When I was 16, I spent two months in Italy with my maternal grandparents – then both 88. My grandmother had fallen over some months previously and was bedridden, but my grandfather was still active, physically and mentally; we would regularly play Scopa – an Italian card game – together. His memory rendered him unbeatable.
The family would take it in turns to attend to my grandmother; the more senior adults doing the more serious jobs such as cleaning her, with me doing the softer jobs: combing her hair, giving her a manicure, applying lip salve. When she was very sick, my young cousins and I took it in turns to do the nights. The community nurse, Sabino, visited daily, taking coffee with us in between administering medications. Thirty years later, we are still friends with him. Both grandparents died aged 89, cared for almost exclusively at home (at the very end, my grandfather went to hospital) and by the family.
So it has been for all my elderly relatives in Italy, all of whom lived with, or close to, family. So far, pretty idyllic. That wasn’t the case for my London-based aunt who, because of geographical sprawl and tragedy, ended up in a residential home at the age of 92 – sagacious but frail – and died there three months later. Her main carer, before that, had been my 86-year-old father who most days made the unsustainable three-hour round trip to see her. The last time I saw her in the home, she lamented the lack of family around her. Surrounded by apricot paint and floral soft furnishings, neither of which she had chosen, I cried, feigning a bad cold. The home was nice, but she didn’t leave her life as she had entered it, surrounded by loved ones. And when family matters to you, as it did to her, that is a big deal.
Elder care are two words that strike fear into even the most optimistic soul, because, who really wants to think about getting old and frail, aching and dependent? And when you do have to think about it, because you are at that gate, or a loved one is, you realise you are looking at a fairly challenging landscape. In the next 20 years, the number of people in England over 85 – the most likely to need elder care – is set to more than double, projected to rise from nearly 1.3 million people to just under 2.8 million. This is our fastest growing group (remember that when I talk about the ballot box later).
Added to this, there was a £160m cut in real terms in spending on social care for older people in England in the past five to six years, meaning fewer of them now have the help they need. Age UK predicts that an extra £4.8bn a year is needed just to meet the most basic of elder care needs (such as helping an older person get dressed or washed). Instead, further cuts are predicted. The recent budget promised an extra £2bn over three years, which is a) not enough and b) there’s no indication of where it’s going to come from. Unless it’s “new money” it will just be taken out of someone else’s budget.
Get cancer and your care is paid for. Get dementia and it’s a different story
Sally Greengross, chief executive of the International Longevity Centre, says, “Things have changed enormously because the population has changed – there are many more older people than there were. Part of the trend now is to live longer but one in three of us is going to get some form of dementia [those with dementia account for 80% of people in nursing homes in England, Wales and Northern Ireland] and we will need some sort of care.”
The NHS was founded in 1948. Right at its birth, social care, from whence elder care is funded, and health – doctors, hospitals – were separate branches of the NHS family tree. Nevertheless, in the past 10 years or so, the NHS, like a helpful sibling, has been propping up the social care system to the tune of 16% in 2015-16, equivalent to £1.33bn, something that insiders say is unsustainable and undesirable. If you are ill, your care is free. If you are old, your care might not be – it all depends how much you are worth. Get cancer and your care is paid for until you get better or die. Get dementia and it is a different story. This wasn’t so obvious, 10, 20 years ago when there were far fewer elderly people, but now it matters very much indeed. The Local Government Association estimates that there will be a £2.6bn gap in three years between the money needed and the money in the pot. Caroline Abrahams, charity director of Age UK, says, “If you or I have a medical problem, we go to the GP, who refers us [to a specialist], and we don’t pay. But with social care, very early on it’s about how much money you’ve got in the bank.”
But hang on, you might be thinking. This all sounds a bit negative – I read reports recently that say we’re all living longer, especially if we are from South Korea. That’s true, but there is a difference between life expectancy (going up) and disability-free life expectancy (going down) all with less access to help. In other words, yes, we are living longer, but with increasing needs. By our late 80s, one in three of us will have difficulties with five or more activities of daily living such as washing, going to the toilet or eating.
Although both health and social care are paid for by our taxes, the way they are handled is different. The NHS is funded centrally and social care funding is given to local authorities (councils) from the Treasury according to various criteria. There is no separate allocation for elder care within social care, and how much is allocated to it is decided at local authority level depending on what else is needed within that borough. There may be some adults with disabilities whose needs are very high, for example, who, quite rightly, need a lot of the social care budget. This is why there is such a discrepancy around the country.
The NHS, justly, gets a lot of press, but elder care? Not so much. This is probably because of a mixture of things: healthcare seems relevant to all of us, but elder care is something we can shove into a drawer to think about later. “It’s not a very sexy issue,” says one campaigner, “and we don’t like to think of ourselves or our parents getting old. And politicians know that, even if they put a lot of money into it, they won’t get a lot of reward at the ballot box.” Perhaps that will change when you consider the sheer number of elderly people who can still vote, and the power that they will hold.
While facts and figures are all very good, what does this mean for you or your loved ones? Let’s imagine someone called Donald, who lives in England. Donald is 85 and frail. He needs help to carry out basic tasks such as dressing and washing. Or maybe, later, his care needs will be more encompassing and he will need to go into a home (a nursing home and a residential home are two different things: the former provides medical care and costs more). What then? Donald’s local authority, accessed via social services, should provide him with an assessment of needs, regardless of his financial status.
That is really the only free bit and, even then, there have been cases of some desperate local authorities trying to charge for this (which they are not allowed to do). After assessment, he should have options and these may include a carer at home. But wait! This will only apply if Donald is worth less than £23,250 – that is including all his savings, his house, everything. (In Wales, the figure is £23,750 and in Scotland £25,250.) There were talks of this rising substantially, to £118,000 in 2020, but that has, according to an insider, been kicked into the long grass. If Donald has any more than that, he has to fund, and pretty much find, the care himself.
According to Paying For Care, weekly fees for a home start at £600. In London, £1,000 is not unusual. And in 96% of cases, self-funders tend to pay more – 43% more – than the local authority would have to pay for a room in the same home. In effect, the self-funders are propping up the local authority, which has bargained to drive down the price it pays for beds in homes to stay within budget.
The picture for LA-funded care, at home or in homes, is bleak; this is because it is not financially viable for a lot of home care providers and nursing/residential homes to provide LA places when the private market is so much more lucrative. If you were a nursing home and you could get nearly 50% more for a place and you had a business to run, would you take a private client or a local authority one?
There are now more than nine million carers in England looking after family members
Part of the huge problem we are facing – funding is the big one – is that our health and social care are not integrated and many people now think they should be. “We think it’s a good idea to join things up,” says Abrahams. “We think that for a very simple reason. The people who typically need care are older than 85 and the reason they need social care is because they’re not very well: they may have heart disease, arthritis and may be struggling to look after themselves. Many are spending lots of time engaging with the NHS and they are in need of social care. So it’s much more helpful if all those people are talking to each other. I’m sure if we started again [with the NHS], we’d have it all in one place.” But you still need funding to integrate, and funding comes from taxes and no politician wants to touch that hot potato.
There are now more than nine million carers in England caring for family members; two million of them are over the age of 65 and 417,000 are, like my father was, caring for his sister, over the age of 80 – more than a third of these over-80s provide 35 hours of caring a week. Old people caring for old people. Furthermore, two-thirds of older carers have a health condition or disability themselves. “Without these carers, the whole system would fall to bits,” says Greengross.
You don’t have to be a social scientist to work out that if very old people are caring for older people, that will affect their health, which in turn will make them more in need of help. It is all rather short-sighted.
That rather idyllic scene I described at the beginning isn’t possible or desirable for many – the culture in the UK is usually different, which makes that sort of pooled help, the sharing of the “burden” I described, more difficult. In Italy, none of my elderly relatives are isolated because their children all live with them or are so close that they can bring each other a cup of coffee without it getting cold. Some old folks in this country have no family to look after them or the family simply can’t. In an ideal world, those who can and want to should be able to look after elderly loved ones, but with help as and where needed – with the heavy lifting for instance – not just left to languish and having to fight bureaucracy. There was a letter to the Observer last month from a reader who had looked after her elderly mother in 1993, talking about “the gulf between the soft-focus image of caring for an elderly relative and the grimy reality” and the “lavish by today’s standards” help she got from the council, “but I still suffered from sleep deprivation, stress and physical exhaustion. I was expected to lift my mother from her bed on to a commode, a task usually undertaken by two paid workers.” This woman lasted six weeks before giving in to her mother’s “pleas to be put in a nursing home”.
Before we all rush to book one-way tickets to Dignitas when we are 80, it is important to remember that many older people have no social care needs. I asked everyone interviewed for this piece what they were doing, knowing what they did about old age, to prepare for it. The advice went something like this: make a will, make a living will, put in place power of attorney, have a pension, avoid being overweight, don’t smoke, drink moderately, stay active, think about your needs in old age before you get there and, if necessary, downsize and move to somewhere more suitable, don’t stick your head in the sand about old age, have a social network, stay mentally active, keep out of hospital if you can (a geriatrician told me that 10 days in hospital is equivalent to 10 years of muscle wasting in elderly people), work for as long as you can, and find what you enjoy and do it. That is as much as we have control over. Except, knowing all this, we may also want to start voting for a political party that invests in elder care. You know, just in case.
Don"t stick your head in the sand – how to prepare for old age
