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.