ši,' ™ «" * >» t.t.í r *'í y? if ^ h. f w'T* ^p-i^äS« ....... .. T , i^^^-fé^^-f ^*^<* f^^-fré" ' f"TÍtt^'H^'MMM^"^4i 9!ll!illlllll9l!!!iili MB 780415"354219' ^ 6 UNDERSTANDING IATER LIFE SERVICE USER INVOLVEMENT We want to begin with the experiences and perspectives of older people themselves. The rationale for doing this can be found within the wider movement for service user involvement. Service user involvement is a central theme in the planning and delivery of health and social care services and in the provision of social work education. Strong mandates for service user involvement emanate from social policy and legislation, the professional value base of social work and service user movements (Braye 2000). The key thrust of the service user involvement agenda is that service users are experts by virtue of their experience and that, for too long, this expertise has been ignored, marginalised or colonised by others (Beresford and Croft 2001; Beresford 2003). As far as older people are concerned, despite the prevalence in policy and practice of concepts such as empowerment and participation, and some engagement with the voices of older people themselves (see, for example, Barnes and Bennett 1998; Harris, John 2001), ageism remains widespread in institutions, professional practice and the experiences of older people (Nolan 2000). In research, too, there has been a tendency to pathologise and marginalise older people. Their perspectives and voices have frequendy been missing within academic and policy literature (Hey 1999), although there have been attempts at redressing their absence {see, for example, older people acting as research advisers inTozer and Thornton 1995). The importance of narrowing the gap between knowledge and experience has been increasingly recognised because 'the greater the distance between direct experience and its interpretation, then the more likely the resulting knowledge is to be inaccurate, unreliable and distorted' (Beresford 2003:22). Beresford puts forward a number of principles aimed at taking forward service user involvement, based on improving our understanding of other people's experience: • listening to what people say; • seeking to develop empathy with the perspectives and situations of others; • working to be open-minded and non-judgemental and challenging discrimination in ourselves and other people; • recognising what we do and don't 'know'; • valuing people's direct experience; • accepting the possibility that there are knowledges different from our own; • being prepared to accept something we may not fully understand instead of rejecting it without consideration; • being willing to move out to people, meet people on their own territory and see how things are for them; • acting upon knowledge that is based on direct experience - not just saying that we accept that this is how it is for someone else, but also being prepared to work, with them to change it (active knowledge); • involving people with direct experience {for example, service users) in the development and provision of professional education and training; • valuing the direct experience of service users in health and social care and encouraging the recruitment of service users as workers; • increasing access to research training for people with direct experience and supporting their involvement in research so that they can influence the process of knowledge production. (Beresford 2003: 55-6) | UNDERSTANDING LATER LIFE 7 These principles reflect widespread recognition of the different kinds of knowledge '. and understanding that service users can contribute and that must be incorporated, i alongside other sources and types of knowledge, at all levels in social work and social care services (Pawson et al. 2003). In planning the reform of social work education, the '; General Social Care Council set up a series of service user focus groups. The first theme identified by the groups was the need for social workers to understand the experiences and perspectives of service users. The second was the importance of social workers ? having effective skills in communicating and helping (Department of Health 2002a). We now turn to that first key theme in seeking to understand the experiences and perspectives of older people. (The second key theme - the skills required for working ;: effectively with older people - will be considered in Chapter 5.) OLDER PEOPLE'S EXPERIENCES AND PERCEPTIONS OF LATER LIFE ACTIVITY 1.1: WHAT IS IT LIKE TO BE 'AN OLDER PERSON'? Drawing on a range of perceptions and experiences of older people themselves, try to build up a picture of what it is like to be 'an older person' by carrying out one or more of the following: • Read first hand accounts written by older people, for example autobiographical material, magazine articles, poetry. (One example can be found in Box 1.1, page 8.) • Read qualitative research accounts that include quotations from older people about their perceptions and experiences. • Listen to television or radio interviews or documentaries that feature older people giving accounts of their lives. • Browse older people's websites (for example, www.hellsgeriatrics.co.uk). • Have informal talks with older friends, relatives or neighbours. • Talk to older people at a local residential or day centre or at a social club for older people. (You will need to explain the purpose and ensure that they are happy to talk to you.) [Remember: people you are defining as 'older people' may not see themselves in this way.) Make notes on some of the following: • How do older people define 'being old' ? Do they perceive themselves as old? Why/why not? • What is it like to be 'old'? What are some of the difficulties encountered? What strategies are used to deal with these difficulties? • What do older people enjoy about being older? What gives life meaning and value? 28 UNDERSTANDING LATER LIFE UNDERSTANDING LATER LIFE 29 Consensual versus conflictual view of society To what extent does a particular theoretical perspective assume a consensual view of society, accepting the status quo and assuming that society works in ways that are positive for its members as a whole? Or is a particular perspective based on the view that society contains conflicting interests and mechanisms through which some people gain and others lose? Deficit versus heroic models of ageing To what extent does a perspective portray later life as problematic and a time of illness, decline, passivity and dependency? Or, does it present a 'heroic model' of ageing, representing older people only in terms of activity, independence and retained 'youthfulness'? Social determinism versus individual agency/resistance To what extent does a perspective see older people's situations as determined by social, economic and political processes and to what extent does it allow for the capacity of older people to act within and in opposition to such processes? Homogeneity versus diversity To what extent does a perspective allow for differences between people or does it assume sameness, for example, making assumptions based on particular expectations about age, culture, gender, sexuality and so on? Stasis versus change/fluidity To what extent does a perspective assume that society and individuals are static and fixed or does it allow for change, development and fluidity? These dimensions begin to suggest some of the ways in which theory might be linked to practice. Having acknowledged key points about using theory to inform practice, and bearing in mind these dimensions for evaluating theoretical perspectives, we turn to some of the main theoretical perspectives for understanding later life and their implications for social work practice. THEORETICAL PERSPECTIVES ON LATER LIFE Bioloqica! theories Biological theories seek to understand the process of ageing in terms of biological and physiological changes that occur as people grow older. Biological theories include those that view ageing as a result of harmful environmental influences or internal defects and those that view it as an inevitable pre-programmed developmental deterioration (lfcngtson et al. 2005). Biological theories adopt a predominantly negative view of ageing as a time of loss of function and decline and offer 'macro' level explanations that fail to take account of individual differences and social, cultural and environmental influences. As Wilson argues The ageing body has characteristics that can be identified in any part of the world. This does not mean that all ageing bodies are alike or that they manifest the same changes at similar chronological ages, or that physiological 'old age' will be the same in different cultures. (Wilson 2000: 18} . Because of their status as 'scientific', biological theories have been very influential in shaping attitudes and beliefs about ageing. In particular, biological theories of ageing have contributed to negative cultural attitudes towards older people through the \ association of ageing with frailty and incapacity. As mentioned earlier, these negative t constructions also impact on the attitudes and self-perception of older people themselves. Signs of physical ageing become something to be feared or disguised, or I are accepted as part of an 'aged' identity but with negative implications for selfhood l (Biggs 1997). Another facet of biological understandings is that passive acceptance of i- the 'problems' of ageing is legitimated. Thus, professionals, carers and older people E: themselves may 'explain' problems such as memory loss, incontinence or declining mobility in terms of 'it's just his/her/my age', thereby excluding the possibility of I interventions that may treat or alleviate the difficulties. Furthermore, biological theories • of ageing do not in themselves take account of how individuals experience the process of ageing or find ways to adapt to physical changes. \ Erikson's life cycle I Erikson's psychological theory sees personality as developing across the lifespan and distinguishes eight stages within the life cycle (Erikson 1977). Each stage is seen as • characterised by a particular psychological conflict that has to be negotiated. Depending j> on how the conflict is resolved, a particular quality of ego functioning is developed in each stage. The stages are interrelated in that how conflicts are resolved at each developmental stage has implications for the subsequent stages {see Table 1.2 below). The conflict to be negotiated in later life is between integrity and despair. To achieve ego integrity, an individual reaches an acceptance of the life lived, a sense of 'keeping things together' and a feeling that the life lived has coherence. There is an acceptance of past losses and failures and a feeling that there are no 'loose ends' (Stuart-Hamilton 2000). In contrast, a state of despair results from regret about unresolved 30 UNDERSTANDING LATER UFE TABLE 1.2 Erikson's life cycle theory Life stage Conflict Ego functioning infancy Basic trust/mistrust Hope Childhood [If Autonomy/doubt Will' . Childhood \2\ .- JníHorive/doubt Purpose' Childhood |3) 1 n d u stry/i nferiori iy Competence Adolescence Ego identily/role confusion Fidelity Young adulthood Intímacy/roíe confusion Love Adulthood Gene rativity/stagnation Care. Old age Integrity/ despair Wisdom issues, feelings of discontinuity and a fear of death. Satisfactory resolution of the conflict between integrity and despair results in the ego quality of wisdom that may be passed on to other generations. Erikson's developmental theory connects later life with the rest of the life course and, unlike many previous psychological theories, acknowledged that learning and development are not confined to childhood but also feature in later life. However, a number of criticisms have been made of his life cycle model. First, it is seen as Eurocentric, accepting uncritically the cultural norms of society at the time (the USA in the 1950s). It takes as 'normal' and generalises from conventional expectations about life stage progression. Departure from these expectations is not seen as reflecting diversity in terms of behaviours that are different but of equal value, but rather as representing unresolved conflicts that have negative consequences for later development. Second, whilst Erikson's model is based on traditional expectations about progression through particular life stages, there is now enormous diversity in terms of the stages in the life course at which various life events or experiences occur. For example, people may have children, develop new relationships or return to education in later life. Erikson's model fixes aspects of development in particular stages rather than allowing for multiple developmental pathways, with various conflicts and challenges arising or resurfacing at different stages. Identity issues, for example, are not only encountered in adolescence but also may recur in later life through experiences such as unemployment and divorce. Erikson's theorising also remains essentially child-centred, with interest in the final two life stages being more concerned with the conditions for successfully raising children, namely passing on care and wisdom, than with understanding the subjective experiences of adulthood and later life (Biggs 1999). Disengagement theory This is another theory that was developed in the USA in the late 1950s and published in the early 1960s (Cumming and Henry 1961). As in Erikson's model, old age is understood in the context of an 'end of life' stage; whilst for Erikson this is about tying up loose ends, for Cumming and Henry it is about social withdrawal. Disengagement theory links the needs of ageing individuals with the needs of the social system, seeing the two as compatible. Older people are seen as disengaging from social roles and UNDERSTANDING LATER LIFE 31 ■ -[ationships in a process that is 'natural' and beneficial for them, releasing them from social expectations, and this process is regarded as of equal value for society, freeing up opportunities for younger people: Ageing is an inevitable mutual withdrawal or disengagement resulting in decreased interaction between the ageing person and others in the social system he {sic) belongs to. The process may be initiated by the individual : or by others in the situation . . . When the ageing process is complete the equilibrium which existed in middle life between the individual and his (sic) society has given way to a new equilibrium characterised by a greater distance and an altered type of relationship. (Cumming and Henry 1961:14) Thus disengagement is presented as an inevitable, central and universal aspect of dieageing process, with references to 'mutual withdrawal' and 'equilibrium' conveying a consensual rather than conflictual view of society. This theory has been subject to substantial criticism on a number of counts. First, it conveys an uncritically negative view of old age as a time of stagnation and withdrawal. Second, the theory is contradicted by research findings that reveal high levels of activity and engagement amongst many older people. While there may be some loss of social roles and activities, new roles and activities can take their place, f lere can be a process of reorientation or accommodation, instead of disengagement ■(Brandstadter and Greve 1994; Roberts and Chapman 2001). Rather than disengagement being inevitable, cross-cultural studies show that in many developing countries older people retain a very active role in their communities (Wilson 2000). -Third, it is assumed that disengagement is a positive choice for older people and this isicontradicted by the evidence. Gabriel and Bowling's (2004) research, referred to earlier, shows that being able to engage in hobbies and activities is an important dimension of quality of life, as defined by older people. Rather than disengagement : being a positive choice, social, economic and political processes mean that in many cases older people have no option but to disengage (Walker 1981). There is evidence to suggest that those who do choose to disengage in later life are those inclined by personality to more socially isolated lifestyles (Maddox 1970). Fourth, disengagement theory suggests that in later life the needs and wishes of older people take a different turn and are distinct from their expectations and requirements earlier in the life course. Again, this is not supported by research evidence (Coleman, P. et al. 1998). Finally, the theory can be criticised for its negative implications for policy and practice. Through portraying disengagement as a beneficial and inevitable process, the marginalisation ■of older people, for example through retirement policies, segregated accommodation and 'closed off forms of residential care, are justified. However, on a more positive note, it has been argued that while there has been little support for disengagement theory itself, it;has been of value in stimulating debate and theorising that offer alternative perspectives (Estes et al. 2003). 32 UNDERSTANDING LATER LIFE UNDERSTANDING LATER LIFE 33 Activity theory Although activity theory predated disengagement theory, it was developed further in efforts to repudiate disengagement theory (Katz 2000). Activity theory is based on the notion that continued involvement in social roles, relationships and activities can enhance well-being in later life (Havighurst and Albrecht 1953). The dimensions important for quality of later life are seen as the same as those for earlier in the life course, in contrast to disengagement theory, where later life is seen as a distinct phase, with different requirements. Both theories are, however, based on a consensual view of society. In activity theory, it is assumed that society's need for active and hard-working citizens is matched by the needs and wishes of older people to remain active. Whereas there is limited empirical support for disengagement theory, activity theory is consistent with research evidence that suggests that older people do strive to maintain personal interests, activities and relationships (Langan et al. 1996; Bowling et al. 1997). Not only is this what many older people want, there is also evidence that social activity plays an important role in sustaining their well-being (Kendig et al. 2000; Fernandez-Ballesteros et al. 2001). For example, a research study conducted as part of the Economic and Social Research Council's Growing Older programme identifies keeping busy as an important means of coping for older people who are widowed (Bennett et al. 2004). Whereas disengagement theory legitimates not responding or responding negatively to difficulties in retaining activities, roles and relationships, activity theory can promote positive intervention, including with older people traditionally seen as incapable of participating in social activity. In work with people with dementia, for example, occupation and play are seen as important dimensions for retaining person-hood (Kitwood 1997). A review of research on rehabilitation and dementia notes that activities can improve communication, mental and emotional well-being, if activities are selected and adapted to accommodate someone's level of cognitive impairment (Mountain 2005). However, activity theory does have potential pitfalls: 'The image of hordes of social workers forcing older people to mix with others "for their own good", with compulsory whist drives and so forth, is not a pleasant one' (Stuart-Hamilton 2000:160). In other words, older people want and benefit from continued engagement not in any activity, but in social activities that are personally meaningful and rewarding to them. The whole notion of 'activity' is more complex than its presentation in activity theory. We need to allow for the diversity of meanings that activity may have for older people; for example, older people may interpret it to include activities such as taking naps, watching television, gambling and daydreaming (Katz 2000). Both disengagement and activity theories are prescriptive in that they are putting forward a view about how older people should behave (Victor 2005). Establishing a direct causal relationship between activity (or disengagement) and older people's well-being is also problematic. Indeed, one study suggests it is the social relationships as an intrinsic part of most activities that are the significant factor in promoting well-being, rather than activity itself (Litwin and Shiovitz-Ezra 2006). However, both disengagement and activity theory, though seemingly diametrically opposed, may have some relevance for understanding the situations and views of older people: There are discourses that see old age as a time of well-earned rest (these are usually men's discourses) and there are discourses on the importance of keeping mind and body active. In the same way older people in many cultures think that a dignified disengagement from mid-life activities is appropriate in advanced old age, even though they also think that they should keep in touch with the rest of society as far as diey possibly can. Theories may conflict logically but they often make sense to individual elders as representations of different aspects of their lives. (Wilson 2000: 11) ACTIVITY 1.8: USING THEORIES TO MAKE SENSE OF OLDER PEOPLE'S EXPERIENCES Look back at your notes from Activity 1.1, the extract in Box 1.1 and the research findings on older people's experiences and perspectives presented earlier in the chapter. What evidence is there that supports either disengagement or activity theories of ageing? Continuity theory Continuity theory asserts that older people manage changes and choices by seeking to preserve both internal continuity, that is, continuity of ideas, preferences, skills, etc., and external continuity, that is, continuity of their physical and social environment (Atchiey 1989). Whilst continuity theory has been criticised by those who argue that later life is characterised by constant change and fluidity, Atchiey argues that continuity does not necessarily mean that things remain exactly the same but rather that change is negotiated within an overall framework of continuity that connects the individual with her/his past life. This is supported by Coleman, P. et al.'s (1998) longitudinal research, which found continuity in the life themes of people over the age of 80, with family ; relationships being the themes' main sources. Research has also demonstrated the importance to older people of maintaining habits and routines (Johnson, C. and Barer 1997; Sidenvall et al. 2001) and the significance of continuity of the physical environment of home and locality (Phillipson et al. 2001). However, while there is empirical : support for some aspects of continuity theory, it tends to attribute problems encountered to individual deficits rather than social factors. For example, if people cannot meet their own needs because they are disabled or poor, Atchiey sees this as 'pathological ageing'. Similarly, he sees continuity as maladaptive when someone lacks the physical or mental capacities that are necessary to retain continuity; he cites the example of an older person who insists on living independently when s/he lacks self-care abilities. The assumption is that it is the functioning of individuals that is pathological or maladaptive, rather than that environmental barriers are preventing older people from realising their aspirations. 34 UNDERSTANDING LATER LIFE Life course theory A life course approach to ageing draws attention to the connections between an individual's past life, her/his life as currently lived and her/his aspirations for the future (Arber and Evandrou 1993). The emphasis is not so much on preserving continuity as a way of managing the ageing process, but rather on understanding experiences of ageing within the context of the life course as a whole. This perspective is based on the premise that experiences of ageing can only be understood in the context of the whole life course since 'the life lived gives meaning to old age' (Ruth and Oberg 1996: 186). Life course theories do not represent the life course as a series of fixed stages but as characterised by changing and diverse processes, 'a way of envisaging the passage of a lifetime less as the mechanical turning of a wheel and more as the unpredictable flow of a river' (Hockey and James 2003: 5). In terms of the implications of this perspective, it highlights the significance of understanding an older person's past life in order to understand their current needs and plan appropriate service provision. While there is a danger of insufficient attention being given to the significance of social, economic and political factors in shaping life experiences, it is possible to adopt a life course perspective and take account of ways in which a life course has been moulded by ; structural factors. Structured dependency theory The main emphasis of structured dependency, or political economy, theories is that social and economic conditions create conditions of dependency in older people. The focus is shifted from biological/individual to social/structural determinants of ageing: Political economy has challenged the idea of older people being a homogeneous group unaffected by the dominant structures and ideologies within society. Instead, the focus is on understanding the relationship between ageing and economic life, the differential experience of ageing according to social class, gender and ethnicity, and the role played by social policy in contributing to the dependent status of older people. (Phillipson 1998: 18) Attention is drawn to compulsory retirement policies that exclude older people from the labour market, pensions policies that relegate older people to lives of poverty and, when they can no longer survive these conditions, to institutional care that segregates and isolates them, creating further dependency (Townsend 1981; Walker 1981). A criticism of structured dependency theories is that, at least in earlier versions, the emphasis placed on the significance of employment and pensions policies was more relevant to the situations of older men than older women. Structured dependency theories have also been criticised for being too deterministic and not allowing enough scope for the individual and collective agency of older people in challenging and resisting oppressive policies and conditions. For example, some older people take an active role in saving and planning for their future to avoid reliance on a state pension (Roberts and Chapman 2001). Also, retirement and residential care may be positive choices for some older people, rather than outcomes foisted upon them. In other words, it is important UNDERSTANDING LATER LIFE 35 to see older people as having the potential to be active agents, rather than simply seeing them as passive victims. Linked with this, it is also argued that structured dependency [fieories pay insufficient attention to how individuals interpret and give meaning to their situations. For example, there is no direct correlation between objective and subjective assessments of quality of life {George and Bearon 1980; Nolan 2000; Bond and Corner 2004). Individuals in adverse social conditions may evaluate their lives arid situations positively and vice versa. For example, 'old older people' have been noted to reconstruct their situations in order to maintain a positive outlook (Johnson, C. and Barer 1997). It is not enough, therefore, to adopt a structural model to understand the experience of ageing; individual and subjective factors must also be included. Identity management theory These theoretical perspectives are based on a postmodern understanding of society is complex, rapidly changing and allowing multiple opportunities for individuals to jonstruct and reconstruct identities of their choosing through consumerism. Identity is viewed as fluid, rather than fixed, and individuals are seen as exercising agency in responding to changing social situations and conditions by making particular lifestyle choices (Gilleard 1996: 495). There is recognition that the body places restrictions on the ability of individuals to choose their identity; in later life, the self cannot entirely escape the constraints imposed by an ageing body. There are different views about the ■ nature of the tensions between self, body and social responses and about how these pensions are managed. One view is that a self perceived as youthful is trapped inside i an ageing body; society responds to the individual in terms of the visible aged body, : or 'mask of ageing', creating tension for the inner youthful self (Featherstone and Hepworth 1989). An alternative view is that in later life, the individual is forced to :. deny their experience of an ageing self and instead present a youthful facade, or -masquerade, because the social space is hostile to and rejects ageing (Biggs 1999). The -individual's degree of self-expression depends on their assessment of the particular -social situation: 'rather than being seen simply as a form of inauthenticity, masque should be valued as an adaptive response to inhospitable settings' (Biggs 1999: 172). These two interpretations of how identity is managed in later life suggest different social :: responses. While the 'mask of ageing' indicates the need to recognise the older person's -youthful inner self and help them to express this, 'masquerade' suggests the need to create social environments that are accepting and supportive of the ageing self. These understandings and interventions are not, of course, mutually exclusive. The focus on individual agency in these perspectives can underplay the significance of constraints on choice arising from structural factors, such as restricted access to resources and opportunities. However, in emphasising the fluidity and individuality of experiences of ageing, these theories allow for multiple layers of diversity. Identity management theories also make a valuable contribution in recognising the ways in ■ which the ageing body constrains individual subjectivity and triggers negative social. . responses. 36 UNDERSTANDING LATER LIFE UNDERSTANDING LATER LITE 37 ACTIVITY 1.9: BILL WATERS Bill Waters is white British and aged 83. He lives alone in a first floor council flat. He has a heart condition and arthritis in his knees. He walks around the flat holding on to the furniture and uses two sticks when he goes out. He can only walk very short distances and he is finding it increasingly hard to climb the stairs up to his flat. Bill's wife of 51 years, Annie, died eighteen months ago. They had a close companionable relationship, sharing lots of interests, and Bill misses her greatly. They used to enjoy ballroom dancing together and were both keen gardeners who used to enter competitions and often won prizes for their homegrown flowers and vegetables. Bill had to give up his allotment when he moved to the flat six months ago. Having worked for many years as a postman, he misses being in the open air. Bill's only son died in a motorbike accident when he was 25. Bill has one sister still alive but she has dementia and lives in a nursing home. He is not able to visit her often. There is no other close family, though Bill has one or two friends from the allotments who call to see him from time to time. Bill's GP is concerned that he is sinking into depression and starting to neglect himself. She has asked the social worker to see if s/he can get Bill to go to the local day centre a few days a week so that he can have a hot meal and some company. Bill has never had help from social services and prides himself on his independence. Although he has never been well-off, he says he has never owed anyone anything in his life and he does not intend to start asking for charity now. He says he does not have any problems and can manage just fine. He wants to carry on as he is until it is time for him to join Annie, and he hopes this won't be long in coming. How do different theories of ageing contribute to your understanding of this situation? OLDER PEOPLE AS THEORISTS We have outlined various 'academic' theories of ageing. However, it is important to recognise that older people have their own theories that they use to understand their behaviour and situation, and that of others: When we . . . allow the ordinary theoretical activity of the aged (sic) and others to become visible, a whole world of reasoning about the meaning of growing old, becoming frail and care-giving comes forth. We find that theory is not something exclusively engaged in by scientists. Rather, there seem to be two existing worlds of theory in human experience, one engaged by those who live the experiences under consideration, and one organized by those who make it their professional business systematically to examine experience. (Gubrium and Wallace 1990: 147) " This brings us back to the point made at the beginning of the chapter about the need 1 o engage with direct experience. Service user knowledge, or 'ordinary theorising', is a key source of knowledge that must underpin our attempts at generating informed, critically" reflective and sensitive theorising. In Activity 1.9, for example, it is important to eng'