This 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!
kateswaffer.com 
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If a person ask to see their parents and they are dead should you tell them they are dead ?
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Hi Gary, not completely able to answer that without knowing them or being there… I’m guessing watching some Teepa Snow videos may assist you more than me. I suspect though, if they think their own parents are still alive, perhaps distraction is possibly appropriate.
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This is a great post Kate. It’s so imperative to empathise with other people – treat others as you’d want to be treated. Many thanks for putting this list together – will keep for myself as a reminder and will also share.
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Glad you found it useful… It actually needs a bit of updating, and removing some minor repitition too! One of these days, I may get to finish the book I started on it too. Dreaming is, they say, quite good for us 🙂
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Kate, I do not have dementia, however my father had dementia and I currently work for an organisation promoting dementia awareness in the community – to individuals, businesses and voluntary sector. In the UK I’ve been told to use the term “living with dementia” . I thought this was an acceptable terminology. yet you have stated that we should NOT use it unless we ourselves are living with dementia ourselves.
May I ask why the term “living with dementia” is not suitable for those without dementia to use as a way to describe people who have dementia?
Thank you – hope you get this message.
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Hello Winsome, what I and many others who are diagnosed with mean, is that we believe it’s not ok for a care partner or unpaid support person to say they are living with dementia. Hence it’s (IMO) ok to use it when referring to a person diagnosed. Hope I’ve explained the context? Best, Kate
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Glad you found it useful… It actually needs a bit of updating, and removing some minor repitition too! One of these days, I may get to foinichs the book I started on it too. Dreaming is, they say, quite good for us 🙂
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Your insights Kate remind me of why I work with People living with dementia and continue to study in this field. Working in an RACF is so frustrating as we are still hitting our heads up against the wall on “staff centered care.” I shall battle on as long as I can.
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Thanks Denise, don’t give up yet! Please! Kx
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Another Point that requires inclusion,the last rites. The last thing that goes is hearing and can you imagine the terror in a non responsive patient to know they are dying.
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Hearing loss is so important to always consider… x
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Profound advice Kate!
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Thanks! One day I’ll finish my book about it, elaborating on this list in detail.
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Thats great Kate-i look forward to reading your book and ill by it soon!Good on you for writing another book!Will print it off and it give it to my Aunty and Grandma to hopefully learn some things too!
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Thanks Sam
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Hi Kate, I think this is so helpful for people. Would you mind if I shared this jpeg on a (new) curated website with full credit to you and a link back to this page?
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That’s fine Maureen, thanks for wanting to. 🙂
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Thanks for sharing my work… your article reads like a ‘rewrite’ of mine. Better to get the message out there, than worry about plagiarism, which I have started to see as a compliment, rather than be annoyed.
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Thank you for this Introduction – I am at the beginning of my journey! Bevvyx
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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.
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Agree! And take care 🙂
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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.
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Sorry to read you have joined our ‘club’… let me now if there is any way I can support you.
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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”.
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That is a great idea Jo… and is also why this list is the basis of my third dementia book, to explain why, and what the alternatives are, if I ever get to finish it!!
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The list is great Kate and I will look forward to the book. Thank you for all you do.
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Thank you… I suspect the book might be in my next life though!! X
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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!
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Many thanks for this useful list. Have re-blogged and will show to local groups. Can always rely on you to come up with the ‘good stuff’.
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thank you, and feel free to download and share xx
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Reblogged this on muntma and commented:
We all need to read this.
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Thankxx
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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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Thanks GF! xx
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Reblogged this on george rook and commented:
This is always worth re-blogging and re-reading
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Thanks George… my book that will end up being 20 chapters, with why, and what some alternatives are, is in progress as well!
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Reblogged this on Belledelettres's Blog.
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Thank you.
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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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thanks x
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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.
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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…
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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.
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Thanks Alan…
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Thanks for your response Kate, I don’t know for sure whether altsheimers
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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.
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Thanks for sharing your personal story here… and I have younger onset dementia, and have been writing almost daily for about three and a half years.
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Reblogged this on Every Cloud Has A Silver Lining and commented:
Often people are afraid of speaking to someone with Dementia because they don’t know how – they think he/she needs to be treated differently. That’s not the case. These 20 things not to say will help put your fears at ease.
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Thanks for the reblog Jane
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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
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Thanks Robyn… my next book is this list, as a chapter each, with why, why not not do or say something, and the alternatives… many universities and hospitals are already using it, which is encouraging, as we as the updated Alzheimer’s Australia dementia language guidelines found here https://fightdementia.org.au/sites/default/files/full%20language%20guidelines%20final.pdf
xox
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What a good idea robynverrall. All professionals, inclusive the medical, should keep learning!!!
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Indeed! Everyone of us, every single day…
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Reblogged this on Dementia Caregivers Blog – Hope and Harmony – .
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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
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Thanks Susan… I sometimes write in the first person, but not always.
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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,
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totally agree with you Carol… and lovie or dearie gets me reasonably riled too!
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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.
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thanks for the for another tip, and I really hope my list and blog helps your siblings xx
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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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thanks Suzy x
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Hi, thank you for such interesting information, this has been a tremendous eye-opener in adding to the comfort of those going through this illness. REWARDING!! AWESOME!!!
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Thank you Maria
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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.
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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
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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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Thanks Amanda… so glad it resonates
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As a spouse of someone in the early stages, I found this amazingly useful.
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Thanks Alice, and I hope you find many things helpful here and elsewhere.
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Just thank you
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My pleasure… hope it has been helpful.
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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!!
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Thanks Julie, I hope it helps…. and take care, your mum and dad are lucky to have you around x
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ahaa, Yes, attention seeking – as if it’s a crime!
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It is such an awaful term to use for someone struggling to communicate due to the symptoms of dementia, actually very mean!
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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
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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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