How do we meet the growing needs of an ageing society? We all have an interest in this question (even if sometimes we also prefer to avoid thinking too hard about it) and over the last couple of years I’ve spoken to many RSA Fellows about their experiences of how acute it becomes when people close to you need care and support.
Some of those Fellows contributed to a report we produced recently for the Joseph Rowntree Foundation on making decisions about care (my colleague Emma Lindley, who was one of the authors, neatly summarised its themes in a recent blog).
This week the JRF published another paper, Widening choices for older people with high support needs, which I heard about from the programme’s director, Ilona Haslewood, at a recent event. Its theme is how people can help each other meet their needs as they age, but it also offers an interesting case for why social projects should empower people to help solve each other’s problems, rather than doing it for them.
The report starts from the principle that the care of older people should not be a one-way street, based on agencies providing support to people who cannot meet their own needs. Instead, it argues that approaches based on mutuality and reciprocity – how people can do things together and help each other meet each other’s needs – allow older people to stay in their communities and make a contribution to them.
The report is clear that there is plenty of good practice out there, ranging from formal schemes such as Shared Lives, to informal arrangements such as peer support networks. However, what’s also clear is that rhetoric about helping people help each other can sometimes fall out of step with reality:
“Much is spoken and written about the centrality of mutualism to public service design and delivery, and the role of co-production in the transformation of social care and associated support. […] The reality on the ground for many older people with high support needs is very different.” (47)
The interesting question, then, is what makes alternatives to traditional care work. The report picks out a few success factors, and here are three that seem good general principles for any project that depends on reciprocal sharing of time and skills:
- All parties involved need to recognise the mutual advantages as benefits of working together.
- It needs to spell out the practical benefits of working together (for instance, participants helping each other overcome barriers and “life’s obstacles”)
- It’ll work best if is generated, designed, owned and led by those directly involved
Are these initiatives genuinely grounded in the needs of the people they benefit? Do they make the most of the skills that people have to offer?
The report also lays out an interesting challenge for organisations like the RSA. It generously cites work that we, NESTA and others have done to encourage and support social enterprise – but asks, in effect, whether all the projects we support take the ‘social’ bit seriously enough. Are these initiatives genuinely grounded in the needs of the people they benefit? Do they make the most of the skills that people have to offer?
Put another way, the idea – the model or approach you take to solving a problem – cannot be everything. Working with RSA Fellows, we’re keen to do everything we can to encourage good ideas to grow. Our Catalyst programme, for instance, provides funding and support to socially beneficial projects. What I’m left wondering about, though, is the subtler question of the kind of relationships and behaviours that need to develop (if the above principles are sound) for a good idea to survive in the long run – and to offer the greatest possible benefit, both direct and indirect, to people involved in it.
Returning to the earlier warning about rhetoric outpacing reality, it’s not enough to pay lip-service to this ambition: what’s needed is advice on how to make it work in practice. One way we can rise to the challenge is to share examples of projects that demonstrate genuine reciprocity where we find them. To that end, who out there is solving a problem by helping people solve it for themselves – and what can we learn from how they work?
Sam Thomas is the RSA’s project engagement manager, responsible for improving how people engage with our programme of action and research. Follow @iamsamthomas on Twitter.
Our society is ageing, and the scale of our demographic challenge is immense. To choose just one of several striking projections, between now and 2050, the number of people over the age of eighty will triple to around eight million.
At some time in our lives, all of us will be faced with decisions to make about older people’s care, be it our own, or a loved one’s, whether it is in a professional, personal, or voluntary capacity. How will we make such decisions?
At some time in our lives, all of us will be faced with decisions to make about older people’s care
On reflection, the question is not so much about adult social care policies, but the complexity of choosing between different aspects of ‘care’ which often look very different from conventional models of state provision. The pertinent questions become: Who do we trust to help us make these decisions? What are the risks in making one choice as opposed to another? Should physical safety be prioritised above wellbeing and quality of life?
We explore many questions of this nature in our recently released evidence review: ‘Improving Decision-Making In the Care and Support of Older People: Exploring the Decision Ecology’.
Early this year, the Joseph Rowntree Foundation, as part of their Risk, Trust and Relationships in an Ageing Society programme of work, put out a call for a review of the evidence surrounding risk and trust in an ageing society. The RSA’s proposal was accepted, along with a contrasting but complementary proposal from a team at Brunel Institute for Ageing Studies. We focussed our evidence review using decision-making as a lens through which to explore the broader issues. The team from Brunel took a different approach, reviewing contrasting bodies of literature from disciplines including psychology, political philosophy and gerontology.
On Wednesday last week, the two evidence reviews were published at a launch event at Brunel University. I presented our review, and in preparing what I had to say, I found myself pleasantly surprised by the piece of work we produced.
The process of compiling the review involved several members of Staff from Social Brain and Connected Communities and was not the smoothest or easiest of processes. In all honesty, while we were fascinated by the content and relevance of the work, by the time the final draft was signed off, the process felt so protracted that I think we were all relieved to move on to other things.
So, when I came to talk to an interested audience about what we found, it was rewarding to discover that I felt confident in the value of the overall message of our evidence review. (More generally, it definitely helps to have a gap between completing a piece of work and launching it, which gives you time to appreciate the document as something you have produced, while being free from the gruelling process that produced it.)
The Decision Ecology
Our report paints a picture of the ‘decision ecology’. Jonathan Rowson coined this term to capture the complex social context in which decisions are made, including the diverse range of actors including the older person, their family, friends, neighbours, professional carers, health providers, volunteers, acquaintances and the community at large.
At the heart of this ecology is a triad, consisting of the older person, their informal carers and supporters (such as friends and family) and their formal carers (professionals and practitioners). Like any threesome, this triad is unstable, and the balance of decision-making power tends to be weighted towards the professionals and practitioners.
The insider knowledge that family members have about their older relatives is all too easily sidelined or overlooked, and professional ‘expertise’ takes pole position. The danger is that important personal preferences can be neglected, and decisions made to favour institutional or administrative convenience.
The insights of the Social Brain perspective tell us that the traditional view of decisions being made on the grounds of logic and rationale is at best inadequate. Decisions are still implicitly framed as individual, conscious and rational, but they rarely are. In reality they are influenced by affective, unconscious and social factors, including our cultural biases, negative stereotypes and risk aversion. Because of this, we need to think very carefully about whose perspective (or decisions) should be given precedence, and on what basis.
To make good decisions, it is vital that we build trust. There are various tools and strategies that can help us do this, and taking seriously and making space for personal narratives is one of them. The stories we hear and tell can change attitudes and be emancipatory and empowering. This emphasis on the unrecognised relevance of narrative was a key part of the report.
Challenging declinist stereotypes of ageing is part of our responsibility, along with being reflexively critical about our attitudes to risk.
Most importantly, we need to do everything we can to enable genuine partnerships between care providers, care recipients and their families and supporters. The responsibility for decision-making should be shared as equally as possible, and efforts made to include and respect everyone involved. Challenging declinist stereotypes of ageing is part of our responsibility in this, along with being reflexively critical about our attitudes to risk.
At some point in your life, perhaps quite soon, you will be playing a part in this decision ecology- it is worth reflecting now on what kind of part you want to play. You could do worse than start by reading our evidence review!
Last month my colleague Sam McLean posted a blog asking whether social capital was necessarily always a good thing. He was right in saying that too often we take it as read that strong social connections and a high level of trust create better outcomes in every scenario and on every occasion. While it is true that there has been a long standing debate about the merits of social bonding capital (connections within groups) vs. social bridging capital (connections between groups), this has really only skimmed the surface of what is a much more nuanced issue.
To give you a better sense of what these nuances actually look like, I’ve collated a few interesting examples about how complex social capital plays out in semi-formal and informal care settings. Before I lay these out, the first thing to mention is that, broadly speaking, social capital is a good thing when it comes to caring for older people and helping to maintain their independence. Eric Klinenberg’s famous study of the Chicago 1995 heat wave found that mortality rates among older people were much lower (30 per cent) in the neighbourhoods where they trusted others and felt safe to leave their buildings. Likewise, we now know from the work of John T. Cacioppo and others that health outcomes are directly linked to levels of loneliness and isolation. The risk of Alzheimer’s is said to be twice as high in older people who are lonely compared to those who are not.
All of that said, there are a number of reasons why we should be giving social capital a closer inspection, particularly when it comes to informal care and adjusting to an ageing society. The following points illustrate that the relationships and trust we have with others are neither homogenous, nor stable over time, nor indeed always positive:
1.There is a clear distinction between the support provided by neighbours, friends and family – the kind of care that older people receive is often ‘relationship-specific’. It has been suggested by some academics in the field of social care that spouses are the ones who provide both deeply emotional and physical support, adult children the emotional and instrumental support, and friends and neighbours the lighter companionship. No doubt all of these are important to older people but it does highlight the fact that neighbours and casual acquaintances are no substitute for close family when it comes to doing tasks that are of a very personal or physical nature (an important point when we think about housing policy, as my colleague pointed out recently)
2. Relationships are fragile and likely to change in times of illness – in a report on the social exclusion associated with ageing, AgeUK points out that the social stigma attached with certain illnesses can diminish or entirely sever even the strongest of friendships. The report includes the story of one man who felt like a ‘social pariah’ after his diagnosis of dementia: “Acquaintances would ‘pretend’ not to see me if I was in their presence and people stopped inviting me to dinner or events. They assumed I had changed in ways that I hadn’t, that I wasn’t the same person anymore and wasn’t worthy of conversations”. Friendships do not always weather the storm of illness.
3. Friends and family can be hyper-controlling and sometimes the best individuals to help older people with managing risks are those they have no relationship with at all – Fear can pervade the close relationships that older people have with their relatives and friends, often to the extent that the latter can become overly protective and risk averse. Care from close relatives and friends can turn into ‘containment’, severely limiting people’s independence. The same AgeUK research highlighted before found that some older people feel more comfortable discussing things with strangers who are impartial and who have ‘no vested interests’.
4. Older people do not want to be a burden to friends and family – Surprising research by Ipsos MORI shows that older people are far less enthusiastic about living with their children in old age than are their children. This is in part because they do not want to receive ‘reluctant attention’, but it is also perhaps because they fear the health consequences that may affect their spouses, children and close friends. Indeed, CarersUK found that nearly half of all carers providing significant support were in debt and affected by stress as a result of caring. Few would want to bring those kinds of difficulties on their loved ones.
If any of the above proves of interest, look out for an upcoming report from RSA Projects on risk, trust and an ageing society.