Dementia Advocacy: a waste of time?

During Dementia Awareness Month 2020, I’ve been publishing a blog every day, and trying to cover some different topics. Some are quite contentious, but I believe need to be talked about. The status quo in advocacy is driving me a little crazy… 

Anyway my daily blogging is unlikely to make a difference, but it at least makes me feel like I’m doing something!

But…

So much more than blogging by someomme like me is needed.

So much more than awareness campaigns are needed.

So much more than stories from people with dementia or their care partners are needed.

So much more than the promises of action are needed.

We need action, right NOW.

My good friend Shibley Rahman who cares for his mum full time, often says awareness campaigns do nothing to improve his, or his mother’s experience. I think he even goes as far as saying they may do harm. I’m not sure that he’s wrong either.

So let’s be brutally honest about advocacy.

  • People with dementia are still often referred to as sufferers, even after 25 years of advocates campaigning against it.
  • People with dementia still experience stigma.
    Peopel with dementia still experience discrimination.
  • People with dementia are still being denied adequate post diagnosis support, includign rehabilitation.
  • Many people with dementia are even being denied full and equal access to health care. COVID has certainly highlighted that in a very tragic way.
  • Many health care professionals know very little about dementia.

And this list could go on. So how do we change the status quo?

Without a major rethink, I am starting to believe that the last 20+ years of dementia advocacy has mostly been a waste of time, if we were to actually measure the progress or change so many have been asking, sometimes almost begging for. The lack of change is palpable and as I said in a recent blog,

Ripples in a pond are no longer enough.

Footnote: I did post this blog a few days ago, but somehow it has ended up back in the drafts folder! It may have been very different to what is published here today, but such is life in the fast lane called dementia!

27 thoughts on “Dementia Advocacy: a waste of time?

  1. Pingback: Activist and Activism: what do they mean? |

  2. Your comments are so insightful Kate. A lot of ‘advocacy’ work is about making people who are outside the experience ‘feel good’ – they can wear a little badge to prove they now ‘know’ something – but they have no idea. The real stigma is not coming from an ‘ignorant general public’ – it is coming from medical and nursing professionals who still ‘write off’ people they can’t cure or medicate. They have no training in the social experience that is dementia, but don’t want to relinquish their control over how ‘dementia’ is defined.
    While the ‘peak bodies’ and professionals in this ‘industry’ continue to define this as a ‘doom and gloom’ disease, so ‘horrible’, so ‘tragic’, we will get nowhere. This attitude builds up intolerance to anything that ‘they’ don’t define as ‘normal’, when real human beings are actually so diverse anyway.
    I remember going to a cafe (not a dementia one) and the girl serving us asked why my husband was cleaning out his coffee cup with his paper serviette. I smiled sweetly and said just, ‘Because he enjoys doing that when we are out’. She persisted, ‘but why?’ I realised I had a choice – I could give her a short explanation – that he had dementia, but I chose a different path. I responded, ‘Well, lots of people do quirky things, and I’m sure you do sometimes. It’s fun isn’t it! And you might find yourself doing that when you are 80 too!’ She was a bit taken aback and I have often wondered what she made of that conversation. But I didn’t see why I had to ‘explain’ him in terms of ‘illness’ – as if that somehow made his (very harmless) behaviour more ‘acceptable’. It was her attitude that was the issue, not his behaviour. Should I have ‘educated’ her? It is ‘the medical model’ that is getting in the way of real acceptance because people hide behind it too – disease ‘explains’ life.
    I get tired of reading about the search for the ‘cure’ when people impacted directly are so unsupported. I am tired of counselling and respite being offered to partners instead of quality information, training and support. Dementia Australia just ran 5 webinars on ‘quality care’ and all these eminent speakers did was agree it was need but none of them defined what they meant by this!
    The aged care industry is sickening – just making money at the expense of older Australians, and the disability sector is not much better.
    Sorry about the long response – I just think we need a lot more anger!
    Keep stirring Kate.

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    • Thank you Gaynor, I really appreciate your very thoughtful comment. I’m so so tired of hearing eminent speakers say the same thing I’ve been saying or listening to for a decade too! And I am not sure any more anger would be good for my heart 💔 xxx

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  3. Sounds right to me. I have just recovered from a year long depression following the death of my mum with Alzheimer’s; and the Celebration of Life; and mailing to her friends and family in Canada and Great Britain. I’ve just about completed the letter I am sending to our local paper in an effort to include a recognition of World Alzheimer’s Awareness Month and Day in their paper. In the letter I include information I heard in a wonderful Ted Talk from a British Alzheimer’s researcher. He says (and I fully agree) that we will never find a cure until we have similar, worldwide (I’m adding that), groundswell of public activism like there was for HIV-AIDS and still is for Cancer and Breast cancer specifically. He says the governments will not commit sufficient funding to this illness UNTIL their jobs depend on it! How do we do that? Is not social media the way to gather people for change? Did the public not just do this in the United States with Black Lives Matter; in other countries in recent years, with successful outcomes? I don’t imagine it’s easy and it would require a sustained effort. In my letter I include his thoughts that those with the illness normally aren’t able to do this activism and their caregivers barely get enough sleep as it is. So it needs to be people like me; whose loved one is dead, who are not depressed or mentally unable at this time and ??? Did you know that the first Alzheimer’s death was recorded over 100 years ago by Elois Alzheimer? Did you know that we can offer no better medical effort to the current sufferer as Elois was able to offer to this woman? How nuts is that?

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    • It is nuts indeed that NOTHING has really changed in 100 years, including the language used, as most people with dementia do not like to be called sufferers. Even though we suffer som eof the time, it is a negative and disemporing label. But thank you anyway for sharing your important feedback and comments, I apprecaited it a lot. xxx

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      • Thank you for the education. I learned the language of Alzheimer’s while caring for my Mum since her diagnosis in 2015, through her death in July 2019. A lot of education; through my local Alzheimer’s society, more on the internet, and many books. I apologize for using the word ‘sufferer’. I hear you and now understand. I will not use that word again.

        I have a lifelong girlfriend living with Early Onset. She is almost 59; and was diagnosed in 2015. I loved the poem by a member here. It helped me understand where you are coming from. I pray for improvement for all of us. I will celebrate my friend and know that she is not different than she used to be. We’ve known each other since 3 years old. I cherish her and her husband 💛💞

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  4. Hello Kate, my name is Haylee and I wanted to let you know that your daily blogging is making a difference to me and how I support people living with dementia. I am a health care assistant in a NZ hospital on an older person’s rehabilitation ward (which also supports younger people at times). Your daily bloggings always prompts me to think about your topics/frustrations you experience, and consequently (I believe) helps me provide better support and quality care. So thank you Kate.

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    • Der Haylee… thank you for lettign me know I have made a difference to you in your practice. That means a lot, and is important. I’m hopeful we get a lot more people like you, and a million or three million or so policy makers to change as well! xxx

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  5. Kate – you have succeeded – you have been a beacon of inspiration to so many – we are here with you because what you do gives others momentum to keep your amazing quest alive. We are ageing and tiring – but there are others keeping your message in your hearts. I still believe in the miracle that is Kate Swaffer.

    Liked by 1 person

    • You are very kind dear Robyn… changing hearts is great. Changing policy and practice is what is desperately needed. I measure my advocacy on actual change, and although the change you say has happened for you (and many others tell me the same), when I keep meeting newly diagnosed people with dementia, from all corners of the globe, who almost all report they too were only Prescribed Disengagement, as I was 12 years ago, then I do not believe I have succeeded. I’m aware some peopel with dementia disagree with me, and that they are happy with a few changed hearts or attitudes. I advocate for systemic change, and that has not happened, not even remotely. But thank you eternally for believing in me!xx

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  6. I respectfully disagree..
    In Scotland we have had a lot of successes; Franks Law giving free personal care to under 65’s to name a recent one.
    I think much depends on the “soul” of your country. Scotland is very societal, (not socialist), making an assumption here, Australia sounds a bit like the US; a frontier soul, where personal independence from society is the norm.

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  7. Hi Kate,

    I hope I am stating the obvious by now when I say that you’ve been a tremendous mentor for me over the past 6 years. Your blog has enable me to grow a new and precious understanding of the point of view of people living with dementia. To this day, you still rock my world and I count on your words of wisdom to keep my blind spots in check!

    I am too always wondering about the efficacy of my own advocacy efforts here in Italy. As a matter of fact, I feel that, after all these years (not many, but they are almost 7), of trying to promote a more positive, inclusive and enabling culture of dementia, I am not sure I’ve achieved a lot. And this fills me with immense sadness and a sense of personal failure. Stigma and prejudice are still pervasive, people keep talking about dementia by using the most horrible metaphors, and our residential homes have been hit by the Covid-19 pandemic brutally. So much for all the dementia-friendly campaigns that so many of us have been investing on these past few years! As a former marketing expert I can tell that most of these DF efforts works well as self-promotional tools for the organizations that set them up, but not so well for the people they are trying to impact.

    I have come to the conclusion that words – i.e. awareness campaigns – are never enough. To change people’s mind, to overcome those fears and prejudices that have transformed dementia in a taboo, we need to show rather than simply tell. For instance, show that people living with dementia can and should continue to live a fullfilling life, that their disabilities deserve support and enablement tools to ensure that they are always part of the narratives and programmes, that their needs and expectations as citizens of their communities matter… I still believe these goals are achievable, but not before professionals such as myself learn to accept that fact that they have huge areas of ignorance and biases to deal with when it comes to understanding this condition. To bridge their ignorance gap they need to learn to set aside their superiority complex and ask people with dementia to come onboard every step of the way.

    This brings to mind an article I’ve read recently on Psyche Magazine about our tendency to dehumanize otherness: https://psyche.co/ideas/recognising-our-common-humanity-might-not-be-enough-to-prevent-hatred. If you have the time, one of these days, I would love to hear your opinion on it.

    Thank you, for everything that you’re doing. I am forever in debt with you for having taught me so much.
    xoxo

    Eloisa

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    • My darling friend Eloisa, Thank you for sharing. I had read that Psyche article, and have started writing a blog about exactly that. In fact, only last week I was being interviewed and said most people cannot accept any form of ‘otherness’. What a sad lot some members of humanity are… I think we need a week together (SOON!!!), not that it will be possible for some time to come. Much love dear friend, and I guess, we both have to keep going? xxxxx

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  8. I share your frustration, Kate. I too wonder, how to stimulate action, in place of the constant explaining and talk-fests. The only thing that gives me hope is to believe that I am part of a campaign to educate the world, one person at a time, and that there will be a point when the scales tip…although some days this feels so far away, and life is short!!!!!

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  9. You are so right Kate. Advocacy seems a waste of time. Part of the problem is that we argue our case, rant like lunatics, scream until we are blue in the face TO THE WRONG PEOPLE. I never get push back from people living with dementia, nor their supporters – but I am constantly dismissed by health care workers and academics. And reminded that “11%” of care providers do a good job. Frankly I don’t care about those 11% or so, yes they are DOING THEIR JOB, good for them (I am grateful of course). Seriously, institutionalised care is a failure, and I am furious that we still throw more and more funding to a model that should be abolished. No one listens. It is like the whole sector is in a bubble protected by career health and policy workers.
    Apologies for the rant, your blog came along in the midst of my frustration with the findings in the interim report from the Australian Royal Commission. Bah.
    Your advocacy, your activism, inspires me and keeps me going just when I want to throw the towel at the whole medical/departmental bias… so thank you – you make a difference (for me), it has not been a waste of time. But I totally understand that the whole point is to make positive change for the lives of people living with dementia, not just advocates.
    Flipping heck, I get mad sometimes. I can’t possibly imagine how mad you get!

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    • Thank you Kate… and yes, I am mad, a lot of the time, figuratively speaking! I found out this week, that a number of aged care providers fund political camaigns (the left and right!), so of course, it now makes sense why the curent and past government(s) have ignored the many reports over the more than 20+ years of the need for change. Of course, anyone funded in politics, is not going to make any real change!!!! Oh, and it seems no one else is goin to either 😦

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