Dementia care: the next five years

Mark Ivory, new editor at the Journal of Dementia Care, spoke yesterday at the Margaret Butterworth Care Home Forum. This is a transcript of his talk. (2,712 words)

Good afternoon. So far as they can be separated, this is partly about policy and partly about politics. Where better to start than the Conservative party election manifesto? Pledges:

  • Delivering on the Prime Minister’s Challenge, “making sure that everyone diagnosed with the condition gets a meaningful care plan to support them and their family.”
  • UK will be world leaders in finding a cure for dementia by the target date of 2025.
  • All companies with more than 250 employees would be required to allow them three days of volunteering time each year, something the Alzheimer’s Society welcomed in the context of the Dementia Friends initiative.

It’s the one about volunteering, considered more broadly, that I really want to focus on. In case we were under any illusions that the Tories had dropped the rhetoric of the Big Society, there was a section of the manifesto with the heading “Helping you build the Big Society”. “Volunteering is at a 10-year high,” it boasts, “with 3 million more adults giving their time last year than in 2010.”

Indeed, the manifesto is quite expansive on the subject. It says: “The Big Society is a vision of a more engaged nation, one in which we take more responsibility for ourselves and our neighbours; communities working together, not depending on remote and impersonal bureaucracies.”

How does the manifesto think it might work in practice? Well, for example through the National Citizen Service more young people will be encouraged to serve in their communities as part of a broader voluntary movement. As it says: “We have always believed that churches, faith groups and other voluntary groups play an important and longstanding role in this country’s social fabric, running food banks, helping the homeless, and tackling debt and addictions, such as alcoholism and gambling.”

So the Big Society as a policy is still very much with us. And I, for one, am pleased about that. Dementia friendly communities and the Alzheimer’s Society’s Dementia Friends initiative – recently passing the one million mark and aiming for 4 million by 2020 – are examples of the kind of voluntary action envisaged in the Big Society. The PM’s Challenge three years ago foresaw 20 cities, towns and villages signing up to become more dementia-friendly by this year. According to the latest version of the same document, the PM’s Challenge on Dementia 2020, 82 communities have in fact joined the quest for dementia friendliness so far.

I will come back to dementia friendly communities as a manifestation of the Big Society. But I just want to note what the manifesto also says to qualify its remarks on the Big Society. It says that there are many tasks for which government is required – presumably along with the public funding which government, local and national, can make available. That’s an important admission, but one that I fear will ring hollow as public sector austerity deepens.

And deepen it will. Having looked at the Conservative manifesto, I had a look at Care England’s general election manifesto, which told me that older people’s services had suffered a 5.7% drop in overall fees for council funded residents in the last five years. Average fees paid by councils for the care of an older person in residential care were £480, 10% or even 20% below the generally accepted fair market price. Unless the Chancellor turns into Sooty and casts a magic spell, it is hard to see how the future will be different from the past.

The independent Institute for Fiscal Studies tells us that local government could lose around a fifth (19.7%) of its revenue from central government over the next four years. Since 2010 councils have tried to defend adult social care from the worst of the cuts, but according to the Association of Directors of Adult Social Services there is still £3.5bn less in social care budgets now than there was then and 400,000 fewer people are getting publicly funded help.

These cuts will cost central and local government jobs: 900,000 job losses are forecast for the coming four years (OBR) on top of the half a million lost since austerity began. As the IFS puts it, a little unnecessarily: “This would reduce the size of the government.”

And of course the Conservatives have said that they will seek to make further cuts of £12 billion to annual social security spending. To give an idea of scale, the IFS says that freezing all benefits and tax credits other than state pensions for five years would save that much and a little bit more (£13bn), but at the price of taking an average of £800 a year from 16 million families including the poorest. It is almost inconceivable that disability and incapacity benefits will emerge unscathed.

All the more so since David Cameron repeated his pledge this week to find “at least” £8bn a year for the NHS by 2020 without saying where the money will come from. If the government sticks to its commitment to find any extra money from cuts elsewhere rather than tax increases, where will the axe fall? Will local government be chopped back even more, when adult social care is already heading for a £4.3 billion deficit by 2020? The future of the NHS depends on a more community-oriented service and that won’t happen if social care is weak.

It is not impossible that the government will rethink its spending plans. Perhaps it will do what the Coalition did in 2010 when VAT was increased even though George Osborne said before that year’s election that he had no plans to raise this tax. But it seems highly unlikely. We have a government whose determination to denude the state by stripping away a further £33bn in public spending looks unshakeable.

Before returning to the subject of dementia friendly communities, I wanted to consider the Care Act briefly. I edited a supplement on the new law recently and in my eyes it lives up to its billing as “the most significant reform of care and support in more than 60 years.”

The mighty “wellbeing principle” is genuinely exciting, putting the onus on local authorities to promote the physical, mental, social and economic wellbeing of their citizens. It includes personal dignity, treating individuals with respect, and participation in work, education, training or recreation. It plays to people’s strengths, not just their weaknesses; to what they can do, not just what they can’t do. Just the kind of thing the Big Society should be about.

But the wellbeing principle, coupled with the new duty of prevention on local authorities, involves a huge change of culture in care services. Fifteen million people in England have long-term health conditions, including dementia, accounting for 50% of all GP appointments and 70% of hospital bed days. An estimated 25% of hospital beds are occupied by people with dementia, provoking awkward questions about whether the money could be more efficiently used in services centred on communities.

The idea is of course that health and social care, by jointly investing instead in early help to prevent or delay debilitating need, can break their expensive dependence on crisis services and save money – or at least make it go further.

Family carers will be front and centre. As the PM’s Challenge on Dementia 2020 says, the Care Act “marks a quiet revolution” in our attitudes towards carers. Their entitlement to an assessment and services has been extended and is now comparable to the rights of those they care for. “There is evidence,” the PM’s Challenge adds, “that providing carers with better information, training and coping strategies, including emotional and psychological support, improves their quality of life and is also cost-effective, with costs being off-set by reduced use of services.

The PM’s vision appears to be of a semi-professional caste of carers, supported by training to meet the emotional and practical demands of the role, more sympathetic employers and occasional respite care. Voluntary effort will be key. Once again the PM’s 2020 Challenge speaks of the evidence, namely that “providing support to carers of people with dementia in an informal rather than medicalised setting can reduce perceived stigma and that the voluntary and community sector is well placed to facilitate this environment.” It talks about “social action interventions” such as peer support or mentoring which it says voluntary and community providers can facilitate, tapping into and sharing the expertise of carers.

Now, it seems to me that this attention to voluntary action is commendable, nodding as it does to the Care Act’s wellbeing principle and the social and economic contribution of people living with dementia including carers. But it also seems to me that it has to be part of a harmonious balance between the statutory, private and voluntary sectors in every locality, each playing its legitimate role. Hospitals and GP practices are part of it, care homes are part of it, and professionals and volunteers working in communities are part of it.  We should be aiming for a symbiotic relationship between the professional and the voluntary, if we are not to put more stress on people living with dementia and their communities than they can bear.

When I was putting together my supplement The College of Social Work told me that social care assessments would look at strengths as much as needs, and “help people to help themselves”. It strikes me that there is a very fine line between “helping” people to help themselves and “leaving” people to help themselves. The first allows essential room for professional expertise; the second leaves a vacuum to be filled by the philosophy of Samuel Smiles and his notions of self-help.

And professional expertise is not just medical expertise, it’s social and psychological expertise too. Contrary to the myth of personalisation, people don’t always know what they want or what is best. A well judged professional intervention can help people to see what they want or need more clearly, or help them to see and achieve their goals more effectively. This need in no way detract from their independence and autonomy.

Writing about the Care Act in the supplement a social worker said: “For us, it should feel like a real opportunity to practise true social work again. This is social work that promotes people’s wellbeing and is attuned to their personal strengths and choices, and the resources of the communities in which they live.

I found a nice example in Leeds of that symbiosis between the professional and the voluntary or community sector I mentioned a moment ago, one of thousands I could have chosen. In Leeds, the council has been involved in a European scheme called Seniors Network Support (SeNS) in which community organisers are employed to tackle the social isolation of older people. The organisers coordinate groups of community volunteers to go out and make contact with them. The volunteers are “friendly, chatty people,” I was told, “who aren’t afraid to strike up conversations with strangers.” They talk to people about their interests, skills and things they would like to do, then support them to achieve their goals.

It seemed to me like a brilliant example of helping people to stay independent for longer. Mick Ward, the council’s head of commissioning, told me the story of a retired teacher whose isolation had turned to depression and an inability to cope with everyday tasks. Metaphorically speaking she was on an express train to statutory services, but the community project there brought it to a screeching halt. She was introduced to a project for Syrian migrants, few of whom spoke English and most of whom were disengaged from the place in which they found themselves. For her as a retired teacher who had lost heart with her house and garden, it was a good match: she taught them English and they did the gardening. The migrants were more engaged and so was she.

As Mick Ward said: “It’s very powerful if you can switch from someone who receives services to someone who contributes to the community.”

So there’s the Care Act’s wellbeing principle again, enabling people to make a social and economic contribution. It is a point that surely applies in care homes as much as in the wider community. The CQC, in its Cracks in the Pathway report on dementia care last year, devoted a section to “meaningful activity and occupation”. Residents spoke about being involved in household tasks such as dusting, setting and clearing tables, and going to the shops. “They let me do what I can, which is quite a lot, and I enjoy the company and everything that is provided for me,” said one resident. Voluntary action, if you like, in a professional setting, that all-important symbiosis.

To return at last to dementia friendly communities, the wellbeing principle was evidently a starting point for York’s Dementia Without Walls project. To quote the Joseph Rowntree Foundation report on it:

“An underlying premise of its work is that people with dementia have a contribution to make to society. Rather than constantly being seen as dependent, there might be an ‘interdependency’ to discover where people with dementia are naturally included and valued as essential to strong and diverse communities.”

The discovery of this “interdependency,” its precise mode of operation, I would argue, is something in which professionals should be inherently involved. JRF is clear that health and social care services will need to change over time to ensure that there is enough support for people living in the community, but isn’t there a danger that “dementia friendliness” becomes pretty wallpaper to hide the crumbling plasterwork of services underneath?

A York-based health professional expressed just such misgivings to me in an email to the Journal of Dementia Care a few weeks ago. She said: “The implications for practitioners are that we are deluding ourselves. I think the dementia friendly communities agenda has led to many of us taking our eyes off the ball. I think that, certainly in York, people in positions of power use stories of dementia friendly transport, police, or opticians, or a café or two, to hide from the reality of pitiful service provision, and postcode-lottery experiences of diagnosis and care. In dementia, as in all things, economic and educational advantage determines what services you access, the care you receive, and your quality of life. The dementia friendly communities agenda touches on none of this.”

Avoiding feelings of dependency is essential to people’s sense of dignity and self-esteem. I think it’s what Tom Kitwood had in mind when he wrote about “personhood”. For Kitwood, as I understand him, one’s sense of personhood is constructed and sustained in the social sphere. It implies recognition, respect and trust from others. Poor social interactions can undermine a person’s sense of self, leaving them unable to assert their identity.

In this regard dementia friendly communities ought to help give the recognition, respect and trust that people crave. It is hard to imagine what could be more important to the person with dementia who may feel that their sense of self is beginning to fragment and dissolve. But “respect” has to include respect for individual autonomy and autonomy is not always well respected in the overflow of compassion that characterises much voluntary action.

The sociologist Richard Sennett has discussed the “compassion which wounds,” the kind of well motivated but destructive do-gooding which assumes that everything we need to know about the other is already known. He notes that it is particularly destructive when done across a gulf of inequality – and we live in an increasingly unequal world. As he says: “The compassion which lies behind the desire to give back [something to the community] can be deformed by social conditions into pity for the weak, pity which the receiver experiences as contempt.”

So, as I said at the outset, I’m pleased that the Big Society as a policy is still with us. Perhaps, by 2020, we’ll be able to talk about dementia-friendly England, not just dementia friendly communities. But the impact of austerity on the community practitioners necessary to build them and keep them going worries me. Because, without them, there can be no such thing as the Big Society.

Mark Ivory is editor of the Journal of Dementia Care. He was speaking at the Margaret Butterworth Care Home Forum on 20 May 2015, at King’s College London. The Forum is hosted by the Social Care Workforce Research Unit at King’s.

About the Margaret Butterworth Care Home Forum

The Margaret Butterworth Care Home Forum is a forum for discussion and learning focused on dementia care in communal settings such as nursing homes, care homes and extra care housing.

The Forum, which is named after a passionate and innovative dementia campaigner, provides an opportunity for staff, carers and others with an interest in this area to gather and discuss means of improving the quality of care and life for people with dementia living in care homes.

The Forum is hosted by the Social Care Workforce Research Unit at King’s.

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