Written for and published first for The Aged Care Report Card and their news site RetireNCare on Apr 11, 2016, is my article below:
The time is now that the aged and dementia care sector not only provides us with better residential care, but the whole sector finds a new way to support us to live, not only to die.
“Recently I had the pleasure to meet Lauren Todorovic who founded Aged Care Report Card. After a lot of discussion, she asked me if I would be interested in writing for RetireNCare, and as an activist and advocate for people with dementia and those in residential aged care, this was definitely too good an opportunity to pass up!
Part of the vision of the Aged Care Report Card appears to be to highlight what is happening in the aged care sector, but not only to promote the great things happening, to make consumers more aware of their rights, and what services are out there. The power of the consumer voice is growing, and we have been asking for a version of a Trip Advisor style site in the aged care industry for many years, so hats off to Lauren for starting one.
What is important about hearing the consumer voice is that as the baby boomers and beyond start to require services and support including community, respite and residential care, unlike the older generation of people, if we are not happy, we will speak up. We’ve been taught to have a voice, as have our children. We also have a human right to being not only included in the conversations, but to being heard, and importantly, listened to and acted upon, without prejudice.
The dementia advocates globally have been using the phrase “nothing about us, without us”, borrowed from the disAbility sector over 20 years ago, and yet, still more often than not, we are missing in the conversations. As a person living with, and beyond a diagnosis of younger onset dementia, I feel propelled to support others with dementia to speak up for their rights.
Dementia Alliance International, which is the peak body for people with dementia and where membership is also exclusive to us, has been advocating for over twelve months on the human rights, and disability rights of people with dementia.
Not only is it unpalatable that we are Prescribed Disengagement®, meaning we are told to go home, and in my case because I was younger, to give up work, to get my end of life affairs in order, and get acquainted with aged care, it is unethical.
Dementia is, as far as I am aware, the only disease, which is also a terminal illness, where we are not told to ‘fight for our lives’ nor provided with an ethical pathway of support, including rehabilitation. Nor are we being offered full disAbility support, as any other person with disAbilities would be. In this way our human rights are being breached, as we deserve the same support as anyone with a brain injury, a terminal illness and disAbilities. Whilst there is still not a cure in sight yet for dementia, there is much evidence emerging on risk reduction, and on the reversal of cognitive decline and dementia.
The time is now that the aged and dementia care sector not only provides us with better residential care where person centred care is in practice, and not just a tick box in the documentation, but the whole sector finds a new way to support us to live, not only to die. We want smaller homes, with supportive personalised environments, that are dementia enabling. We have a human right to them.
We want access to all allied health services, including rehabilitation and regular exercise. Yes, we will want exercise that is beyond for example, balloon throwing in a chair and even includes walking, and activities that go beyond Bingo. The recently released new Australian “Clinical Practice Guidelines and Principles of Care for People with Dementia” may be a good start, but they almost completely miss out recommending a fully ethical pathway of support that gives us the best opportunity to live well with dementia.
I am advocating globally for there to be a change to what is currently known as Behavioural and Psychological Symptoms of Dementia, where in Australia, it is being taught that 90% of us will experience these ‘behaviours’ as if they are symptoms of dementia. I reject this, and whilst it is still new thinking in the sector, if the care provided is more ethical, rehabilitative and enabling, rather than the current medical model of care which is disabling and dis-empowering, and where our communication and other unmet needs are also properly attended to, I believe there will be only 10% of ‘behaviours’ due to the disease process of dementia requiring less medication and other forms of restraint.
Finally, I have just been involved in submitting two separate submissions to an inquiry into the ‘Indefinite detention of people with cognitive and psychiatric impairment in Australia’. This does include people with dementia, who have previously been left out of this cohort, and does not only mean the prison population of people with dementia. It includes the more than 260,000 people living in residential aged and dementia care who are currently detained. It is 100% a human rights issue, which all providers will very soon need to consider when they design new facilities. Australia is behind some parts of the world in this area, and whilst we do have Dementia Enabling Environments guidelines that are freely available, too few bother to use them.”