Not Dead Yet: A Manifesto for Old Age. Julia Neuberger
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assess ageing well. In one study, fewer than a fifth of older people can be demonstrated to be ageing well if these criteria are used.14 Yet, if you ask them to assess themselves, around half of them say that they are, in fact, ageing very well, thank you.
Some have argued that it is easier to talk about disability-free life than about healthy life expectancy, and Sir John Grimley Evans was at pains to persuade the Lords select committee to take this different view, because ‘it is disability and its associated loss of autonomy that older people fear, and which in turn leads to dependency with its cost implications for the health and social services’.
The trouble is that there are so many ways of estimating healthy life expectancy. It can be based either on self-assessed general health or self-assessed limiting long-standing illness. When it is a question of mortality, there is no doubt: deaths are formally registered. But when it comes to illness or disability, you have to get the information using a subjective assessment by the individual. And when it comes to information about rates of ill-health in the population, this is derived from the British General Household Survey, a nationally representative interview survey of residents in private households, conducted over many years. Each year about 25,000 individuals are interviewed, of whom around 4,000 are aged 65 and over. But the General Household Survey only includes people living in private households. Yet residents in communal establishments, care homes, nursing homes and sheltered housing and the like represent a significant proportion of the elderly and of those in ill health. The healthy life expectancy figures, on the other hand, are adjusted to take into account the health of residents in health and care institutions.
They also ask very different sort of questions. For the survey, people are asked questions like ‘Do you have any long-standing illness, disability or infirmity?’ For the Census, people are asked questions like ‘Do you have any long-term illness, health problem or handicap which limits your daily activities or the work you can do (yes or no)’. For both the General Household Survey and the Census, people are asked: ‘Over the last 12 months would you say your health has on the whole been good, fairly good or not good?’
We do get a little closer to what individuals actually feel with these questions, rather than what the definitions say they are supposed to feel – but not very much. There are concerns about this kind of subjective test, and whether one person’s ‘fairly good’ is the same as someone else’s, but there is a big plus: research shows that ‘self-perceived health’ is actually a good predictor of health outcomes. That being the case, there is good reason, despite the scientists’ concern at the lack of objectivity, to trust the responses given by ordinary members of the public. They know how they feel and, apparently, their responses tie in neatly with their subsequent mortality, suggesting that the individuals concerned often had a clearer idea of what was going to kill them, and when, than the doctors did.
The difficulty comes in making comparisons with other countries, because they rely on different criteria. For example, the United States, Canada and Australia ask whether health is perceived as ‘excellent, very good, good, fair or poor’. In those countries, those who perceive their health to be ‘fair’ are in the fourth category rather than the third. It is generally accepted that the prevalence of disability in later life has fallen in the United States since the 1980s, but we don’t really know how this compares with this country. As far as the UK is concerned, ‘the informed view is that we simply do not know what is happening, but there is certainly no evidence that disability levels in later life are falling as in the USA,’ Sir John Grimley Evans told the Lords committee.
The benefits of using disability as a definition is that some international comparisons are possible. It is easier to define than ill health, but it is still far from being an absolute. Countries have different ways of defining what constitutes disability. Australia takes disability to be one or more of seventeen defined conditions. Japan takes disability to be confinement to bed. France includes as disabled all those in retirement homes. In the UK, disability is self-reported as a long-standing limitation on activities in any way.
So we still don’t know, despite all the different ways of defining it, whether a healthy lifespan is increasing faster or more slowly than the lifespan itself. Yet the fact remains that, on any measure, there are a number of years – about eight in the case of men and eleven in the case of women – during which older people regard themselves as not being in general good health, or as having a limiting long-standing illness or disability. Such evidence as there is suggests that this period of perceived ill health is not decreasing, and may well even be increasing.
Life satisfaction and well-being
But it is even more complicated than that. Two other American gerontologists, Christopher Callahan and Colleen McHorney, took part in an academic retreat in Indianapolis to discuss successful ageing, and found an even wider difference in how ‘experts’ define success.15 What emerged was that, for some scientists, health was the main – if not the only – definition of successful ageing. But for others it was something quite different and quite complex.
‘To a humanist, health may be less relevant than realizing one’s ambitions or helping a fellow human being to achieve his or her ambitions – neither necessarily requires health or longevity,’ they wrote. ‘If someone fulfilled the dreams of a nation, yet died of lung disease at aged 50 years, is that successful ageing?’
The narrow definitions of successful ageing may be inadequate, they said, but ‘we may not have the tools to embrace the broader, more complex perspective’. The problem is that scientists, with their biomechanical, biomedical models, are not very good at complexity, and any discussion with older people – humanist or not – suggests that the scientific model is simply inadequate.
Callahan and McHorney say they want a new science of complexity, which they believe is just beginning to influence research on successful ageing. But their emphasis on humility is welcome. Because this is not only about complexity – though that certainly is a part of it. It is also about talking to older people and finding out from them what they think successful ageing is. Because, as sure as eggs is eggs, it is very different from the scientific, biomedical model.
One key element that Ann Bowling and Paul Dieppe cite in their article, based on a huge literature review, is that ‘active engagement with life’ is a key component in successful ageing.16 ‘Active engagement’ is pretty difficult to define too, but there are some key elements to it. Top of the list are issues to do with autonomy and perceived autonomy. For many older people, the last thing they want to do, if they can possibly avoid it, is give up their home. It isn’t that they necessarily love their own home, though many do; it is losing their autonomy that people so despair of, moving into a care home and not being allowed to take quite basic decisions for themselves.
If you have dementia, then there are relatively few alternatives if your family is unable to give you the care you need, particularly as the dementia advances. But with most kinds of physical frailty, people are determined to keep their autonomy, and will do a great deal to make sure they do so even if they do, sadly, have to go into residential or nursing care. That is why the best of the care and nursing homes do all they can to promote a sense of autonomy and give people a range of choices.
Along with the autonomy question – making decisions about when to go to bed and when to get up, when to eat, whether to go out or not, what programmes to watch or listen to – there are also questions about social engagement. The academic literature includes discussions about social, community and leisure activities, about social networks, support, participation and activity. But if you ask many older people what matters, as Stephen Moss’s interviews made clear, it is love: love of a partner, even one maybe now dead, of children and grandchildren, siblings, friends and more distant family, an interest in the world. Often success means dealing with the world after the death of someone you love, as Katherine Whitehorn describes in her wonderful autobiography:
Being a widow is not helped