#Every3seconds – the Third Dementia Strategy One Year On

September 2018 marks the seventh World Alzheimer’s Month, an international campaign to raise awareness of dementia and to challenge stigma. This year’s campaign promotes the important message that every 3 seconds someone in the world develops dementia. That is a startling and arresting figure highlighting the extent of dementia as a worldwide health challenge. It has also forced me to reflect on what has happened since the launch of the Scottish Government’s Third Dementia Strategy which was published just over a year ago on the 27th June 2017. The Strategy states boldly in it’s Executive Summary that: ‘Our shared vision is of a Scotland where people with dementia and those who care for them have access to timely, skilled and well-coordinated support from diagnosis to end of life which helps achieve the outcomes that matter to them.’ It has numerous action points and recommendations. A blog isn’t the place to reflect on each of these in depth but I do wonder how much closer are we to achieving the vision of the Strategy? So … here are three brief thoughts… Workforce: a core part of the Strategy is the recognition that equipping and skilling up the workforce is essential for the delivery of effective dementia support and care. In some parts of the system – and I’ll be frank – in the NHS we are getting there with a good degree of resource improving excellence and championing the cause. But I lament the inadequacy of resource being allocated to the social care workforce which delivers the vast majority of support to folks living with dementia in Scotland. We’ve got the courses and the programmes, the talent and the willingness – what we lack is the capacity of organisations to free up their staff to do the training and develop their practice. In particular care at home organisations are struggling in the face of rising costs and reductions in fees to be able to survive never mind equip their staff to achieve dementia excellence. I hear from so many sources that because of their own financial pressures that local authorities are cutting training and learning budgets to the bone. Put simply we can never achieve a skilled dementia-confident workforce in social care unless we pay for it. Palliative care and end of life. Most palliative care and end of life support is delivered by social care staff. It is they who are present to reassure and offer comfort, to chasten fear and grant solace as people struggle with dementia and with what that means. Yet we support them so poorly. Countless workers are leaving their jobs because of the emotional fatigue which is the real cost of delivering human centred palliative care and yet something simple like attempts to create bereavement support for this group of staff are continually frustrated. Add to that the existence of effectively electronically tagging our workers and the obscenity of 15 minute visits which treat people with dementia with such indignity and it’s little wonder we have an increasingly burnt out workforce. Thirdly, the Strategy recognises the invaluable and fundamental role of informal carers in providing dementia care in Scotland. We now have a Carers Act. The aspiration of that Act is to support family carers and to enable them to continue to support their relative who might be living with dementia. Even though it’s still early days the comments I am hearing suggest to me that this is yet another good Government policy and legislative intervention which is well intentioned but poorly implemented because of inadequate funding. Care providers and their staff daily work alongside informal carers and I know that in exactly the same way that paid staff are emotionally drained then so too are countless hundreds of our army of thousands of family carers. This has been compounded by the dramatic loss over the last year or so of local day services and opportunities to offer respite and rest to families. So the vision and aspiration of the Third Strategy seem a distance away from the reality of many lives being lived with dementia across Scotland. The Strategy also states: ‘At the heart of this strategy is a recognition of the need to ensure a person-centred and flexible approach to providing support at all stages of the care journey.’ The 21 commitments might be being partially achieved but I find it hard to be persuasive of that to the person who spoke to me recently and who told me the story that because her local authority had needed to save some money on its budget that it had changed the supplier of continence pads – she has had to use the savings she had put away for a holiday to buy extra supplies which work for her husband with late stage dementia. I can’t really face her and say we are now one year into our Third Dementia Strategy and are doing as well as we could or should. Dr Donald Macaskill @DrDMacaskill

Three months ago I wrote a blog (Social Care Luddites) arguing that the social care sector was amongst the most innovative around in terms of technology and digital design and usage. I argued then and still would that the sector has not been as fully recognised, valued and involved by others, as it should have been, should be and must be as we move into the new technological future. I am therefore delighted that on Friday Scottish Care, with the invaluable support of the Clydesdale Bank, will be hosting TechCare, CareTech. This sold out event brings together a whole range of developers, designers, providers and staff from across the care home and homecare sectors in Scotland to explore issues of technology in the care of older persons. It’s been a busy few months. On a personal level shortly after I wrote the blog I had a conversation with a friend who just happens to be a senior academic at Oxford University who researches and teaches in the area of Big Data. We sat in my living room and she spotted I had an Amazon Alexa. Within 30 minutes of a conversation I had disconnected the machine and put it in its box where it has remained ever since. There then started several weeks of personal learning and research – including some very interesting holiday reading! What began as an exercise in me collating my own thoughts on technology ended up in a 60 page report ‘TechRights: human rights, technology and social care’ which will be published tomorrow at the TechCare event. I am extremely grateful for all those who sent me books, articles and papers to read and spent time in conversation with me. Why have I spent so long on this area of interest? Well probably because the more I read and heard the more I was convinced that issues of technology and data and the way we use Artificial Intelligence, Big Data and the Internet of Things present us with some of the most significant ethical, moral and human rights challenges of our generation. When I then went on to consider what all these developments meant and might come to mean for the way in which we care for and support some of our most vulnerable citizens, I was convinced that these issues needed to be highlighted as of real significance and priority for the social care sector and for wider society. The advances in technology – not least in the ability to process gargantuan volumes of data, to develop and use smart technology for the person and in the home, the developing use of robotics and Artificial Intelligence –  are happening at break-neck speed. What was impossible last year is this year considered routine; what was unimaginable a decade ago is now technology which is redundant and obsolete. The way we decide, as a society, to respond to and develop further technological innovation, will to a large extent, determine the sort of future we create for both ourselves and our children. It is, I believe, as fundamental as that. So the range of issues that TechRights explores include the role of Big Data and data platforms; the necessity of creating robust ethical and human rights frameworks around the work we do; the importance of the citizen being involved in the design, ownership and control of the data which is gathered upon them. But given its focus on older persons care, one of the main themes is that of robotics. We have already seen care homes across the world begin to use robots in the care and support of older persons. Indeed in Japan the use of robotics has been significantly culturally accepted as normative. What about Scotland? Do we want to address the workforce challenges we face by using robots to care? Do we want to free up the over-stretched care home staff by using robots more? Do we envisage a time where the robot has the conversation with someone living with dementia rather than the human carer? The human rights frameworks that we work within and under were developed shortly after the Second World War. Indeed this year we celebrate the 70^th anniversary of the United Nations Declaration of Human Rights and that legacy down through the years has been invaluable in shaping modern society. But I would argue we have now reached a stage in human history where we need to re-articulate those frameworks and human rights to speak to a new age and new circumstances. We need to develop a human rights and ethical framework for a technological age of AI, robotics and Big Data. Simple reliance through case law and other juridical means we have will no longer protect our inalienable human rights. At the heart of this, I would suggest, is the discussion about whether or not we should have a human right to be cared for by a human being? Is that as inalienable a human right as the right not to be tortured or the right to life itself? At the very least we need to start to have that debate and begin to articulate the parameters and boundaries of what we believe human rights mean in social care in this technological age. I hope ‘TechRights’ will make a small contribution to that discourse. I leave you with the words of one of the foremost developers of Artificial Intelligence, the American Joseph Weizenbaum, who wrote:–

‘to substitute a computer system for a human function that involves interpersonal respect, understanding and love, is simply obscene.’

  Dr Donald Macaskill CEO, Scottish Care @DrDMacaskill