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

Apologies for the delay in writing up this blog but it is something I did not wish to write. For some time my mum has been living with dementia. As a family we adjusted to my mum’s needs as she progressed in her journey; from thinking that there was something wrong, which she could never put her finger on to visiting the doctor and discussing worries, ultimately receiving a diagnosis. To be honest the diagnosis was largely confirmation of what we already suspected and gave us a focus for discussing how we could adjust the support we offered to my mum to ensure she could continue to live well. As a family we thought we had been proactive and put plans in place for future needs. Power of Attorney, DNR had been openly discussed and agreement reached about how to honour my mum’s future wishes. However although meaningful discussions had happened, what we were not prepared for was the emotional impact of having to follow up with some of these decisions. My mum started to leave her home at night, and concerns were raised about her safety and the risk to her wellbeing, this ultimately led to a hospital admission and numerous reviews and plans for her long term care. We attempted to support my mum back home and enjoyed a weekend with her in her home. However this required 24 hour support with my brother or I present to maintain safety, which was not sustainable in the longer term but was an attempt to honour my mum’s wishes as expressed in her POA which was that she would live and die within her home with extra support if this was required. Ultimately my mum moved to a care home and slowly we are adjusting to this change. My mum is taking an active part in the routines of the home in maintaining the garden, doing some cleaning up of dishes after meals and has a sense of pride in what she has been able to achieve in the short time she has been there. I have been working in care for over 30 years and hope that I have been able to advocate on behalf of providers and the positive impact that they can make but my own reflection would be that the decision to support my mum to move into care has not come without a profound sense of loss and guilt. My mum has been a strong independent woman, who has dealt with major events throughout her life in a resilient fashion and shown that not only would she survive but also thrive. The move to a care home appeared to shrink her as she attempted to adjust to her new environment, which I think she believes to be a hotel she is temporarily living in, the gardening and cleaning being something she is expecting to be paid for, which my family are happy to help facilitate. The fear associated with my mum moving into care is wrapped up within feelings of my mum losing her sense of self and the coming to terms with how we can support her to maintain a level of independence and a sense of agency. My mum has been supported by some wonderful staff who when spending time with her appear to intuitively have developed an understanding of how to best approach my mum, they know that gentle banter and a humorous interaction will be more successful in fostering a relationship with her. My mum’s consistency in reaction to these individuals gives me a sense of content that when supported by such staff that she is safe and well and family members are of the same opinion. We are a reasonably articulate family with experience of health and social work services and reflecting on the last year I am aware of outstanding issues which I do not think have been resolved to our satisfaction. On diagnosis I expected and requested post-diagnostic support, more than a year after diagnosis we still await this and when it is, if it is offered, it will be at a point when my mum is not able to use it meaningfully. Attempts to arrange home care and daycare opportunities did not appear to be supported by statutory services and the response from statutory services appears to be have been in the light of major concerns about health and safety, concerns about imminent danger, rather than a planned therapeutic intervention which may have delayed the move into a 24 hour care setting.   Brian Polding Clyde Local Integration Lead, Inverclyde & West Dunbartonshire

When is a village not a village?

I come from a long line of villagers! Indeed my siblings and I are the first in a family line stretching back hundreds of years who were not both born and brought up in a village. So the nature of village life and the difference between that and other forms of settlement has always intrigued me. My interest has increased in the last few months with the growing number of people talking about ‘care villages.’ So I set out to try and discover what these ‘villages’ were all about. Care villages have been with us for some time. They are commonplace in the United States, Australia and to a lesser extent in parts of Scandinavia. In the US, about 6% of all over-65s live in self-contained retirement flats or bungalows with communal facilities and on-site care provision. Their growth and development in the UK have been slow but is now gaining rapid pace, indeed there is even a London based organisation called the Associated Retirement Community Operators (ARCO) dedicated to their development and increased prominence in the health and social care landscape. However, a lot of the commentary in the last year about care villages has come from a growing awareness of what has been happening in Holland. The principal idea behind the care villages is that you buy or rent your own apartment within a built environment and as a result have access to care and support services when you need them within close proximity to your flat or house. They are all different. Some have on-site shops, cafes and restaurants and offer a range of activities ranging from golf or fishing, tennis to bowls. Others have dedicated buildings to support you when you grow older and less independent, develop dementia or have had a stroke etc. Recent criticism around some of the care villages has centred around so called ‘exit fees’ which, depending upon the length of stay in a village, can be up to 10% of the original property purchase price. However, in some cases it can be as high as 30% after just a few years. The Law Commission in England[1] has declared that such fees are causing ‘anger and distress’. Providers argue that such ‘exit fees’ enable weekly or monthly charges to be kept low. Without getting into the contractual detail, it’s worth exploring some of the much vaunted Dutch models. The community which is often quoted and heralded is at Hogeweyk, thought to be the world’s first ‘dementia village’, which is near Amsterdam.[2] This is a self-contained village for individuals who have advanced and ‘severe’ dementia. It has its own supermarket, beauty salon and leisure centre. Hogeweyk is a gated community where 150 residents live in six-room houses, each designed around one of four ‘lifestyles’. These are selected for residents after tests and interviews alongside their families. Residents are placed according to their former lifestyles which is meant to establish continuity based on reminiscence therapy and its focus is on familiar environment. There is a permissive philosophy which grants small ‘freedoms’ to individuals within a boundary of support and self-contained security. There is a developing desire in many parts of Scotland of the need to adopt the environmental reminiscence model which Hogeweyk has successfully promoted. However it would be erroneous, I believe, to think that reminiscence environmental and design approaches can only be adopted within a ‘village’ as understood at Hogeweyk. This is also care which comes with a price, partly because of the strong State support for such models within the Netherlands. The Netherlands spends 4.3% of its GDP on long-term care, the highest in the OECD. Scotland spends a lot less. So what does all this have to say to social care in Scotland. Well, firstly there is a growing number of ‘care villages’ in existence, being planned and starting to be developed. [3] But might I suggest that it is important that we take a step back and reflect on what it is that is being developed in our midst. There have been a number of voices being raised in concern at such developments. Some are alarmist, others are worthy of attention. Have ‘care villages’ a validity and is this a trend which is illustrative of societal change at a fundamental level? Or are they a concept which might lead to exclusion and fragmentation within communities? The classic dictionary definition of a village is that it is ‘a group of houses and associated buildings, larger than a hamlet and smaller than a town, situated in a rural area.’ But most folks who live in a village, such as the generations of my family, would very quickly say that that definition only paints part of the picture of what village life is really like. They will rather talk about it being a place where they belong, where you feel connected and involved, included and valued, where you feel safe, are known and recognised; that each has its own character- and that each has its own characters! Now granted this is maybe a bucolic image – because for some people villages can exclude, can make you feel you don’t belong or fit in or feel welcome. But, in general and for the majority, villages are more than just a set of buildings – it is the people who make the village. But what about care villages? Recently I wrote a piece for Architecture and Design Scotland called ‘Re-imagining Age and Home’  about the concept of the city centre becoming a place where older people could feel as if they belonged; where care homes and accessibly designed individual accommodation could flourish, and which in turn would become caring places. I suggested that we are now faced with a real potential to redesign our city and town centres as positive locations to grow old in and to become places of age acceptance. Technology enabled care can re-connect and renew not just individual lives, but entire communities. Is there an issue that some models of ‘care village’ serve to withdraw people from connection or at least only enable connection and relationship with a limited few? Do we want to isolate the reality and visibility of people living with advanced dementia and palliative and end of life into locations separated off from the mainstream community? Is there a socio-economic issue that we risk creating communities of the like, both socially and by default diminish diversity? Is there a danger that we are sub-consciously creating a message that older age needs to be distant from the centre rather than at the heart of our society? Or are we just recognising the changing nature of the human person which wants increasingly, some would argue, to be ‘an island apart from the main’? I acknowledge many of the proposals and plans speak about inter-generational living but it might be argued that a gated community (for whatever reasons the gate is there and in whatever form the gate exists) is still a community excluded from the rest? I think we need to start to ask these questions and also to, as a society, begin to explore what our answers might mean. But I also wonder if we need to re-vision our concept of the village and create it into an urban model for care and support? I mean by that, why cannot we re-imagine a care village – to make it not a community that is gated and separate but rather a ‘physical but invisible’ bonding and binding of a set of physical buildings in a community, such as a housing with care building, a care home, a specialist dementia unit, a community care hub, an inter-generational centre, a mixed nursery and older person’s day support centre? The connections would be not that they are all behind a physical boundary but rather that they are in a real connected partnership. They are places who collaborate together, share commitment and share resource. There is, I believe, a real opportunity for homecare, housing support and care home providers to re-imagine care around the person and to form partnership and co-productive re-design models not just with those organisations who provide care and support but those who receive it and their families. That might be a model for a village or town with care at its centre. The Scottish Care National Care Home Conference, ‘A caring place’ will explore some of these issues and ideas in different sessions throughout the day, and indeed we are pleased to announce that the University of the West of Scotland and the School of Innovation at the Glasgow School of Art are starting a project with us in the next few weeks around the future vision for care homes in Scotland. To paraphrase the old African saying, that it takes a ‘village to raise a child’, I would suggest it ‘takes a village to grow old in’ – it’s just that we might need to change what we define as a  care village?   Dr Donald Macaskill   [1] https://www.lawcom.gov.uk/project/event-fees-in-retirement-properties/ [2] For the story of Hogeweyk see  https://www.theguardian.com/society/shortcuts/2018/mar/12/life-dementia-village-development-kent-hogeweyk [3] Some links to existing villages and recent news stories about plans for new villages in Fife, East Renfrewshire and elsewhere: http://nethanvaleretirementliving.org.uk/ http://www.heraldscotland.com/news/13157026.Plans_revealed_for_Scotland_s_first_retirement__mini_town_/  http://www.scottishhousingnews.com/19442/plans-unveiled-new-methil-care-village/  http://www.scottishhousingnews.com/19362/250-home-retirement-village-planned-newton-mearns/