New age: what the pandemic tells us about what we’re getting wrong on social care and ageing.
One of the most damning signs of the ageism and disablism that runs through society is that our expectation of what it means for someone to live a fulfilling life drops dramatically as soon as they need help to carry out the everyday tasks like washing and dressing that come so easily to most of us. So it’s shocking, but not surprising, that the lives of older and disabled people seem to have been valued less in this pandemic.
As the number of community infections and hospital deaths is falling, infection and death rates in care homes are, at the time of writing, continuing to rise. Despite the idea of “shielding” older and vulnerable people from the disease being a core part of the government’s pandemic response, its lack of investment and focus on the social care sector means that those who rely on getting help with intimate tasks – whether they live in a care home, or get that help at home – end up exposed to greater risk than the rest of us, as care workers are forced to work without adequate protective equipment and care providers have gone for weeks without sufficient testing for residents and staff.
The dire situation facing people who rely on care services has created a general sense of “something must be done”. But as health and social care secretary Matt Hancock launches a badge for care workers – an initiative that will barely make a dent in the problems facing social care across most of the country – what are the concrete steps that must be taken to ensure that this doesn’t happen again?
We need more than applause
The social care crisis is often described as a problem of underfunding. After a decade of cuts, the King’s Fund report that government funding of social care is £300m a year lower than it was in 2010 and more people are requesting means-tested state support for care, but fewer people than ever are getting it. The heart-breaking result is that, according to Age Concern, an estimated 1.5 million older people – that’s one in seven of over 65s – go without the essential help they need with everyday tasks.
But the problems with the way we do older care do not stop at funding. There is a deeper issue, which is the way in which we conceive of care work. Caring is regarded as low skill work – and is low paid. Many homecare workers do not get paid for travel time between appointments and so don’t even end up making the minimum wage. Yet as anyone who’s ever observed a carer at work will know, care work is anything but low skill and is emotional as well as physical labour.
This is a direct result of societal ageism. Someone with Alzheimer’s is just as capable of experiencing joy as the rest of us; someone who needs help to wash and dress is no less capable of stimulating conversation. Yet care work is seen as being about managing someone’s physical and mental decline, rather than supporting people to live rich, fulfilling lives. And the way it is often commissioned and structured reduces it to a series of physical tasks, when the reality is that done well it is so much more. The psychoanalyst Isabel Menzies Lyth documented in the 1950s how hospitals organised nursing the ill and dying as a series of fragmented physical tasks, the same task repetitively preformed for many patients, each patient cared for by several different nurses in order to protect them from the emotional strain of death and loss. You only need to look at the way in which care workers are expected to zip in and out of people’s homes with slots so short they force them to choose between washing and feeding someone, to see that too much of this approach still lingers in the way we conceive of care today.
One of the most brilliant scientific advances of the last century has been the stretching of human lifespans; one of the least edifying aspects of collective human behaviour has been our failure to adapt to the fact that it means people have to contend with longer spells of physical and mental decline in their last years of life. As we continue to avoid an open discussion about the relative responsibilities of the state, the family and the community, the paring back of state support has resulted in family members picking up more care work. Too often, that’s low paid women in their 50s and 60s with scant pension provision themselves, and who struggle to combine caring responsibilities for their older relatives with earning enough to get by.
While shielding older people who rely on care services was always going to be a logistical challenge for government, there has been far too little priority given to addressing the crisis in our care services. Even as some care workers take extraordinary measures – such as moving into care homes for the duration of the lockdown to protect residents and their own families – the government has failed to ensure there is adequate protective equipment and testing capacity. Care home managers and home care providers report grappling with impossible moral dilemmas with scant guidance from the government: how do you prevent coronavirus spreading when your staff don’t have protective equipment? Do you allow relatives into a care home to say goodbye to their loved ones or are the risks to other residents too great? Do you accept a new resident being discharged from a local hospital who needs a care home place but who hasn’t been tested for coronavirus, potentially jeopardising the lives of the people who already live there?
What needs to change
First, the way in which care is funded needs to be transformed. If you are unlucky enough to get cancer, the cost of your care is covered by the NHS. But if you get dementia, most people are on their own when it comes to the costs of their care – the state will only step in when you have spent most of your savings, and even then, cuts to local authority budgets mean it is increasingly difficult to get state support.
This makes no sense whatsoever. We collectivise the risk of getting ill from most diseases through the NHS. Those most able to contribute pay towards that through general taxation. We don’t say that those unlucky enough to get ill have to pay more than those who do not.
If anything, the universal principle makes even more sense applied to social care than it does healthcare. People will always be reluctant to save money towards and spend on care services; we don’t save enough to enjoy the healthy periods of our retirement, let alone for the miserable prospect of getting dementia and needing to move into a care home in the years before our death. And underfunding social care puts undue strain on the NHS. As long as we are expected to meet the costs of our own older care, people will tend to spend too little on private care services and end up requiring more expensive care on a hospital ward instead. The risk is that the less we collectively spend on social care, the more pressure the NHS will come under, the longer waiting lists will get, and the more the NHS will start to resemble social care’s two-track system as people opt for private health insurance.
So personal care needs not just to be funded properly, but to be made available free at the point of delivery, as it already is in Scotland. We also need to pay care workers more and recognise their work is anything but low skill. Lengthening lifespans come with a societal price-tag, and it’s one we are more than able to afford.
Second, we need a more explicit debate about where the responsibilities of the state, families and the community start and stop. The state can’t provide love and companionship but it can and should provide a basic standard of professional personal care. While the state can’t replace loving and kind relationships, it can certainly affect them. Expecting families to do too much, especially in situations that require skilled professional care, can negatively impact on family relationships, and it assumes that all older people have family they can rely on. As Alex Smith lays out so well in his chapter, we also need a greater focus on the role of community in creating the love, companionship and emotional support to guard against loneliness and isolation at any age.
Third, we need to fundamentally challenge ageism wherever we find it, including in ourselves. No one wants to grow old in a world where it’s considered to be enough to be free from physical harm in your last few years. But ageism is a funny kind of prejudice: like other forms, it is inculcated from a young age, but what sets it apart is that what we recoil at, and what we are ultimately all fearful of, is what we will one day become. Tackling ageism will mean confronting our fear of our own deaths.
Making the care case
The biggest barriers to achieving all this are the latent ageism that we need to root out, the sense that this is all too uncomfortable to talk about, and the myth that we simply can’t afford the costs of ageing as a society.
On the funding, we need to stop trying to link the funding of social care to wealth taxation. It’s easy to see why politicians might think this is a good idea: there is collectively a great deal of unearned wealth in the property of people aged over 65, and it comes at the expense of a younger generation who have been locked out of an overheated housing market. The cost of housing is a zero-sum game. Surely it makes sense to put the proceeds of a collective tax on wealth towards the funding of social care?
But wealth taxation is hard to make the case for. Taxes like inheritance tax involve a large one-off payment rather than a steady contribution year-on-year, which feels like a bigger hit. That’s why Labour’s 2010 attempts to seek a cross-party consensus on funding free older care through a wealth tax ended disastrously. The case for greater wealth taxation is winnable, but it’s difficult, and attaching it to social care could stymie any attempt to find the sustainable funding care desperately needs.
Instead, we need to take a more pragmatic view. The NHS is so popular that with a bit of political leadership the public will happily pay more for it, particularly in the wake of the pandemic. Income tax is still a progressive tax, if not as progressive as wealth taxation. Polling from 2017 suggested two thirds of the public would be prepared to pay more tax in order to ensure the NHS has the funds it needs. Gordon Brown’s penny on national insurance for the NHS was supported by 76% of voters when it was introduced in 2002.
Politicians can make a case for putting social care and the NHS together by reminding us that it’s our mums and dads, aunts and uncles, grandparents and friends who are being failed and will be failed by the system. Don’t listen to those who say it’s too thorny or difficult; they’re just making excuses for a lack of political willpower.
If funding is the easy bit, much harder is taking steps to tackle the ageism and fear of decline that is holding us all back. That’s not just down to government, but to all of us. There is an emerging evidence base that suggests that sustained intergenerational relationships help to temper ageist attitudes within society. There are important initiatives in civil society that seek to do this: North London Cares is a charity that matches older and younger people living in the same area together to provide mutual companionship; HomeShare schemes connect people who might benefit from low-cost accommodation with older people with a spare room who need light-touch support to stay in their own home. They both seek to build mutually-beneficial relationships that create bonds of love, care and commitment that cannot be fully emulated by paid professional care. The mutual aid groups that have been formed in communities across the country will also be building these sorts of relationships. Political leadership is fundamental to creating a better world in which to grow old, but it’s not enough. Emerging from the coronavirus crisis with a shared commitment to providing dignity in later life is down to all of us.