A few months ago, and for the first time in my life as a dementia advocate and speaker, it was not a pleasure to present at a conference, and it has taken me some time to recover emotionally, and to be able to talk more about it here. The final session of Day 1 of this particular conference was a panel discussion about the sexuality of people with dementia. During the question time I spoke up about being offended and distressed that on a plenary session like this, such a sensitive and personal topic was being discussed so publicly by a people without dementia, and without including a person with dementia.
However, when I gave feedback to someone within the organisation, sadly, this was not only not well received, it ended with extreme arrogance and a public personal attack on me. I was bullied and had a finger pointed at me, and was very threateningly told “Don’t you dare hijack my conference”, and in front of many witnesses. I was also publicly asked to prove my diagnosis, an extremely ignorant and offensive request.
It seems to me, that many in the aged care and dementia sector are not in fact, really about person centred care, but more about purse centred care, and some of the people working at the top are not really that well-informed about dementia at all. If people at the top of the chain in aged and dementia care cannot take criticism, from the very cohort they claim to care for, then we have no hope of improving the care of this vulnerable group at the cold face.
On further reflection, I suspect to many in the sector is more about Purse centred care than person centred care. So often aged care providers have significant assets and dividends for shareholders, with Annual Reports that look more like marketing and promotional tools to encourage carers to place people with dementia into their care homes, with lots of glossy pictures of happy residents walking in lovely gardens. Too often, the care inside those homes is less than optimum, and definitely not person centred. It is based around the medical model of care, within an institution. And we all know that society no longer places children in institutions because we know they are subject to abuse.
There is big money in dementia.
Many aged care providers look and sound successful, so why would they change such a ‘successful’ formula.
There are may private businesses now selling an array of things, from communication and engagement tools, to pill dispensers, to miracle cures… finding us online and swooping in on us. People with dementia have been so disempowered, and so isolated, that initially it often seems harmless, and that we are making new friends, until one day, it becomes clear we are being used, either to sell products such a ‘miracle cures’ to, or to promote a product, sometimes simply through association.
Martin Luther King Junior once said;“Our lives begin to end the day we become silent about the things that matter.”
I agree. My life matters. The lives of everyone I know and who you know, matters. The lives of people with dementia all around the world matter, and it is important to keep speaking up about the things that matter to us all.
It is important to keep getting up every time we are knocked down, just as at the conference I referred to earlier, it was important for me to turn up on Day 2 and give my presentations. What I have to say matters, and what other people with dementia have to say matters, not just to each but to the people working to provide services and care for us. Most people I meet at the conferences only have a job, because people like me who have dementia.
Too often it also feels like many of the presentations accepted to present at dementia conferences are career launching pads for academics and people working in the sector, or product launching pads, and more about self promotion, and a large proportion of the speakers are employees or associates of the conference convenors, which seems a conflict of interest, and is not the optimum way to have unbiased presentation to delegates.
Self promotion is a necessary fact of life, especially for organisations in such a competitive market, vying for the dementia and aged care dollar, but surely this should be through the usual advertising and marketing campaigns, not in the guise of a conference… or under the guise of providing person centred care, or through ‘befriending’ people with dementia.
People are not yet used to people with dementia speaking up for themselves, but it is inexcusable that often when we do, we are at serious risk of being attacked, and very often by organisations and people who claim to be leaders in the field of dementia care. And it is even more inexcusable in my humble opinion, that people with vested commercial interests, the aged care sector included, are so keen to make money out of such a vulnerable group of people.
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Bravo, Kate. Keep standing up and speaking out!!
Thanks Al… it seems I must until more start to, but slowly I am growing that group of people with dementia who speak up for themselves and each other here, and others are doing it globally. See you in Perth!!
Hi Kate, You are an amazing person, keep fighting and believing in yourself! Theresa Connor
thanbks Theresa… we are all amazing, every single person I know! x
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Strange & funny people those without dementia, they are not used so can not accept that people with dementia are like any other human being, There are prjeudices, cliches, myths and a lot of ignorance as part of the stigma around dementia between health professionals so called care providers & money makers, They have a “view” about dementia and can not accept anything different. I am so used to this as you can not imagine: my grandma & my mother died with dementia that was my reason to start the Mexican Alzheimer Movement 28 years ago, it has been a long battle against all of these years and money making people.
Concerning sexuality and dementia during ADI Conference in Berlin in 2006 together with some friends with dementia we run a workshop about Sexuality and dementia in a very succesful way, before the workshop we circulated a questionaire around the world among people with dementia. Then we had another workshop during Alzheimer Europe first in Estoril Portugal and then in Oslo Norwey. Christine Bryden, Peter Ashley and some other friends were part of the workshops. It is an issue very much needed! but by the way we did then.
You do’nt need to feel distressed or emotionally down. We know you and admire you as a great advocate! I am with you, if that helps!
Thank you Lilia… It seems a few more need to take a leaf out of your book! And it is wonderful to have your support, thank you.
I am yet another that came to you via MOOC, (an Art Therapy MA student doing my placement in aged care), and have silently followed without posting. And another that felt compelled to give you an ovation. You are extraordinary. You are an inspiration.
This year has been a revelation to me, having never been involved in aged care and in fact, before February, never having known anyone with dementia.
Part of my student reflections have been on the corporate culture, and it’s potential impact on a possible future career as an Art Therapist in aged care. My training, of course, has been dominated by the concept of Rogerian Person-Centredness, and it has been somewhat of a shock to witness how this rubs up against the hard reality of business! (And I have to add that my placement facility is way out in front of many, and puts great effort into implementing person-centred care and supporting Creative Therapists, and their work with those who have dementia).
Another voice saying to you, Kate, keep on keeping on! About the things, the people, the ideas, that matter.
Thanks so much Caroline… means a lot to get such positive feedback… it certainly helps me keep gpong on the days (most dsays lately) when I feellike giving up x
Hi Kate, Like Jane Rienks above this is my first posting also and I am working through the MOOC course as well. I’m loving learning about dementia trying to get an understanding of how it feels for the person concerned so I can ease their discomfort as a visitor to the nursing home. My mother is 93 and has mild dementia although at times more moderate. I am glad to say that she is in a proactive nursing home that is working hard at reviewing the whole facility and making it more person centred. My only concern is the lack of staff, I feel sorry for the staff that are there as they are so busy. Some staff have to change their attitude of course but others are loving. I just want to thank you for sharing your life with us and look forward to being able to help where I can those that I meet; so finally a big thank you for soldiering on despite hard hearted people. You are a blessing.
It is the lack of staff in so many places… and this makes it worse for the ones there who are loving and caring as they simply do not have the time required to deliver person centred care. And thank you for joining the conversation here, for doing the MOOC and for being so wonderful to your mum x
Well said Kate! In UK there is a move to pay GPs £50 to diagnose dementia when really the whole community needs to become more aware of dementia and how we all help in supporting those we love and care for…
Yes I saw that… why not spend it on caring for people, not encouraging diagnosis, which may well contribute to more (mis) diagnosis than there are already. I saw on twitter one doctor saying he’d prefer the money to be spent on better care for his mum … sad really
It is sad, I can understand why early diagnosis is good but putting that money into better care and support would go a long way into improving people’s lives. Mis-diagnosis is always a possibility too…
What a horrid experience and how skillful of you to make it into such a powerful blog. It sometimes seems as though people have forgotten the “confer” part of conference.
Oh a lovely thought indeed… where is the “confer” part of conference… had not thought of that! thanks Alison… hope you are well and writing as always x
Kate, I silently follow your blog content to not reply, but consider this reply a standing ovation. IMO that’s the best thing you’ve written.
On being either brave or stupid: that would be an inclusive ‘or’? Speaking truth to
vulturespower is both brave and stupid but it’s one of the most endearing forms of stupid there is. More!!Welcome to the conversation here, and thank you for your compliment… not sure about it bein gthe best, but very happy to accept you think so! thanks x
…prove your diagnosis…..who do these people think they are.??……good on you Kate, stick it up them, you don’t have to prove anything to anyone………..and yes sadly, Dementia is seen as a growth industry, nothing more…..
It’s is best if I don’t szay the words on what I was really thinking Tony!!! and a growth industry indeed, people all over the world trhying to make a buck out of dementia, not just aged care…
Abolutely spot on Kate! And so brave of you to come back the next day! This is the point so often forgotten in dementia discourse – the dementia industry and the money made!
Thanks Jinty… and great blog of yours too, thanks for leading me to it.
Kate that is just awful. And to be asked to “prove your diagnosis”?? What ignorance. I’m sitting at my desk fuming, I can only imagine what you must have felt.
Sadly I think the aged care sector is rife with paternalism. You are right – we need to hear from people who are experiencing dementia. Their views will be varied and we might not always like what we hear but its vital they have a voice.
Keep talking!
Fuming was the understatement of the century at the time for me… but onwards and upwards through the fog it has to be, and not waste precious energy on misinformed arrogant idiots
You are such a brave lady…doubt I could have re appeared the next day, but sooo glad you did.
Keep on keeping on Kate you are such an inspiration
haha, brave, or very stupid?! But I refuse n=to not speak up when it matters to me, like I used to years ago… and thanks for your support
Dear Kate–I have been following your blog since doing the dementia MOOC at UTAS. This is my first post. I am so, so sorry that you experienced what you did at that conference. Thank you for going and thank you for standing up for yourself and for others. My experience of dementia and people with dementia is so far only through the MOOC and your blog. I wanted to let you know that we “get” you, we believe in what you are doing and in our various ways will be exerting pressure for change.
Thanks for joining the conversation here, and for soing the MOOC, it is overall a very good course. And thanks for letting me know you ‘get it’… helps a lot. x
Thank you for standing up! I very much appreciate you and your writings!
Thanks for your support, very much appreciated! x
I feel for you Kate,
very well written and this is one thing that we are trying to change world wide. You did extremely well to stand your ground and for that as a person with dementia like yourself I thank you. big hugs Mick
Thanks Mick, and have you seen your poem in print in the DAI newsletter yet??? I’ll email it to you just in case not x
Gosh! Strong words, Kate. But I have to say, I’m inclined to agree with you. I don’t have dementia but began my career at the age of 14 working firstly as a volunteer with people with dementia before spending many years as a care assistant, then finally, a Mental Health Nurse. In the early days, dementia care was not seen as “fashionable” as it is today and the people who were inspiring me were genuinely passionate about trying to improve the quality of life for everyone affected by dementia. However, having now attended a number of dementia conferences I have began to get the impression, like you, that many people in this arena are more interested in boosting their own egos than making a difference for people with dementia.
I agree with you that we need to support more people with dementia to speak about their own experiences and what they feel could improve their quality of life.
I was sorry to learn about your experience at the recent conference. I think I may know which one you are referring to as I had hoped to attend, especially since the topic of sexuality has been raised by many people I have worked with over the years. However, it sounds as though it wasn’t discussed very sensitively on this occasion. I should love to hear your thoughts on the topic per se as it is one that many people continue to raise with me, and one that paid care givers often struggle to comprehend.
Incidentally, I shall be attending the forthcoming Alzheimer’s New Zealand annual conference next month where I understand you will be presenting, so if you would prefer to talk to me face to face I’d love to share your thoughts.
Best wishes
Karen
Love to chat further in NZ.. looking forward to it. I am trying to write about sexuality and dementia, but find it is a topic I am loathe to share here or anywhere publisly as it also involves my husband, and is too personal to do that without him! Part of my concern about our sexuality being discussed by people without dementia at this conference too, of course!
Hi Kate. I fully understand. I hope we get a chance to meet at the conference.
Best wishes
Karen