words: Inspiration, love and truth

  3. Nobody knows better than the person dealing with Dementia!!! Anybody else doesn’t know what they are talking about from experience. Go for it Kate and know you are blessing others lives who are dealing with it! Blessings and love….VK 🙂


  4. Don’t apologise for offending people with your opinions and views. Anyone who disagrees with what you have written must be an insensitive baboons!


    • Oh Sandra… feeling you rlove, but of course others can disagree! Life’slide that, and even a landslide election win is usually less than a 50% vote! I feel honoured so many do agree with me, and thrilled I can represent the voice of other people with dementia.


  5. I can’t believe you’re getting criticism. this is a common exercise i do with staff – they find it easy to come up with a litany of malign phrases, expressions, the sort of language of convenience of the staff room passed down from generation to generation and they can’t see how dehumanising some of it is. The second part of the exercise is to get THEM to think of an alternative phrase to use – they find that much harder – might be worth putting that back on those people who request alternatives. Half the stuff can just be missed out completely – it’s superfluous and rightly comes across as gratuitous insult. Good luck Kate



    • Haha, thanks Damian. Of course like anyone else who writes or speaks publicly, not everyone will agree with us! Such is the beauty of life, and in fact, it really helps me be more thoughtful (hopefully!)… and thanks for joining the conversation here.


  6. hello darling one, what a wonderful compliment to you with this blog for your lecturer to want to use it. well done you must be very chuffed haha with that. when next we meet in june, i must get you to help me put a picture up of me on here instead of what i have thats boring hahah, love you talk soon. stay well xxxxxxxxxxxxxxxxxxxxxx


  7. I agree with you. A person may disagree with you but can never tell you how you should feel about something and whether or not you are entitled to talk about such feelings. I suspect that some people may feel offended because your words go against a very pernicious stereotype: people diagnosed with dementia are NOT entitled to think, speak and decide for themselves.
    Saying otherwise is as subversive and revolutionary as Rosa Parks’ words of defiance “I’m tired of being treated like a second-class citizen”.
    And thank God for such defiance!
    Keep up with the good work.


  8. so true Kate so glad you still have the ability to do what you do sadly a lot of mine have gone and I got exhausted trying to make lists I started but abandoned a project like yours so thank you so much it will make my advocating easier with this list compiled it’s a win win for us all


You are very welcome to respectfully join this global conversation.

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.