20 things not to say or do to a person with dementia

PowerPoint PresentationThis is a slightly revised and updated list of tips from the one I published here last week with 17 tips. The day after that I also wrote one called My dementia Trumpet call, explaining a little why I’d put together a list in the first place. Of course, there was some angst from a couple of people about some of my points, but overall, mostly consensus, especially by people living with dementia. If it is possible to positively impact the life of even one more person living with dementia, then it would not matter how many people without dementia had disagreed with me.

I presented this new list to two groups yesterday, one a group of professionals at a Diversity Forum in Ararat yesterday morning, and then to a group of mainly family carers and people with dementia at a YOD support group last night, as well as a few staff working in the area. Everyone I spoke with about the list agreed with, and many asked if they could print it off, including some of the staff working there and in aged care in Ballarat. So, here it is, as a jPeg to make it easier for you! I have also attached an already UPDATED and revised PDF here with a new term not to use suggested by Leah (thank  you Leah) 20 things not to say or do to a person with dementia_Kate Swaffer_ June2014 and I will update the jPeg that was below soon, with the help of my BUB!

 

70 thoughts on “20 things not to say or do to a person with dementia

  1. Pingback: Carers’ Group – 10 April – Reflections

  2. 21.
    Just be because someone had a bad childhood or has other “mental disorders” such as Anxiety or Depression doesn’t mean that they can’t also have Dementia.
    It isn’t an either/or situation.
    Some doctors believe if a person had a bad childhood that then all their complex physical symptoms are psychologically caused.
    Correlation does not equal causation.

  3. I have Young Onset Dementia and I agree with 99% of these.
    The only thing I don’t mind is being called love or honey etc as long as it is affectionate motivated and not being patronising.

  4. Maybe, Kate, you could create another list for people newly coming in contact with those having dementia, as it is such a foreign concept.
    So there is a double edged sword with people getting offended with comments being made. For those new to dementia, they are expressing a view from their paradigm.
    It shows that our starting base is still “below ground zero”.

  5. Coming from someone living with Dementia is Very Educative and would make a world of difference as you cannot educate Staff, Siblings and Family enough about their demeaning Approach & Attitude towards People living with Dementia!
    Tanx for Sharing, Really Great Stuff!

  6. Pingback: 20 Things to NOT Say to a Person with Dementia | Dealing with Dementia

  7. Here Here Kate! Excellent list ~ you are so eloquent ~ please keep up the great work. You make a difference by sharing with us and I am ever grateful that you do. xo

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  12. Great stuff Kate … I work in a dementia unit in an aged care facility and am going to print this and put it in the staff room!

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  14. I see you will be speaking at the Terrigal Conference next week.
    To give you some idea of the distance to travel to end discrimination in the Health Industry, I was recently, February 2015, told in a Sydney Public Hospital by a senior nurse ” Your Mother’s dementia prevents us from feeding her.”
    Her G.P. was appalled. I was shocked . She was admitted with suspected pneumonia not Ebola or the Black Death.

    • Hi Paul, I look forward to meeting you. However, I am in shock re your mothers experience of such horrific care. These are the reasons I remain willing to stay standing, and cop the flack I often receive! Disgusting, makes me feel ashamed to have ever been a nurse…

  15. Just after posting today’s story, ‘Whose Truth Is It Anyway?’ on the ctrlalzshift.org site, I came across this list from Kate Swaffer’s, which is perfect follow-up reading. Thanks, Kate, for helping me to understand better. I’ll be sharing.

  16. Hi Kate, I happened to stumble across your blog back in December last year. My grandfather dealt with dementia before he passed away 9 years ago. Now my grandmother has it and she is in full time nursing home care. I am thinking that my parents may want to have a look at this list because for a long time from around December 2011 to December 2013 my parents were the only people who were going around to my grandmother’s house to check on her sometimes 8 times a day and in that time she refused to go to a nursing home for respite as she preferred to stay in her own home. This is my dad’s mother I refer to btw and my aunt whenever my grandmother would forget things, would just tell her that she’s just forgotten. Something I myself would find very harmful to say but I’m often not allowed to say this. My grandmother had always been one for turning things off after using them. as a family we were told by proffessionals that there was a risk she may leave the gas on and burn down her house and the family had to go to court and the judgement was that the gas had to be turned off at the stove and there wasn’t allowed to be a fan heater in the house for fear of it being knocked over and causing a house fire and this is even though the heater would shut itself off if knocked over but I do think this list may be worth my parents having a look at when I find it. BTW, I don’t mean to be rude but do you yourself have dementia or are you just an advocate for it? apologies I do have to really watch what I do say. Kyle.

  17. Pingback: 20 things not to say or do to a person with dementia | UK Assistive Technology News

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  19. Great, I love this, this should be sent to all Nursing homes and doctor’s rooms for staff to take heed of. Can I offer a suggestion? I think you should look to getting this printed up and made available for sale to Dr’s Room’s, Nursing Homes etc, it’s exactly what some need to make them stop and think

  20. Pingback: 20 things not to say or do to a person with dementia | Dementia Caregivers Blog - Hope and Harmony -

  21. Great list Kate. I think it would be even more powerful if the whole list was in the first person. Thus, for example:

    I have dementia. I am a human being with thoughts and feelings just like you. Here are 20 things I hate to hear or experience because they demean and dehumanize me:

    Don’t tell me I am wrong
    Don’t argue with me or correct me
    Don’t assume that because I can’t tell you, that your words and actions don’t hurt my feelings
    Don’t assume I don’t understand just because I am silent

    etc.

    What do you think?

    BTW, I was introduced to your blog by a newfound friend Beth, who blogs here:

    http://www.caregiversunite.org/

    My own blog about my own journey with my Mom is called MyAlzheimersStory; here’s one of my own posts related to your list:

    http://myalzheimersstory.com/2014/09/24/fierce-independence-meets-youthful-arrogance-on-the-way-to-the-sing-along/

    Thanks for your work. I’ve begun following you.

    Susan

  22. Point 11 – I get so irate when people call aged care home residents “old ducks”. Not just for people living with dementia, but anyone. My mother was wheelchair-bound by necessity when she was shopping – someone once PATTED her on the head..! I wanted to kill them – and I wasn’t even there. Respect, please, for all people, with or without dementia,

  23. Hi Kate, Thank you so much for sharing your thoughts with us. I have siblings who are having trouble accepting mum’s Alzhiemers. Your list will show them what is actually going on with mum. I think the ‘attention seeking’ should also be added. You are in inspiration.

      • This is great, have felt so humbled listening to you,it has opened my eyes to lots of things that i just didnt really think to much about, i am a carer of a person with dementia, and these tips have done me the world of good, hopefully it will help me be a better carer. I now no that they DONT do somethings on purpose, even if it feels like that, im going to be more tolerant Thank you

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  25. Thank you Kate, I would be delighted if you would allow me to share this with my fellow carers at the nursing home where I work. We have a dementia specific unit and I think they would learn from it.

    • hello Dorothy, I would be deighted for you to share them… apparently this image and list is stuck on walls in care homes and hospitals all over the world now! if it has helped one person, I am happy, more than that is a blessing

  26. Kate, this list is just so “perfect”. As full-time carer to my Mum who had Alzheimer’s Disease many of these points often floated around in my head and I did “advise” family members / friends of some of them (as Mum’s advocate). If I had made a list for Mum it would have been very much the same as yours.
    Thanks for this wonderful insight.
    Amanda.

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      • Hi Kate:

        I have been the caregiver for my mom and dad (he has Alzheimer’s) for the last four years while trying to juggle work, teenagers at home, grandchildren nearby, and life in general. The hardest part has not been my dad’s dementia, but my mom’s grief and lack of acceptance. Your twenty tips give me hope that she might finally understand what I have tried to model for her and tell .her. Thank you!!

  28. Hey Kate,
    Love the updated version with the additions. I hope I assisted with one of them and if I may there is another phrase I despise which you could possibly add to point 13 and that is “attention seeking”.
    Awesome work.
    Leah Bisiani-Dementia Consultant/RN.1/mHlhSc

    • Hi Leah… I can’t remember as received so many comments, but maybe! I’d love to add ‘attention seeking’ to the list in tip- 13, which I realise needs editing anyway… arrrggghhhhhh!!! just when you thnk you have it ‘just right’ too!

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