I was having a fascinating conversation recently with an aged care historian about how, if you look back in history, people have always ‘other-ed’ people with certain conditions by separating them out from being ‘amongst us’ in society. ‘Warehousing’ the elderly, disabled, the poor, the ‘other’, is nothing new.
And when it comes to dementia, I think we’ve inherited and perpetuate a set of beliefs that are almost medieval. The way that we ‘other-ise’ people who don’t feel familiar or comfortable or safe to us.
It’s very wide and very deep and often invisible, but people with dementia are too often being treated as less. Whether it’s conscious or unconscious, and maybe partly because people don’t quite know how to interact, it happens all too often.
Sometimes it’s done quite brutally, and sometimes it’s done ‘nicely’. But either way, the problem is that it is always disrespectful, and almost always disadvantages that person’s sense of self.
It means they’ve they’ve lost their world of credibility and equal participation, their humanness, or full ‘personhood’ in society. They’re being discounted. But it’s not dementia itself that strips somebody of that right; it’s not a symptom of disease. Society – people collectively and mostly unconsciously influenced by history rather than knowledge – do it, and that is something we can change.
Many years ago, maybe nobody thought about it much or simply didn’t know any better. There was not, until 1947 and the declaration of Universal Human Rights, a framework promoting the value of ALL human beings. Now, we might ‘know’ better, and certainly some things have improved, but I believe we still have a way to go.
There’s some really great work being done in this space evolving new ways of living for people experiencing dementia, supporting each other, and pushing back against people who diminish or demean them through this idea of reframing dementia, of ‘new narratives’ and practices, and changing how they are perceived.
There are some amazing joint research papers and community projects out there to support this. Some of them are working collaboratively with people with dementia and including their views and ideas to help create this new way of thinking.
It points out the stigma very forcefully, and gives a lot of examples in different places to show society how it’s being done.
There’s also this slogan, “Nothing about us without us.”
Mostly it’s come out of the disability rights movement. It’s pointing out that dementia is just a collection of different forms of progressive neurological disability, and people want and deserve respect, dignity and to (at the very least!) participate in decisions affecting their own lives. With well informed attitudes amongst people around them, and tools such as ‘supported decision making’ being used as needed, it is completely possible and should become our ‘minimum standard’.
Because, as with many other diseases that do change things, you can live a good life for a reasonable amount of the journey with dementia. Especially if you have people around you who support you, and help you fill in the gaps of the things you maybe find harder or impossible to do as the disease progresses because that part of your brain isn’t working so well anymore.
Many have been diagnosed with younger onset dementia, and they are perhaps a bit more willing and prepared to be publicly boisterous and assertive about it, but I certainly believe that my Mum would have been a big champion of it too if this kind of discussion existed back then – about empowerment rather than disempowerment.
She’d done a social work diploma and was very passionate about empowering poorer communities to make decisions for themselves to get them out of poverty, rather than having it done for them. So that was very much her natural way of thinking.
We kind of stumbled through this process on our own, naturally, with no textbook.
Through my interactions with Mum I came to realise that traditional ways of working with people with dementia just didn’t cut the mustard with her. She would just call me “Bossy Boots” and ignore me if I was being patronising or impatient.
I know, for example, that she had always dressed neatly and ‘put herself together nicely’ as she was taught was ‘proper’… yet as her perception of clean and neat changed, as her dementia progressed, she’d walk down to the shops in clothes that perhaps didn’t match and weren’t her usual style. And some of them weren’t pristine, like previously.
At first, I’d freak out about it. Thinking I was doing the right thing, I’d try and get her to change and she was like: “What business is it of yours what I wear down the street?”
Fair question! In everyday life, things like that, these feelings of being able to make your own decisions – or not – would constantly come up. I found myself thinking about it, climbing off the tracks of conventional thinking, and asking myself: “Does it really matter?”
I decided it didn’t. Her sense of agency and self determination, hard won for so many women of her generation, mattered so much more. I decided I would try and intervene if she was going out to a public function (and we’d have some hilarious nights trying to come to an agreement on what she could wear that I thought was ‘suitable’ and that she would tolerate), but the important thing was that she still went, she was still relating and still talking to people and enjoying music and conversation, rather than succumbing to stigma.
And people just came to tolerate what seemed this sort of ‘mild eccentricity’ from her.
The truth is this proved beneficial for both of us. We were both able to relax a lot more with each other.
Instead of me running around and trying to anticipate or make up for everything and ‘make everything alright’, ‘fix things’, I just learned to do what was going to work for her at that point in time, which often meant getting a sense of her mood and what she wanted and then working with that as best I could.
It became more about a partnership. I became her supporter, rather than her carer.
Because people who have dementia are still capable of a hell of a lot of stuff. And it’s to be human really, isn’t it, to want to have a say in your own life?
There’s usually quite some time before the end stages of dementia, and in those years you can make and implement a lot of choices about your present and your future.
So it’s about saying: “Okay, I’ve got this disease that nobody would want to have. ‘It’s a bugger,’ as Mum would say. But how am I going to deal with this and make really the juicy best I can out of the life I have? How am I going to get the support to do that? How am I going to flick off people who are patronising and find people who are empowering?”
And how can we, as a society committed to the rights of everybody, do our reasonable best to facilitate the rights of each and every person in society? That’s the whole idea of universal human rights.
Because we need to create the kind of world we want to live in, and leave for others.
And the statistics are showing that dementia is only increasing. It is a leading cause of death for women in Australia, and the second leading cause of death for men.
This isn’t something that’s going to just go away. Thinking, “well, if that were me in 10 or 20 or 30 years’ time, how would I like my life to look? How would I want to be treated and supported? What could I still feel a part of things that mattered to me?” might help.
After going through this experience with my mum, making lots of new friends in the field, being involved in policy and so forth, and now, with lots of new supportive research coming out, I’m also starting to offer workshops to lead people through some of this reconsideration and what that might look like in their lives.
Of course it’s going to be different for everybody. But at the end of the day it’s their life, not ours.
Ultimately, it’s about supporting meaning and agency for the person that lives the experience. Although the forms of this will change over time for many of us, this is the new best practice.
We have a lot of catching up to do.