In November I’m delighted to have been asked to present at, the ITAC2017 conference in Queensland. The conference team asked me to present my thoughts about the use of technology in aged and dementia care, from the point of view of a person diagnosed with younger onset dementia.
My speech is simply titled, Technology in aged and dementia care. I will discuss the advantages and the disadvantages of navigating the future of aged and dementia care through the use of information technology (IT). In my speech, I plan to review the value of IT, including robots, virtual reality and even artificial intelligence, in establishing a sustainable, quality focused aged and dementia care environment.
From a practical perspective, I’ll also highlight there is much more than IT to be used to better manage and design aged care services and delivery, and to better support individuals requiring assistance, whether from the disAbilities of dementia or ageing.
An example of what I will talk about refers to the emergence of virtual reality. I’ll consider whether focusing on what people without dementia think dementia might be like, and then spending vast amounts of money on virtual reality products to show more people without dementia what it is like may not be that appropriate.
One or two consumers, in the early stages of dementia cannot possibly know what it is like for the many diagnosed, especially what it is like for those with more advanced symptoms of dementia. Selling or promoting a product totally based on the deficits, simply to help someone be kinder, is not necessarily helpful for people with dementia, and may even contribute to increasing the stigma.
And I also wonder, ‘whose reality is it?’, as I believe as a cohort, people with dementia have not been properly involved in the development of VR or in fact, any other type of IT?
I’ve been assured some of the data being collected from the Virtual Reality rooms and gadgets around the world have indicated they ‘improve care’ of people in residential settings, which is a positive, but if we need to spend millions on technology to produce what people without dementia think it is like in our world, simply to make people provide kinder more compassionate care (paid or unpaid care partners), I have to question it.
Is there not something wrong with the training of the staff providing care in the first place, if we need to provide a VR experience for care staff to be more compassionate and caring? When I trained as a nurse, our first ‘duty’ was to provide care for our patients with compassion and kindness.
The evolving environment of consumer directed care and choice highlights there are many challenges ahead in this sector, and I will discuss how IT may or may not support this. I’ll also consider whether IT will encourage humans to become more dependent, or if it perhaps, in the longer term, ensure more independence.
At this conference I’ll also discuss whether a robot can or should replace a human in aged care, as well as outline the many strategies I have developed to manage my own disabilities caused by the symptoms of a rare younger onset dementia. The world is being taken over by information technology, virtual reality and artificial intelligence, that is certain, but in the process, are we all ignoring the many other strategies and supports that can assist people to main independence, outside of technology.
The emergence of robots in care is also of great interest, and the robot currently known as Sophia seems life like and appears to be very intuitive. There have been many different opinions about this that appear in the media, including outrage that we are doing away with humans in the provision of care, and also some consensus that a robot is better than no one to visit or care.
In countries that had a one-child policy at some stage, robots may be the only things available to provide care. I’d definitely suggest some care, from a kind and intuitive robot, is better than no care. In fact, given the experiences of residents at the Oakden facility in Adelaide, I’d suggest robots might well have been preferable in providing the care. I used to have serious doubts about robots, but have discovered they can be far kinder than some humans, so I’m warming to them.
They are also better than no contact, and possibly not much different to many of the interactions on social media. Plus, they are much safer, as the worst they can do is to go in the wrong direction, and fall down a lift shaft, which recently happened at the new Royal Adelaide Hospital! It is unlikely they will hold a pillow over a residents face in an attempt to suffocate them, which has happened in a number of residential facilities around the world, including Australia, and is one of the reasons there has been a CCTV campaign in the UK.
With all of the emerging IT being developed and used in aged and dementia care, I’d like to see things being developed that focus on supporting the remaining abilities of people with dementia, with a positive focus, rather than a deficit based one, and supporting the disAbilities caused by ageing or dementia more positively.
If their development simply assists people without dementia to feel more kindly towards people with dementia as the measured outcome, that is not enough.
The progress of IT for use in aged and dementia care needs to involve more than one or two of us in the planning and development through to the end stage, and then the product of software needs to tangibly and positively impact the lives of the 50 million people estimated to be living with dementia today.
As the late Professor Tom Kitwood suggested, if you have met one person with dementia, that is all you have done, and everyone’s experience of living with dementia is vastly different.