11

THE QUALITY OF OUR EXISTENCE

Active and healthy ageing is the new creed in the developed world. But how can we achieve that, and how can we shape our new, longer lives? If we want to know what exactly ‘healthy’ means, we must look beyond the outdated definition from the WHO. Old people’s own perception of their state of health and the quality of their lives is extremely important. Research has shown that social contacts are crucial for their wellbeing, as well as an ability to adjust constantly to changed circumstances, including the decline in their physical and cognitive abilities. Older people who manage to do that are successful in their old age. In fact, people in old age give their lives a rating similar to the one that young people do. This means that most older people are able to deal with setbacks, illness, and impairment.

In contrast to just a few years ago, when the ageing society was touted as a great problem waiting to happen, the political reports, conferences, and research programmes of today have titles such as ‘Long May We Live’, ‘Growing Old Successfully’, and ‘Healthy Ageing’. The ‘problem’ of the ageing population has not been solved, but these new headings suggest determination and vision, while politicians, administrators, and policymakers continue to try to hold back the tide like King Canute.

What is going on? Now that almost everyone in developed countries will enter retirement (at some time), and the life expectancy for those of pensionable age and above is increasing rapidly, the old-age dependency ratio is rising as inexorably as the tide. Society can no longer ignore the fact that more and more people are living longer and longer. Our society needs to be restructured, but the necessary changes are routinely postponed. Until recently, such a restructuring of society was not really thought necessary because we could still easily afford to pay for so many people’s retirement. The new economic reality since 2008 has completely changed that, however, and has made lasting change urgently necessary. The increasing number of older people, and the increased need for care this entails, require a completely new way of using public and private funds.

To lend strength to this ‘new way of thinking’, opinion formers no longer talk about ‘problems’, but prefer to refer to ‘challenges’ and ‘opportunities’, avoiding any negative labels for old people or old age whenever possible. The European Commission advocates strongly for a serious consideration of demographic change, and, in line with this new image, the new buzzword is ‘healthy ageing’. Almost every country in the world can expect to see an increase in the average age of its inhabitants as life expectancy rises. But average age is also highly dependent on the structure of a country’s population: the distribution between younger and older people. And the distribution is in turn dependent on (the fall in) the number of births and the balance between the number of people who migrate into and out of the country. Of all the continents, Europe has the highest average age, and of the major countries, Japan, Germany, and Italy top the list.

By no means are all citizens convinced that the ageing society offers ‘only opportunities’. More and more people are increasingly irked by the positive tone of this politically charged debate. They experience with their own bodies and minds that the ageing process certainly does take its toll, or they see it in their partners and friends. They feel anxious, or even depressed, at the thought of having to live to extreme old age. The simple reason is that negative reports about ageing eclipse the positive sides to getting older. Our parents and grandparents accomplished a formidable feat over the past one hundred years in learning how to live healthily for longer and longer. Our challenge is to learn how we can give meaningful form to that longer life. This is why we should speak much more often about how we can turn life in old age into something beautiful. And why should we not lend an ear to older people themselves, to use their experience as a source of inspiration?

WHAT IS HEALTHY?

What opinion leaders and policymakers mean when they speak of ‘healthy ageing’ is not the same as what doctors and medical researchers mean by the concept. And ordinary people have yet another idea again about what it means to grow old healthily. In short, there are many ways of defining the word ‘health’. One interpretation is that it is a benchmark for the state of a person’s body and mind. According to this, ‘healthy ageing’ is the best possible state of health attainable at a given age. In 1948, the WHO defined health as a state of complete physical, mental, and social wellbeing, and not merely the absence of disease or infirmity. The beauty of this broad definition is that it indicates that there is more to health than not being sick or impaired. This was a revolutionary idea in the period immediately following the Second World War. You are only healthy if you feel good about yourself, and if the ageing process has not yet caused impairment to set in. Broadly, this describes those people who look good for their age. They are the elite few who have inherited a great capacity for repair from their parents, or who have lived healthy lives, or who have simply been lucky. They are the ones we think of when we hear the popular expression, ‘Everyone wants to grow older, but nobody wants to be old.’ This kind of success is reserved for the very few.

Advocates of the ‘healthy ageing’ doctrine take a very literal view of the pursuit of health. Since this means preventing sickness and impairment into very old age, ‘healthy ageing’ is a futile and depressing mission for the average older person. After all, the vast majority of them are affected by one or more chronic illnesses, making it impossible to fulfil the demands of healthiness. What at first appears to be a nice, positive phase — ‘healthy ageing’ — turns out, on closer consideration, to be nonsensical. ‘Healthy ageing’ is an impossibility, and the phrase gives people the wrong idea. We can, of course, intervene in the ageing process to slow it down, but that does not prevent damage. It postpones it to a later time in life, enabling us to remain healthy for longer.

Many people who are old don’t feel it, and that is the second interpretation of ‘healthy ageing’. When you ask them about being old, some react with shock and horror. They certainly wouldn’t describe themselves as old or unhealthy, even in advanced old age, and are quick to point to the state of their neighbour, for example: ‘Go and ask her. She’s old. She can’t walk anymore!’ Adaptation to the ageing process is central to this second perspective. As we saw in Chapter 10, there can be a great divergence between illness, impairment, and subjective health. Two-thirds of older people in the Netherlands rate their own health as ‘good to very good’, even the oldest of them. Fewer than 10 per cent feel their own health is ‘poor or very poor’. This is remarkable, since most older people are registered at their doctor’s practices as suffering from various ailments and impairments. So subjective health may be a more important criterion than those in the WHO definition.

For outsiders, including doctors, sickness means something other than it does to the sick or disabled themselves. Their subjective health is much closer to a state of ‘wellbeing’ or ‘quality of life’ than healthy people might predict. This is what researchers call the ‘disability paradox’: people feel good, although they are sick or disabled, according to their doctor. Many (young) people believe that their life would be over if they had to spend the rest of it in a wheelchair. But that is not the case. Every year, many people are confined to a wheelchair by accidents and illness. This is followed by a period of anger, despair, denial, and depression, but eventually almost all wheelchair users manage to build a new life for themselves. Very few take their own lives. Human beings have a great capacity for adapting to new circumstances, even when their bodies or minds let them down.

The fact that most people with an illness or impairment do not feel sick or disabled, coupled with the fact that they are able to accommodate themselves to a new situation, means that a completely different way exists of looking at the ageing process. According to the second perspective, it is possible to maintain ‘healthy ageing’ by continuously adapting to new circumstances, including physical and cognitive deterioration, and so avoid the subjective feeling of being old. People should make up their own minds, rather than paying attention to the ‘benchmark’ that people around them — doctors and medical researchers — may want to judge them by. Rather than going into denial about loss of functionality, this individual attitude is based on possessing the resilience, motivation, and energy to compensate for a deteriorating body and mind. The ageing process then ceases to be a many-headed monster that must be defeated at all costs. Rather, it is a biological fact that we can adapt and adjust to.

THE LEIDEN 85-PLUS STUDY

Adjustment to old age is studied by many researchers who are interested in older people. The Gerontology and Geriatrics Department at the Leiden University Medical Centre invited every inhabitant of the city of Leiden on their 85th birthday to participate in the research project, and from 1997 to 2013 monitored those who agreed. Anyone could take part; no selection was made on the basis of health, functionality, or living situation. In order to better understand why older people continue to experience a high quality of life despite the illness and impairments they develop in old age, the participants were assessed according to the WHO definition of health. All the participants were visited at their homes in order to examine their level of physical, mental, and social functionality, and to assess their self-perceived level of wellbeing. This was accompanied by in-depth interviews: open, unstructured conversations to take stock of their ideas and motivations, and the factors contributing to their failure or success, as seen by the older people themselves. Data was collected in this way from 599 participants. Twice as many women as men took part, because more than half of the participants had already lost their spouse. More than 80 per cent of the 85-year-olds lived in their own home; the rest lived in institutions or assisted housing. Only a minority had studied at university level, which is typical of the time when this generation grew up. In a nutshell, these 85-year-olds in Leiden were a cross-section of the very oldest portion of the Dutch population.

Poor physical functionality was reported by 20 per cent of the participants; they were dependent on others for help with one or more of their daily activities — mainly getting dressed, undressed, and washed. Most of the older people reported only minor problems in daily life: they lived independently at home, but required help with housework, for example.

Most participants considered health to be the retention of a number of basic abilities, such as sight, hearing, and mobility, and the absence of life-threatening illnesses, such as cancer. Adjusting to the physical changes they experienced in old age, for example by taking things more slowly, was seen as natural and obvious. Acceptance of functional impairment was the way to stay feeling positive. Those who had not yet developed illness or impairment considered themselves lucky, and did not see it as a personal success. Many undertook measures to influence their functionality in daily life positively. As a precaution, they sought housing close to their children, displayed risk-avoidance behaviours (such as giving up cycling for fear of breaking a hip), or attempted to keep in good physical shape by doing gymnastic exercises or using an exercise bike. They saw an optimum physical functionality as a hypothetical ideal, since chronic illness and impairments were accepted as common at their age.

One of the participants who lived independently put it this way: ‘I may be disabled, but I feel healthy.’ He had been in a wheelchair since suffering a stroke 24 years earlier. His entire house was full of practical aids. It took him the whole morning to get up and make his bed, but he was proud of his ability to do this without outside help. He, too, showed that acceptance and adaptation were essential for his feeling of wellbeing: ‘Yes, I’m dependent on others for some things in my life, and nobody can change that, but I intend to try to stay independent in other aspects of my life for as long as I can.’

All subjects were given a memory test. Around 20 per cent showed probable signs of dementia. Some already had such a diagnosis; others had never been examined for dementia. Three out of every five participants reported no serious problems with cognitive functions. Most participants were afraid of memory loss — ‘Have I got dementia?’ — because they feared losing their personality. Good mental functions were held in high regard, and some subjects invested in maintaining them by doing memory-training exercises. Some felt sad and dejected at the loss of their partner. An additional 20 per cent of the participants reported in the questionnaire that they suffered from feelings of depression. This was clearly connected to problems with social interaction. When asked about loneliness, 16 per cent reported feeling isolated.

One particular participant reported feeling ‘muzzled’. The woman in question was a widow, and had outlived four of her six children. Whenever she was unable to sleep at night, she would talk to their portraits in the living room. She was restricted in her mobility, was in constant pain, and spent most of the time at home in her apartment. She was sad, not just because of the pain and the loss of her loved ones, but more because she had no opportunity to tell others what was going on inside her. She craved support and sympathy, but nobody wanted to listen to her complaints. Her son had told her, ‘Mother, stop telling sad stories all the time. I want you to be happy!’

All subjects were asked about their social lives. Roughly a third took part in one or two social activities per week, most commonly in the form of receiving visitors. At the other end of the spectrum, a third of the old people were active in various social networks. They had visitors very often or went out visiting themselves, spoke on the telephone with friends, played group games, or participated in clubs and church services. For most subjects, social functioning was crucial to their sense of wellbeing. Social contacts in old age were mainly the result of investments earlier in life — a precautionary measure to avoid loneliness. Personality and a feeling of reciprocation were other important factors. Even for those whose level of social activity was low, the interactions they did engage in were of great importance for their feelings of self-worth.

One married couple reported being successful in old age, although they were anxious about how they would deal with the death of the other partner. They helped each other with mobility, because both had difficulty walking. He had a special relationship with a son and grandson who were struggling with mental illness. Both often visited him for moral support. His wife had good relations with another grandchild. Together, they had numerous social contacts, and were fully integrated into their local community.

Some of the over-85s were comfortably off, lived in nice houses surrounded by gardens, and had many social contacts, but still felt unsuccessful in old age. One woman spoke of how she no longer had contact with her daughter because of a conflict between them. That gave her a continuous feeling of loss, which tainted any experience of success in life.

A sense of wellbeing was measured by asking subjects to rate their quality of life as they experienced it, from 1 to 10. The average rating was 8. There were some participants who rated their quality of life as 1, but there were also a large number who responded with a score of 10. For most of the old people, wellbeing was more or less equivalent to feeling successful in life. It was not just important to adapt, but also to count your blessings, such as social contacts, and to focus on gains rather than losses.

It was noticeable that feelings of wellbeing were sometimes strongly associated with experiences earlier in life, or an anticipation of life after death. For example, an 85-year-old widower who had been married for 62 years said, ‘Thank God I won’t have to wait long until I see my wife again!’ Despite his bereavement, having to move house and the turmoil associated with that, and increasing health problems, his sense of wellbeing remained great. He was intensely grateful for the years of happiness he had been able to share with his wife, and was looking forward to continuing them after his death.

One 85-year-old widow contrasted her positive present situation with a traumatic period in her youth. Her childhood had been dominated by feelings of fear and impotence, due to an incestuous relationship with her father. That dreadful time was followed by a happy marriage, which she looked back on with great satisfaction. Throughout her entire life, she had invested in social contacts with family and friends. Now, in old age, she enjoyed the affection of her children and grandchildren, and regarded herself as a happy person. Her present feeling of wellbeing was closely linked to the happy time of her marriage, and that enabled her to overcome the traumatic memories of her childhood. The physical limitations she experienced in old age were of secondary importance.

If ‘successful ageing’ is defined as a state of optimum physical, mental, and social functionality, then only around 10 per cent of the over-85s in Leiden would appear to fulfil those criteria. Gender, marital status, income, and education level appeared to have almost no influence on this result. According to the WHO definition, therefore, only a small fraction of our 85-year-olds were ‘successful’, and that percentage was even smaller among old people living in care facilities. That is really not an attractive outlook. However, this outcome was no great surprise to us researchers, since we knew that a large number of older people suffered from a range of chronic complaints and impairments. But we were pleasantly surprised by the fact that half the participants rated their own level of wellbeing as ‘good to very good’. This is a case of the disability paradox, described earlier: when a person feels good, even though others tell them they are sick or impaired. The older people’s own positive view of sickness and health was even more evident in the in-depth interviews: 22 out of the 27 interviewees described themselves, whether with a partner or alone, as successful and satisfied with their lives.

Further research was specifically aimed at finding out why older people who were not successful according to the WHO definition nevertheless regarded themselves as successful. First of all, it was important to identify the difference between independence and living with impairments. Several participants with a disability reported being able to manage well for themselves. The fact that this sometimes involved great difficulty, or was only possible with paid help from others, was irrelevant to them. Other participants had become dependent on others in their daily lives, because of ingrained gender roles rather than physical or mental impairment. For example, widowed men were often ‘handicapped’ in running a household, due to sheer inexperience. And widowed women were not uncommonly ‘dependent’ because their late husbands ‘always sorted everything out for them’. Finally, their immediate living situation was important in their ability to manage in day-to-day life: were there steps to climb, was a lift available, were there shops in the neighbourhood? Thus, some people were made dependent by hindrances in their environment.

Remarkably, some participants with dementia felt fine and, with support and supervision, were only slightly hampered in their daily lives by their memory complaints. Many older people distinguished sharply between physical and mental capacities or impairments. Body and mind were seen as important, but only insofar as they were necessary for the ability to function at the desired social level. Physical and mental impairments were seen as an inevitable loss due to old age. The opposite problem was more common: when older people were in good physical and mental shape, but did not feel happy, due to conflicts in their environment. Older people saw contacts with friends and family as a result of their own merits, as the payback for earlier social investments as parents, relatives, friends, neighbours, or co-workers. The quality of those contacts was seen as more important than the quantity, just as a large number of contacts in the present could not make up for one missing contact from the past.

The WHO definition reflects the way that researchers, doctors, and policymakers see health, and what they as professionals believe to be relevant when examining health issues. As we have seen, their way of seeing things is often at odds with the view that older people themselves take. Older people do not disagree with the various matters that outsiders deem important, but they attach a different level of importance to those factors.

In the WHO definition, for example, it is assumed that the different domains of day-to-day functioning and wellbeing are equally important; but, in the view of older people, there is a hierarchy. For most older people, it is social contacts and a feeling of wellbeing that determine their quality of life. The presence or absence of physical or mental impairments is less important. This is in accordance with what older people expect of the ‘normal’ ageing process — it is why they stress the importance of the ability to adapt as the key to achieving the higher goal of wellbeing. In order to feel successful, you have to be able to deal with loss and impairment, and integrate them into your life. Older people continuously refer to their own personal history and the immediate surroundings they live in. Those who have adapted better to their circumstances feel more successful.

An objective valuation by outsiders of wellbeing or the quality and quantity of social contacts does not form a basis for describing people as successful or unsuccessful. All that counts is how people assess these things themselves.

A RATING FOR LIFE

As a concept, ‘quality of life’ is newer than the WHO’s 1948 definition of health. It was introduced by researchers as a way of contrasting people’s feeling of wellbeing with the limited concept of illness as used by doctors and researchers.

There are many aspects that contribute to the quality of someone’s life, and each of them should be included in any relevant questionnaire. However, this is where the inevitable problems begin. Which aspects need to be recorded, and how much weight should be attached to each of them? It is clear that old people put social relations first, but perhaps younger people attach more importance to other things, such as social standing, sex, or money. And it is different again for people living with illness. For example, questionnaires designed for patients with chronic lung disease must include a question about shortness of breath. Cancer patients must be asked about pain. These examples expose the real problem.

Doctors and researchers try as much as possible to put themselves in the place of the people they need to question, hoping that this will help them design good questionnaires to measure health, illness, and the quality of life. But the choices they make will always be the result of professional consideration, and not the choices of the interviewees themselves. Older people, younger people, and sick patients all find different things important in their lives. Some researchers therefore advocate letting people decide for themselves what aspects are important for their wellbeing. They differ not only between people, but also over the course of one person’s life. What was important to someone when they were young, single, and at the start of their professional career may not necessarily be important to them in old age, when they already have a partner and perhaps children, too.

If the different aspects of wellbeing can vary so much from person to person, and can also change over the years, it would seem almost impossible to measure quality of life adequately using questionnaires. How can we afford the correct weighting to the different dimensions, to come to one result, one numerical value? The answer is that we can’t, and so we should not even try. It makes more sense to take a different tack and ask the people in question directly about their quality of life, and request that they rate it numerically themselves. Each individual then determines what aspects are important for personal wellbeing, and delivers a well-considered assessment of them. If the rating is high, the researcher can then ask what aspects have contributed to this result, or what aspects are still deemed to be lacking. In fact, this is what we do automatically in our private or professional lives whenever we talk to our children, partner, parent, or patients. For example, a general practitioner or psychologist will start a conversation by saying, ‘How do you feel?’ If the answer is, ‘Not good,’ then the following question will be ‘What is the matter?’ or ‘What can I do to help you?’

Asking someone directly how they feel about their own state of wellbeing is so obvious, it seems strange that we do not do it more often. Perhaps we don’t want to hear the answer. Many of us are convinced when we are young or middle aged that the quality of life in old age is bad, without ever having actually asked any old people ourselves. Only too often do we say that all that matters is how you experience life yourself. How, then, can we claim to know how older people experience their existence?

Much research has been carried out in Europe into citizens’ — not just old people’s — sense of wellbeing. Usually, the question is something like: ‘How satisfied are you, all things considered, with the life you lead?’ The results are rather surprising. Quality of life receives the highest ratings in Denmark, Norway, and Switzerland, where people give it 8 points out of ten on average. It has long been known that the Danes are very happy people, although we do not know the exact reason for this. In the Netherlands, and in Australia, the average score is between 7 and 8; in the UK it is 7; and people in Italy give their lives a score of 6 on average. It is interesting to investigate the reasons for those national differences.

Ruut Veenhoven, the ‘Professor of Happiness’ from Rotterdam, has made a career of doing this. He has found that happiness bears only a limited relation to a country’s gross national income, although large investments are necessary to maintain a high quality of life for citizens. However, it is not the case that more economic investment directly translates into happier people. There is, instead, a positive link between a well-functioning public administration and the quality of life. This suggests that a well-functioning state, based on the rule of law, and access to services and social provisions, are significant contributing factors to people’s level of satisfaction with their lives.

In 2014, the UK’s Legatum Institute established a Commission on Wellbeing and Policy to advance the policy debate on social wellbeing. Their aim is to give policymakers a greater understanding of how data on wellbeing can be used to improve public policy and to advance prosperity. The underlying principle is that prosperity is a more capacious idea than can be expressed by a purely material measure such as Gross Domestic Product.

Very importantly, perceptions of people in the same country but of different ages almost never differ. In Italy, citizens express the same level of satisfaction with their lives whether they are young or old; and in the Netherlands, as mentioned above, the average score is almost 8, irrespective of age category. Eight is also the rating given on average by the participants in the Leiden 85-Plus Study. The only difference between age categories is that people’s sense of wellbeing is slightly lower when they are in their fifties. The fact that old people in the Netherlands rate their lives with a score of 8 means that most are able to cope with setbacks, illness, and impairment. The feeling of wellbeing increases slightly in extreme old age, perhaps because older people learn increasingly how to deal better with life.

The high rating does, however, go down in the last year before death, but, happily, that moment arrives ever later in our lives.