Abstract
This article focuses on the scientific study of quality of life in old age and summarises, on the one hand, what we know and, on the other, what further research is needed. It consists of three main parts, with an extended introduction charting the recent evolution of a European perspective on ageing. First of all, it emphasises the amorphous, multidimensional and complex nature of quality of life and the high level of inconsistency between scientists in their approach to this subject. Secondly, the article summarises the main areas of consensus about quality of life in old age—its dynamic multifaceted nature, the combination of life course and immediate influences, the similarities and differences in the factors determining quality of life between younger and older people, the most common associations with quality of life and the likely variations between groups, and the powerful role of subjective self-assessment. Thirdly, the main research priorities and gaps in knowledge are outlined, together with the key methodological issues which must be tackled if comparative, interdisciplinary research on quality of life is to develop further. The main sources for the article are two European Framework Programme projects—the one a small five-country comparison and the other a large multidimensional project which, among other things, has been developing recommendations for research on quality of life in old age and included an extensive literature review on this topic. The article also draws on the recently completed UK Growing Older Programme of research on extending quality of life.
Keywords: Quality of life, Research priorities, Successful ageing, Well-being, Comparative research
Introduction: the emergence of a European perspective on ageing
The main purpose of this article is to survey the current state of knowledge about the quality of life of older people in Europe. This would be a daunting task for a monograph and, in a brief article, it is simply not possible to do justice to the mountain of scientific research in Europe on quality of life in old age. There is no alternative, therefore, to the broad overview presented here. Also, until recently there were very few systematic comparative European analyses of ageing. Europe boasts a long and wide-ranging tradition of gerontological research which has been pioneering in many respects, and also some of the world’s leading researchers whose primary research focus, however, has been a national one. Thus, there has been very little by way of structured contacts between scientists—these have been interpersonal or by happenstance at scientific meetings. The absence of comparative studies is particularly surprising in view of the potential of the European Union (EU) as a ‘naturally occurring laboratory for the comparative study of social policies for ageing populations’ (Maddox 1992, p. 355). In addition, major national programmes such as Nestor in The Netherlands and Growing Older in the UK have not been used as extensively as they deserve to be by either researchers or policy makers in other EU countries. In other words, national programmes and their databases have not become resources for the whole of Europe.
This absence of a distinct European perspective on ageing has begun to be corrected over the last decade, with an increasing number of comparative studies. The main driving force has been the scientific communities’ recognition of the need for more cross-national research and the sharing of knowledge and expertise. Leading examples are the IAG European Congress of Gerontology and now, at long last, this European Journal of Ageing (EJA). It is important also to acknowledge the role of the EU in encouraging this trend. For example, there was the creation of the European Observatory on Ageing and Older People in 1991 (Walker et al. 1991, 1993) and the highlighting of ageing research in Key Action 6 under the Fifth Framework Programme (FP5, 1998–2002), although its absence from Framework Programme Six was undoubtedly a setback.
With support from the EU, two recent FP5 projects have focused specifically on quality of life in old age and have provided much of the material for this article. Firstly, EQUAL-AGE was a small accompanying measure designed to create a European perspective for the UK Growing Older Programme which, from 1999 to 2004, investigated the factors determining the quality of later life (http://www.shef.ac.uk/uni/projects/gop/index.htm). EQUAL-AGE involved state-of-the-art reviews of existing research in Germany, Italy, The Netherlands, Sweden and the UK (Walker 2005). Secondly, the FORUM project, 2002–2004, conducted a series of scientific workshops on three topics—quality of life, health and social care, and genetics, longevity and demography—aimed at identifying knowledge gaps and prioritising research from a European-wide perspective. The outcomes of the FORUM process command a high level of consensus among both scientists and key research end-user groups and will be summarised in the penultimate section of this article. Other important pan-European research with quality of life as the central focus has been carried out under FP5, notably the Ageing Well project, but the results are only just becoming available publicly (Ferring et al. 2003). Many other projects include references to quality of life outcomes, such as OASIS (Tesch-Römer et al. 2001; Lowenstein and Ogg 2003). Clearly, the Europeanisation of gerontological research is well underway across this continent, and the EJA is a major boost to that process, although there are current questions, beyond the scope of this article, about its priority at the EU level and, specifically, what role it might occupy in the Seventh Framework Programme.
The remainder of this article will summarise the current state of knowledge on quality of life in old age from a European perspective, focusing on determinants and measurement, and then report the outcomes of the FORUM project with regard to the need for further research.
Dimensions of measuring quality of life in old age
Quality of life is a rather amorphous, multi-layered and complex concept with a wide range of components—objective, subjective, macro-societal, micro-individual, positive and negative—which interact together (Lawton 1991; Tesch-Römer et al. 2001). It is a concept which is very difficult to pin down scientifically and, as we shall see, there are competing disciplinary paradigms. Three central limitations of quality of life are its apparent open-ended nature, its individualistic orientation and its lack of theoretical foundations (Walker and van der Maesen 2004). The widely acknowledged complexity of the concept has not inhibited scientific inquiry—as Fernández-Ballesteros (1998a) has shown, in the final third of the last century, there was a substantial increase in citations of quality of life across five different disciplinary databases. While the rate of growth was significant in the psychological and sociological fields, in the biomedical one, starting from a lower point, it was ‘exponential’ (for example, increasing from one in 1969 to 2,424 in 1995 in the ‘Medline’ database). This reflects the fact that in many countries recent discussions of quality of life have been dominated by health issues, and a sub-field, health-related quality of life (HRQoL), has been created which emphasises the longstanding pre-eminence of medicine in gerontology (Bowling 1997; Walker 2005).
Another key factor behind this growth in scientific inquiry is the concern among policy makers about the consequences of population ageing, particularly for spending on health and social care services, which has prompted a search for ways to enable older people to maintain their mobility and independence, and so avoid costly and dependency-enhancing institutional care. These policy concerns are not peculiar to Europe but are global (World Bank 1994), nor are they necessarily negative because new policy paradigms such as ‘a society for all ages’ and ‘active ageing’, both of which are prominent in the 2002 Madrid International Plan of Action on Ageing, offer the potential to create a new positive perspective on ageing and a major role for older people as active agents in their own quality of life. A significant part of the impetus for this positive approach comes from within Europe (Walker 2002).
Models of quality of life
Given the complexity of the concept and the existence of different disciplinary perspectives, it is not surprising that there is no agreement on how to define and measure quality of life, and no theory of quality of life in old age. Indeed, it is arguable whether a theory of quality of life is possible because, in practice, it operates as a meta-level construct which encompasses different dimensions of a person’s life. A theory would not only lend coherence and consistency but would also strengthen the potential of quality of life measures in the policy arena (Noll 2002). As part of the European FORUM project, Brown et al. (2004) prepared a taxonomy and systematic review of the English literature on the topic of quality of life. In this, Bowling (2004) distinguishes between macro- (societal, objective) and micro- (individual, subjective) definitions of quality of life. Among the former, she includes the roles of income, employment, housing, education, and other living and environmental circumstances; among the latter, she includes perceptions of overall quality of life, individuals’ experiences and values, and related proxy indicators such as well-being, happiness and life satisfaction. Bowling also notes that models of quality of life are extremely wide-ranging, including potentially everything from Maslow’s (1954) hierarchy of human needs to classic models based solely on psychological well-being, happiness, morale, life satisfaction (Andrews and Withey 1976; Larson 1978; Andrews 1986), social expectations (Calman 1984) or the individual’s unique perceptions (O’Boyle 1997; Brown et al. 2004, p. 4). She distinguishes eight different models of quality of life which may be applied, in slightly adapted form, to the gerontological literature:
Objective social indicators of standard of living, health and longevity, typically with reference to data on income, wealth, morbidity and mortality. Scandinavian countries have a long tradition of collecting such national data (Hornquist 1982; Andersson 2005). Recently, attempts have been made to develop a coherent set of European social indicators (Noll 2002; Walker and van der Maesen 2004) but, as yet, these have not been applied to subgroups of the population.
Satisfaction of human needs (Maslow 1954), usually measured by reference to the individual’s subjective satisfaction with the extent to which these have been met (Bigelow et al. 1991).
Subjective social indicators of life satisfaction and psychological well-being, morale, esteem, individual fulfilment and happiness, usually measured by the use of standardised, psychometric scales and tests (Bradburn 1969; Lawton 1983; Mayring 1987; Roos and Havens 1991; Suzman et al. 1992; Veenhoven 1999; Clarke et al. 2000).
Social capital in the form of personal resources, measured by indicators of social networks, support, participation in activities and community integration (Wenger 1989, 1996; Bowling 1994; Knipscheer et al. 1995).
Ecological and neighbourhood resources covering objective indicators such as levels of crime, quality of housing and services and access to transport, and subjective indicators such as satisfaction with residence, local amenities and transport, technological competence, and perceptions of neighbourliness and personal safety (Cooper et al. 1999; Kellaher et al. 2004; Scharf et al. 2004). Recently, this approach to quality of life has become a distinct sub-field of ecological or architectural gerontology, with German researchers playing a prominent role (Wahl and Mollenkopf 2003; Wahl et al. 2004; Weidekamp-Maicher and Reichert 2005).
Health and functioning, focusing on physical and mental capacity and incapacity (for example, activities of daily living and depression) and broader health status (Verbrugge 1995; Deeg et al. 2000; Beaumont and Kenealy 2004).
Psychological models of factors such as cognitive competence, autonomy, self-efficacy, control, adaptation and coping (Brandtstädter and Renner 1990; Filipp and Ferring 1998; Grundy and Bowling 1999).
Hermeneutic approaches emphasising the individual’s values, interpretations and perceptions, usually explored via qualitative or semi-structured quantitative techniques (WHOQOL Group 1993; O’Boyle 1997; Bowling and Windsor 2001; Gabriel and Bowling 2004a). This model, which is growing in its research applications, includes reference to the implicit theories which older people themselves hold about quality of life (Fernández-Ballesteros et al. 1996, 2001). Such implicit theories and definitions may be of significance in making cross-national comparisons by providing the basis for a universal understanding of quality of life in the European context (and will be revisited later).
A common feature of all of these models identified by Bowling (2004) is that concepts of quality of life have invariably been based on expert opinions, rather than those of older people themselves (or, more generally, those of any age group). This limitation has been recognised only recently in social gerontology but has already led to a rich vein of research (Farquahar 1995; Grundy and Bowling 1999; Gabriel and Bowling 2004a, 2004b). This does not mean, however, that quality of life can be regarded as a purely subjective matter, especially when it is being used in a policy context. The apparent paradox revealed by the positive subjective evaluations expressed by many older people living under objectively adverse conditions, such as poverty and poor housing conditions, is a longstanding observation in gerontology (Walker 1980, 1993). The processes of adjustment involved in this so-called ‘satisfaction paradox’ have been the focus of interest in recent research (Staudinger and Freund 1998), and this work emphasises the need to exercise caution in reporting subjective data on quality of life in old age. As Bowling (2004, p. 6) notes, there may be a significant age-cohort effect behind the paradox, as older people’s rating of their own quality of life is likely to reflect the lowered expectations of this generation, and they may therefore rate their lives as having better quality than a person in the next generation of older people would do in similar circumstance.
Empirical research is required to test whether or not the satisfaction paradox is a function of age-cohort but, nonetheless, the caution concerning subjective data on older people’s quality of life is particularly apposite in a comparative European context where expectations may differ markedly on the north/south and east/west axes (Polverini and Lamura 2005; Weidekamp-Maicher and Reichert 2005). For example, there are substantial variations in standards of living between older people in different European countries—in the ‘old’ EU 15 in 2001, the at-risk-of-poverty rate among those aged 65 and over varied from 4% in The Netherlands to over 30% in Greece, Ireland and Portugal (European Commission 2003).
A recent review of research on quality of life in old age in five European countries found a fairly widespread national expert consensus about the range of indicators which constitute the concept, particularly in the two countries with the most developed systems of social reporting, The Netherlands and Sweden, but with a dominance of objective measures (Walker 2005). The southern European representative, Italy, does not consistently distinguish older people’s quality of life from the general population, and frequently does not differentiate among the older age group. In all five countries, health-related quality of life is the most prevalent approach in gerontology. Also, while there is no consensus on precisely how quality of life should be measured, there is evidence of some cross-national trade in instruments, such as the adaptation of the Schedule for the Evaluation of Individual Quality of Life (SIEQOL) for use in The Netherlands (Peeters et al. 2005).
Understanding quality of life in old age
In the light of the wide spectrum of disciplines involved in research on quality of life in old age and their competing models, is it possible to draw any conclusions about how it is constituted? The answer is yes but, because of the lack of either a generally accepted definition or a way to measure it, such conclusions must be tentative. First of all, although there is no agreement on these two vital issues, few would dissent from the idea that quality of life should be regarded as a dynamic, multifaceted and complex concept which must reflect the interaction of objective, subjective, macro-, micro-, positive and negative influences. Not surprisingly, therefore, when attempts have been made to measure it, quality of life is usually operationalised pragmatically as a series of domains (Hughes 1990; Grundy and Bowling 1999).
Secondly, quality of life in old age is the outcome of the interactive combination of life course factors and immediate situational ones. For example, prior employment status and midlife caring roles affect access to resources and health in later life (Evandrou and Glaser 2004). Fernández-Ballesteros and her colleagues (Fernández-Ballesteros et al. 2001) combined both sets of factors in a theoretical model of life satisfaction. Recent research suggests that the influence of current factors such as network relationships may be greater than the life course ones—although, of course, the two are interrelated (Wiggins et al. 2004). What is missing, even from the interactive approaches, is a political economy dimension. Quality of life in old age is not only a matter of individual life courses and psychological resources but must include some reference to the individual’s scope for action; the various constraints and opportunities which are available in different societies and to different groups, for example, by reference to factors such as socio-economic security, social cohesion, social inclusion and social empowerment (Walker and van der Maesen 2004).
Thirdly, some of the factors which determine quality of life for older people are similar to those for other age groups, particularly with regard to comparisons between midlife and the third age. However, when it comes to comparisons between young people and older people, health and functional capacity achieve a much higher rating among the latter (Hughes 1990; Lawton 1991). This emphasises the significance of mobility as a prerequisite for an active and autonomous old age, as well as the role of environmental stimuli and demands and the potential, mediating role of technology in determining the possibilities for a life of quality (Wahl et al. 1999). In practice, with the main exception of specific scales covering physical functioning, quality of life in old age is often measured using scales developed for use with younger adults. This is clearly inappropriate when the heterogeneity of the older population is taken into account, and especially so with investigations among very frail or institutionalised older people. Older people’s perspectives and implicit theories are often excluded by the common recourse to predetermined measurement scales in quality of life research. This is reinforced by the tendency to seek the views of third parties when assessing quality of life among very frail and cognitively impaired people (Bond 1999). Communication is an essential starting point to involving older people and understanding their views, and recent research shows that this can be achieved successfully among even very frail older people with cognitive impairments (Tester et al. 2004).
Fourthly, the sources of quality of life in old age often differ between groups of older people. The most common empirical associations with quality of life and well-being in old age are good health and functional ability, a sense of personal adequacy or usefulness, social participation, intergenerational family relationships, the availability of friends and social support, and socio-economic status (including income, wealth and housing) (Lehr and Thomae 1987; Knipscheer et al. 1995; Mayer and Baltes 1996; Bengtson et al. 1996; Tesch-Romer et al. 2001; Gabriel and Bowling 2004a, 2004b). Still, different social groups have different priorities. For example, Nazroo et al. (2004) found that black and ethnic minority elders valued features of their local environment more highly than did their white counterparts. Differences of priority have been noted in Spain between older people living in the community and those in institutional care, with the former valuing social integration and the latter the quality of the environment (Fernández-Ballesteros 1998b). Other significant priorities for older people in institutional environments are control over their lives, the structure of the day, a sense of self, activities and relationships with staff and other residents (Tester et al. 2004). This emphasises the importance of the point made earlier about the need to communicate with frail older people in order to understand their perceptions of quality of life—although some recent research has begun to address this (Gerritsen et al. 2004), the quality of the lives of the very old is still a relatively neglected area of gerontology. Comparative European research also points to different priority orders among older people in different countries—for example, the greater emphasis on the family in the south compared to the north (Walker 1993; Polverini and Lamura 2005).
Fifthly, while there are common associations with quality of life and well-being, it is clear that subjective self-assessments of psychological well-being and health are more powerful than objective economic or socio-demographic factors in explaining variations in quality of life ratings (Bowling and Windsor 2001; Brown et al. 2004). Two sets of interrelated factors are critical here—on the one hand, it is not the circumstances per se which are crucial but rather the degree of choice or control exercised in them by an older person and, on the other hand, whether or not the person’s psychological resources, including personality and emotional stability, enable him or her to find compensatory strategies, a process labelled ‘selective optimisation with compensation’ (Baltes and Baltes 1990). There is some evidence that the ability to operationalise such strategies, for example, in response to ill health, disability or bereavement, is associated with higher levels of life satisfaction and quality of life (Freund and Baltes 1998). Feelings of independence, control and autonomy are essential for well-being in old age. Moreover, analyses of the Basle Interdisciplinary Study of Aging show that, compared to the young-old, among the very elderly psychological well-being is more strongly associated with a feeling of control over one’s life than with physical health and capacity (Perrig-Chiello 1999).
Quality of life and successful ageing
This brief review of some of the key factors determining quality of life in old age involves considerable overlap with the constituents of positive or successful ageing, these being the maintenance of independence, social participation, growth, control over one’s life, social role functioning, cognitive ability, adaptability, morale, well-being and life satisfaction. However, this does not mean that the concepts are the same. Clearly, quality of life has a frame of reference which is broader than ageing. Also, successful ageing has a built-in value orientation, and the bulk of the research which has been carried out in this field has focused on individual measures of life satisfaction, morale and other psychological characteristics. Indeed, the concept originated in the development of life satisfaction and morale scales in the US in the 1960s (Neugarten et al. 1961; Havighurst 1963). In contrast, quality of life is a broader concept evolving from a variety of disciplinary perspectives, mainly sociological, biomedical, psychological, economic and environmental. In the light of the narrower focus of research on successful ageing than on quality of life, perhaps it is not surprising that the extensive literature review conducted by Brown et al. (2004) for the FORUM project found that expert approaches to well-being and successful ageing are poorly correlated with older people’s own views on these concepts. This conclusion is supported by research contrasting the common ‘objective’ measures of quality of life with the views of older people expressed in qualitative interviews (von Faber et al. 2002) and from sentence completion (Westerhoff et al. 2003). In addition, the concept of successful ageing has been subject to a variety of criticisms such as its bias towards expert assessments (Brown et al. 2004) and, perhaps most importantly for the purposes of this article, its original embeddedness in a culture-specific American set of ideas about the importance of success and failure (Torres 1999).
Emerging paradigm in quality of life research
Although quality of life may be criticised for its amorphous nature, there is no doubt that it is a broad-based, multidisciplinary concept and one that is the focus of increasing interest among gerontologists. As noted previously, an important driver of this interest is the policy-making process. Several strands of recent research in this field may be emphasised. Most important of all, there is a discernible shift away from the application of health-related proxies for quality of life—functional capacity, health status, psychological well-being, social support related to incapacity, morale, dependence, coping with and adjustment to disability—without reference to the ways in which older people in general, or specific groups of older people or service users define their own quality of life or the value they place on the different components used by the ‘experts’. A wide range of studies have shown that, in practice, older people are remarkably consistent in the domains they identify as being important for the quality of their lives—family and other relationships and contact with others, emotional well-being, religion/spirituality, independence, social activities, finance and standard of living, their own health and the health of others (Brown et al. 2004).
The danger with the previous approach to assessing quality of life in old age, and one which has dominated both scientific and professional worlds, was that it tended to homogenise older people, rather than recognising diversity and differences based on, for example, age, gender, race and ethnicity, and disability. A key element in this homogenisation is the prevailing use of statistical techniques which focus on means and general coefficients of association, rather than on internal sample differentiation (see Singer and Ryff 2001 for a review of statistical methods addressing diversity). Also inherent in this paradigm was a conception of older age as a distinct phase of the life course, i.e. one which is detached from middle age and earlier phases (Gubrium and Lynott 1983; Bond 1999). It is not surprising, therefore, that this paradigm came to be associated with the idea of old age as being a problem, something which must be ‘adjusted’ to. In its place, interpretive approaches are gradually appearing which aim, among other things, to build on the implicit theories of quality of life held by older people themselves. In particular, two complementary approaches to assessing quality of life from the perspective of older people are, on the one hand, from life-span development psychology, attempts to understand subjective meanings of quality of life within the context of the person’s life course and, on the other, the operationalisation of quality of life as a multidimensional phenomenon reflecting lay perspectives (Grundy and Bowling 1999; Bowling et al. 2002). Combining the strengths of these two approaches operationally calls for both quantitative and qualitative research methods.
The recent research of Gabriel and Bowling (2004a, 2004b), under the UK Growing Older Programme, well illustrates this emerging scientific paradigm in which theoretical models are integrated with lay perspectives. This research involved comparisons of the results from a representative national survey of older people, based on a hierarchical multiple regression analysis of theoretically derived quality of life indicators (Bowling et al. 2002), with respondents’ answers to semi-structured survey questions on definitions of quality of life, and with in-depth interviews with a sub-sample of people from the same survey. The variables which explained most of the variance in quality of life ratings were social comparisons and expectations, personality and psychological characteristics (optimism, pessimism), health and functional status, personal social capital (social activities, contacts and support, loneliness) and external, neighbourhood social capital (perceived quality of neighbourhood facilities and safety). Socio-economic indicators appeared to contribute relatively little to the model (although their indirect influence is likely). The main themes which were categorised from responses to the open-ended question on the things which gave quality to life were, in order of magnitude, social relationships, social roles and social activities, activities undertaken alone, health, psychological well-being, home and neighbourhood, financial circumstances and independence. Poor health was mentioned most often as the thing which took quality away from respondents’ lives.
The in-depth interviews with a sub-sample of survey respondents led to a similar categorisation of the good things which gave quality to life—again in order of magnitude, social relationships, home and neighbourhood, psychological well-being, solo activities, health, social roles and activities with others, financial circumstances and independence. On the negative side, the main factors which took quality away from their lives were a poor home and neighbourhood, poor health and poor social relationships.
In order to obtain a rich understanding of the meaning of quality of life in old age, the results of these different perspectives were combined using thematic coding of the qualitative data which were compared with the quantitative data (Gabriel and Bowling 2004b, p. 678). This suggests that quality of life in old age depends on psychological characteristics, health and functioning, social activities, neighbourhood as well as perceived financial circumstances and independence, and is influenced by social comparisons and expectations. These main determinants of quality of life were also supported in representative research on ethic differences in quality of life in old age in the UK, albeit not in the same order (Nazroo et al. 2004).
At the European level, the Ageing Well project is an ambitious attempt to operationalise five key components of quality of life (physical health and functioning, mental efficacy, life activity, material security and social support) and to estimate their direct causal contribution to the outcome variable ageing well. Although the chosen domains were derived from previous research and there were no distinct lay inputs to the process, this project is likely to produce important comparative European data for research on quality of life in old age. The research was carried out in 2002 and 2003 in six European countries (Austria, Italy, Luxembourg, The Netherlands, Sweden and the UK) where representative national samples of people aged over 50 were interviewed (Ferring et al. 2003). These sorts of purpose-built data are essential to supplement the increasing amount of comparative European data generated by Eurostat based on general population surveys such as the European Household Panel Survey.
Future priorities for European research on quality of life
The final part of this article turns from a consideration of what we know to an outline of what more we need to know and do as a European research community. It draws on the recommendations to emerge from the series of meetings convened by the European FORUM project which started with a multidisciplinary scientific workshop on quality of life in old age in Heidelberg in September 2002, the results of which were fed into a meeting of the European Forum on Population Ageing Research in March 2003, along with those from parallel workshops on the topics of health and social care and genetics, longevity and demography. The outcomes were passed on to a user consultation meeting in June 2003 and then back to a second workshop on quality of life, in London, the following October. The endpoint of this iterative process was when the results of the quality of life and other workshops were fed into the second meeting of the European Forum in June 2004. Thus, the final recommendations were generated not only by meetings involving many of the leading European scientists working in this field but also by end-user groups and those responsible for the national funding of ageing research. A wide range of recommendations were made, including to national and European research policy makers, but here I will focus only on three sets concerning quality of life—research priorities and knowledge gaps, European and interdisciplinary collaboration, and methodological issues. (The full set of recommendations, including those covering the topics of health and social care and genetics, longevity and demography, and those intended for national and European research funders and policy makers, can be viewed on the FORUM website http://www.shef.ac.uk/ageingresearch). Again, it must be emphasised that these are not the personal views of the author but the results of a consensual iterative process, involving key scientists, end users and funders of research.
Research priorities and knowledge gaps
A clear message to emerge from the discussions about quality of life is that European comparative research is greatly inhibited by the wide variations in the type and quality of data available on this topic in different countries. There is an urgent need for comparable approaches and measures to be adopted, if the full potential of European research is to be realised. A second structural limitation is the very uneven nature of research capacity and competence across Europe, which results from wide variations in the levels of funding and other support for ageing research. Discussions of research priorities were focused on four broad areas—environmental resources, socio-demographic and economic resources, health resources, and personal resources, social participation and support networks.
It is important for ‘environment’ (at all levels) to be treated as a key component of quality of life in old age—a dynamic context which brings the space/place agenda to the heart of gerontological research. The main reason why person–environment transactions are so necessary to the discussion of quality of life in old age is that there is a gap in the descriptive data concerning the everyday lives of older people. These data would assist ageing research in general as well as being able to inform policy makers about the similarities and differences in the everyday lives of older people across Europe. The scientific discussion about the role of the environments of ageing envisaged a three-dimensional framework linking together individual factors (from health and personal ability to life story), psychological and social factors (security, loneliness, autonomy, attachment, diversity, cohort, ethnicity, culture, gender, material resources) and environmental factors (migration, transport, accommodation, technology, neighbourhood, the natural world). Within this framework, the urgent priorities for research in the environmental dimension include:
The need to understand the experience of interior and exterior space in later life across different European countries and regions (urban/rural, developed/less developed).
The need to balance knowledge about older people living in ‘special’ settings, such as residential and nursing homes, with research on those living in ‘ordinary’ ones.
New research on the experiences of older people with dementia living at home, which also calls for imaginative approaches to communication within this group.
The substantial knowledge gap about how older people with learning difficulties/intellectual disabilities are ageing in place also raises again the important issue of communication.
More research on the spatiality of ageing, the environments which are accessible or inaccessible for older people, and on the intergenerational dimension of integration/segregation within public and private spaces.
More evaluations of practical environmental interventions to provide knowledge on how to improve the lives of older people.
Three key priority issues were highlighted with regard to socio-demographic and economic resources. First, quality of life research needs to explore further the question of diversity. For example, there is a need to understand the causal factors behind inequalities between countries and social groups, including the extent to which some circumstances and experiences are universal and how the priority order of factors determining quality varies between different groups of older people. Given the changes in male and female life course trajectories, it is important to investigate issues such as gendered changes in working life, the experience of long-term and discontinuous employment, changes in pension policy, the transition to retirement and their impact on quality of life.
Second, it is important to focus research on the economic status of future cohorts of older people, and the relationship between ageing and income and other material resources. For example, new knowledge is required on how the income needs of older people change as they age, on their perceptions of income and how these change over time. Too little is known about wealth and inheritance, including the economic power of older people in society and within families, and how wealth is transmitted between generations. What is the impact of inherited wealth within families? What is the impact on potential demand for long-term care services? What is the impact on financial markets? The absence of reliable data on this topic means that new research is needed to collect comparative information on wealth and goods in kind at both the individual and household levels.
Third, further research is required on employment in later life and the transition to retirement. For example, what are the economic incentives to continue to work in later life? What is the relationship between work, age of exit from the labour market, pensions and inheritance? What inequalities exist among older people? Are there new ones or are the classic inequalities persistent? Is there polarisation or convergence within countries and between them?
In the field of health resources, two different sets of research priorities were identified. For one, there are those concerning research reviews in preparation for European collaboration. For example, reviews are needed of the existing conceptual and empirical research relating to the concept of quality of life, covering not only subjective quality of life but also all aspects relevant for individual agency (such as resources and competence). To prepare for comparative research, it is also necessary to review analyses of policy, health systems, societal structure and cultures. In addition to the need for preparatory reviews, there are five specific field research priorities:
The need to examine aspects of prevention, rehabilitation and disease management in health care systems, and their effects on health behaviour and quality of life.
Research on the quality of life of older people with chronic disease.
Inequalities in health and quality of life, related to structural factors such as income, gender, ethnicity and age.
Historical health trends within and between cohorts and generations—comparisons between the young-old who have become healthier over time and the old-old who have developed new forms of frailty such as dementia.
The relationships between migration and ethnicity and health and social care systems. On the one hand, there are increasing numbers of migrants in some countries, which necessitate research on ethnic and cultural variations in attitudes towards and use of services. On the other hand, migrants fulfil different roles in Europe’s health and social care systems—as in-house domestic carers in Italy and Greece and as employees in residential and nursing homes in Germany and the UK.
A large number of priorities were highlighted in the field of personal resources, social participation and support networks, a small selection of which are reported here:
Policy research and the role of welfare systems in shaping the standard of living and quality of life in old age.
Diversity, risk and marginality and, in particular, the experiences of minority ethnic groups and older migrants.
The interaction between the resources of older people and personal coping and adaptation to the risks and challenges associated with later life.
Life course trajectories, family change and intergenerational relationships, including new family forms and the risks of social exclusion and isolation.
Quality of life among particularly vulnerable groups of older people, such as the very old and frail, those with dementia and other intellectual disabilities, the study of which will require new models and concepts.
Objective living conditions, and how these are subjectively perceived and adapted to.
European and interdisciplinary collaboration
A continuous thread running through the whole FORUM process, beginning with scientists from a wide range of disciplines, was the strong support for both greater European comparative research and knowledge sharing and interdisciplinary research. Comparative research is necessary not only to share knowledge and good practice but also to provide a critical perspective on the portability of different models of practice. Comparisons are needed of quality of life in old age in different European countries, because the existing aggregate data provide only a superficial view, and such studies must relate quality of life to the national cultural and institutional context. Comparative research will also help to avoid ethnocentric value biases in defining ‘good life’. Scientists felt that the importance of comparative research was not always recognised by national research funders and, to demonstrate this, they suggested projects on specific policy issues common to several countries to establish good practice within different cultural contexts. With regard to interdisciplinary collaboration, scientists emphasised the importance of disciplinary identities but also stressed the need to integrate knowledge to produce broader models of quality of life. The essential point is that the nature of the collaboration should be determined by the specific research question and, therefore, a range of different sorts of interdisciplinary work may be envisaged. If such collaborations are to be successful, it was felt that one discipline should not be dominant. At the moment, there is a widely perceived lack of both research capacity in Europe in terms of funding for a new generation of scientists in this field, and of support to develop capacity for comparative and interdisciplinary research (although new research programmes on ageing in Finland and the UK are addressing this gap).
Methodological issues
Again, a large number of recommendations in this area were made initially by scientists and later endorsed and sometimes amended by research users and policy makers. Six of the main ones will be referred to here.
First of all, there is a need for further theoretical work on the models of quality of life and the instruments used to measure it. In particular, the implicit theories held by older people concerning the quality of their lives must be incorporated into a basic definition of quality of life. In other words, investigators should ensure that their models are grounded in lay perspectives, standards and norms, and not purely in theoretical constructions. There is a need for further research to identify the gaps in the most commonly used existing scales used to measure quality of life, in order to see how far lay perspectives can be incorporated (Brown et al. 2004). Thus, a model is required which captures individual agency and perspectives on what constitutes quality and well-being, with other relevant factors as preconditions.
Second, such theory development needs to be undertaken by various disciplines working in collaboration, so that the different factors shaping quality of life—from genetics to pensions—can be incorporated.
Third, there is a pressing need to harmonise data between countries. This may consist of both the post-harmonisation of existing data and pre-harmonisation aimed at developing comparable instruments.
Fourth, access to existing data and documentation must be improved, for example, by the establishment of a virtual quality of life database library on the web. This would also require database training for researchers new to the field.
Fifth, there is a need for a European longitudinal study on the dynamics of quality of life. Such research is required urgently to assess both cohort effects and the impact of changing values and expectations in quality of life. Most existing national longitudinal studies concern one historic cohort in which ageing-related changes in quality of life are studied (an exception is LASA in The Netherlands, which adds new cohorts at specific time intervals). Given generational and social changes, a cohort-sequential design is necessary to distinguish these from those associated with ageing.
Sixth, it is important to develop comparative methodologies. In view of the unique spread of nations and cultures in Europe, it is vital that definitions and methods are cross-cultural and dynamic. Thus, cross-national studies should include both standardised instruments plus additional culture-specific items. The lack of information on ethnic minority elders has been referred to above, and information about quality of life in Eastern Europe is emerging only slowly (Weidekamp-Maicher and Reichert 2005).
Conclusions
This article set out to survey the current state of European knowledge on quality of life in old age, and to report a recent concerted attempt to identify the remaining research gaps and priorities. Beyond quoting briefly the variation in income levels among older people in Europe, it has not been concerned with reporting comparative research data but rather with highlighting different approaches to the definition and measurement of the quality of later life and with summarising its components. This evaluation emphasised the difference between the theoretical models constructed primarily by scientists themselves and those grounded in the perspectives of older people. It is likely that these latter lay perspectives will play an important role in the design of comparable instruments (and perhaps even a European definition of quality of life in old age), not least because there is a remarkable level of consistency in the domains identified by older people across a wide variety of countries, welfare regimes and cultures.
The gerontological community is becoming increasingly Europeanised. Nonetheless, the most striking observation prompted by participation in European projects such as EQUAL-AGE and FORUM is how little research and conceptual thinking is shared among this community of scientists. There are many research gaps in one country which have been extensively researched in another. The gerontological research wheel is being reinvented constantly because of this lacuna. Language is a serious barrier to exchange but so is funding to create long-lasting networks. Also, the absence of a regular forum for scientific debate has been a problem but now this journal will provide exactly what is needed. I hope that it will succeed in bringing closer together the wide array of talented scientists studying ageing in Europe, and help to encourage the development of succeeding generations of researchers in this field.
Footnotes
This article was previously published with DOI s10433-005-0015-8, which was mistakenly created twice and has therefore been replaced by the current DOI.
I would like to thank very warmly the following for their help with this paper: Ann Bowling, Joe Cook, Rocio Fernández-Ballesteros, the EJA’s anonymous referees, and all of the participants in the FORUM project quality of life workshops.
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