Introduction

by Elspeth A. Stirling

Introduction

In what ways does Social Role Valorisation help us to understand the situation and the life experiences of older people in technologically dependent societies?

This question is important not only for the maturing individual but also for the maturing of communities, where 'maturing' means growing up not growing old. This is the first period in history when longevity is occurring 'en masse'. Previously, to live into the seventh and eighth decades was the experience of a small minority, but not the norm for the majority in a society. In the scale of human history it is still a new experience and, accordingly, it is timely to explore societies' responses. This paper applies social role valorisation principles to understanding the situation of older people in the so-called 'developed' world, which is actually the technologically dependent world.

With the growth of technology societies have focussed on the creation of 'the perfect individual' and on extending life ('eternal life'), thereby fuelling denial and defensive 'eugenic' measures transacted against older people. Wolfensberger (1987) has described the processes by which fear about death is typically enacted through unconscious social processes of control in societies, such as segregation of dying and frail people. Technology enables the creation of more means for sustaining this denial and distancing.

Smail (1984) has argued that the cultural phenomenon of "the cult of the machine" represents the ultimate objectification in our view of ourselves, obscures our seeing the features of our environment which actually need subjective attention and prevents us from getting to grips with the suffering and depletion in our communities that actually needs intervention. Smail's thesis is that we maintain an irrational belief in the viability of our mechanised way of life at our peril. The cost is that such mythology shapes our values and correspondingly shapes our interpretation of our experiences of the world, leaving us blind to the damage actually happening to our physical and social environments.

We all acknowledge, for example, that many of the fundamental deprivations and injuries suffered by our species could be greatly alleviated if we devoted to them the resources we devote to the refinement of our technological achievements, and we all know that the depletion of our natural resources and the pollution of our world on the scale we at present find necessary to maintain our mechanised way of life cannot be allowed to continue without disaster. (chapter 6, "The magic of the machine")

Relatively little has been taught or written on the creative application of the principles of SRV in the field of services for older people. Kitwood's (1997) concept of "malignant social psychology", however, is essentially a Social Role Valorisation analysis of the genesis and progress of dementia. His writing on person centred care has provided a vision to which many are now subscribing in the field of services for people with dementia, and also a challenge to the standard paradigm which sees people with dementia as 'damaged' in contrast with 'we' who are whole, competent and unimpaired (if kindly disposed towards those we provide care for). In the new paradigm of person-centred thinking the responsibility is on ourselves to learn how to be fully human in our relations with persons who are vulnerable with dementia.

Cheston and Bender (1999) have argued that one of the key psychological determinants of dementia is the loss of social role, and through their 'theory of mind in dementia' have demonstrated the major point that social relationships and the psychosocial environment are the pillars that support and sustain the person's identity; their loss or damage erodes the person's capacity to sustain their identity and may cause more damage than the initial neurological deterioration-- and will certainly make the person with neurological impairments more vulnerable.

A broader SRV analysis has been provided by Stirling (1996), looking across a range of the situations that make older persons vulnerable, and not only dementia - including being seen predominantly in terms of being close to death, a burden, sick, child-like, redundant, in decay, broken or interfering. This analysis takes into account not only the 'malignant social psychology' (the 'vicious circle' of SRV) but also the seven core themes of PASSING (Wolfensberger and Thomas, 1983) and the implications of SRV service principles for services for older people generally (Woods, 1996, chapter 20, "Social Role Valorization: Making a difference to the lives of older people?") The implication is that these processes are ignored at our peril-- that responsibility extends beyond those who are in face to face contact with older people in 'caring' roles and into the realms of all of us understanding ourselves and our vulnerabilities as individuals and as communities, and the process by which damage is transacted through the roles and relationships which are required of frail and disabled older people.

Our current situation

Older people are still dealt with in ways that would be unacceptable for other groups while so-called developed societies pursue unsustainable illusions such as 'the perfect body', and life as pain-free and death-free. Why?

Older people continue, for example, to be deposited in institutions created for them or left behind by other groups who have moved on to new forms of support, whilst this practice is deemed inappropriate and unacceptable for other groups in society. In contrast to the paradigm shift from mechanistic to person-centred that has happened elsewhere-- where SRV based planning has created new kinds of relationships, services and community opportunities-- there has been very little shift from old paradigm concepts and practice in relation to older disabled people. At the same time, and probably linked, is the reality that there has been very little presence of an advocacy movement or other social movement for change on behalf of older people, as compared to other groups in society.

So-called 'developed' societies (which really technologically dependent societies) pursue the unsustainable illusion of the perfect body, the idea of life as pain-free, and the magical thinking by which the technical 'elimination of disease' becomes the key to eternal life. It seems that, as they have become the norm in societies, longevity and technology have been subverted by consumerism into instruments for the pursuit of the ideal of ' perfect body' and the notion of the 'individual going on for ever' as the epitome of human life. Technology and energy are consumed unquestioningly and feverishly in the pursuit of these goals, rather than being harnessed to creating opportunities for and raising awareness about the value of the diversity of life, including valuing individuals and groups whose characteristics do not and will not ever 'fit' with these 'ideals'. To an aware person the notion of the individual 'going on for ever' sounds to be horrifying and stultifying, yet it is clung to by the consumer in a world keen to sell the goods and services which promise the illusion (Smail, 1987)

In the standard paradigm ageing is seen as breakdown or decay of the 'body as machine' (potentially perfect, and potentially fixable in perpetuity), and thereby ageing implies failure of the technical fix. In that context ageing is a threat to the both the illusory hope and the consumerism which depends on it. Technologically dependent societies have as a key feature the obsession with seeking security and comfort in the paradigm of the 'body as machine', and it is this magical thinking that enables the illusion of control, even to the point of control over life itself.

On a societal level, the illusion of eternal life and denial of death is sustained by concealment of older people away from mainstream life. The aged 'other' is a threatening reminder of the false nature of the beliefs, and by a logic manoeuvre must be deemed a 'failure', so that the illusion can continue to be sustained.

he following sections will examine who exactly are 'old people', the beliefs that exist historically about ageing, the 'old (or standard) paradigm' and the 'new paradigm' - and the difference the latter would make to the culture and the individual.

Who are 'Old People'?

Persons of a certain generational context

'Old People' in our current culture are persons of a certain generational context-- who were born into, and had their earlier life experiences in, cultures which held to different values from the present. These cultures were more likely to value:

  • Non-reliance on technology e.g. quality would be associated with personal craftsmanship and manual production
  • Collective effort on practical tasks e.g. to harvest a crop would require the whole community
  • Sharing practical wisdom and experience across the generations. Generations would be interdependent - the later generation on the earlier for learning, knowledge, skills and traditions e.g. how to grow food, prepare food, build and maintain homes and workplaces, make entertainment and recreation; and the earlier generation on the later for finding new ways of achieving important goals for the community
  • Intergenerational expectancies about the roles which the earlier and later generations would transact for each other e.g. caregiving, teaching, supporting, celebrating, guidance in the development of positive or 'higher' human qualities such as compassion, trust and humility.

In societies where the machine (the values of technology) and individualism dominate, there is a 'mismatch' with the culture. Such cultures offer only weak roles for the older members of society. The intergenerational sharing of practical wisdom is superceded by technical ready made 'solutions', experience devalued to the status of redundant or at worst intrusive on 'modern solutions', and reliance for personal support (emotional and practical) replaced by the 'professionalisation' of the lives of those old persons who need support.

How the nature of ageing and its problems have been defined?

It seems likely that, historically, a number of beliefs about the nature of ageing have influenced how older people are seen in society, and the present models may be muddled accordingly. Table One uses Wolfensberger's method of analysis of the ways in which beliefs about a certain group influence society's response, and consequently the service models which the society requires to be enacted in relation to the members of the groups.

Specifically, this table illustrates how beliefs about ageing have influenced:

  • societies' responses to the group called older people
  • the service models that are deemed appropriate by the society for that group.

The 'Old' Paradigm

The medical model is underpinned by the way of thinking that is classificatory, and clearly has the constructs of diagnosis and disposal at its heart. The medical model continues to predominate in relation to thinking about the needs of older people, and three important reasons can be seen for this:

  • In recent history, the 'body as machine' belief has developed particular appeal for technologically dominated societies. It leads to a view of ageing as the breakdown of the machine, and to a consequent technical response-- 'fixing' that which is seen as broken.
  • Proximity to death is threatening and intolerable to a society that values individual perfection, and hence institutions thrive which protect society against the reality of ageing. Institutional containment and socially engineered separation, therefore, still affect those perceived as close to death (older people) in ways which would not be acceptable for other groups in society (Wolfensberger, 1987).
  • Those perceived in these terms as the 'unfixables' carry society's projected fears about death, and thereby continue to have old patterns of social control (such as institutional containment and socially engineered separation) transacted against them, even though these may have been deemed inappropriate in relation to other contemporary groups.

The destructive effects of these old patterns of social control are well known to those familiar with SRV, and are otherwise called "wounds" (Vanier, 1982). The wounds commonly experienced by older people in technologically dependent societies include:

  • Rejection. This happens when the older person is cast as better off away from the mainstream world. It is commonly masked by sanitising language which suggests that retirement and a 'quiet life' are more desirable states in later life than the challenges of mainstream living. Or the older person is asked to do things, or not do things, in the name of the protection of their physical health when actually it is not in the interests of the person concerned to disconnect from all challenges and risks - but it is serving the interests of other members of a culture that fears ageing.
  • Segregation. This happens when older people are separated and relocated "for their own safety", implying that what is happening is in the best interests of the older persons when it is actually in the interests of other people. It mirrors the narrow focus on the physical aspects of existence, as also illustrated above, which constricts the expectancies about, and of, the older person in society. Older people are then expected to find contact with only other old frail persons sufficient. In effect they become subjects of 'age cleansing' and 'age apartheid'.
  • Discontinuity. In order to access supports that they need, old persons are asked to (serially) break up relationships, home and the social roles of a lifetime.
  • Invalidation. This happens when the older person's concerns are not taken seriously, and belittled. It is particularly fuelled by the belief that all older people have the same disabilities, and in particular all have those cognitive disabilities that are associated with dementia. It is the insidious process underlying such common surface transactions as "We know you don't want to go into a care home, but you are not going to manage at home, your family are going to be worried about you, and you will be a risk both to yourself and to other people".
  • Blamed. Older people are likely to have the kinds of difficulties for which technical solutions are not enough. This sets them up as threats to the system and reminders of its failure. The individual with long term disabilities at any part of the life span can evoke this kind of reaction in society, but there has been a more powerful social movement for and by younger adults with enduring disabilities-- with the result that, at least in places, for younger adults, disability is seen to be in the context and not in the individual (i.e. lack of adaptiveness in the environment is what is disabling). Older people lose on two counts; they do not have access to the same high quality technical solutions that are more often expected by the younger person who has disabilities, but even if they do they may not regard such solutions as appropriate. It is not unusual for succeeding generations within a culture to seek to explain the 'ills of the world' by attributing the blame for failures in a society to the preceding generations. We project our subjective experience of the world's 'wrongs' on to an earlier generation, even though we are aware ourselves that one generation does not shape the social world.

The cumulative effects for communities of the transaction of these wounds in relation to older members include:

  • a deep sense of demoralisation, and
  • unstable social structures, resulting from age cleansing and apartheid.

The 'New' Paradigm

Technical approaches can be of help, but are never sufficient

Technical approaches can be of help, but are never sufficient, in the context of living with life long complex disabilities (O'Brien and Lyle, 1986). This principle must be even more important with respect to the earlier generations whose values include non-reliance on technology and the cultural sharing of practical wisdom, rather than technical 'solutions' to life's problems. This is true both for people living with physical disabilities and with dementia in their later lives. For example, 'intelligent houses' may keep older people who are frail safe, but they are not sufficient for ensuring that higher life needs are attended to, and may even threaten or weaken the continuation of more valued means of support such as human contacts. Their most obvious potential value may be in enabling the cognitively disabled older person to continue to occupy valued social roles in their community.

In the recent decade it has been more widely acknowledged that a person centred approach and methodologies is needed to guide our thinking about and services for disabled older people (Stirling, 1996; Kitwood, 1997; Woods, 1999; Cheston and Bender, 1999; Stokes, 2000).

In very late life there are many situations and circumstances which challenge the person in the human endeavour to retain personhood-- that is, the person's experience of living a life that is valued. In particular the person with cognitive impairments is exposed to challenges to their continued personhood. In the 'old'paradigm the tendency was to think defensively about the person with dementia-- that is, as significantly 'damaged' but still able to aim for limited goals. At best the person was thought about as massively neurologically damaged but still able to have some personhood through the efforts of caregivers who would adapt and support in the achievement of limited goals (Woods, 1999). At worst, the person was thought about as absolutely unable to be a person-- when there is no memory, it was argued, there is no reason, feeling or action (Sacks, 1985); of course, this is the view, ultimately, of the 'hypercognitive culture' (Post, 1995) in which there is an over emphasis on the value of cognitive abilities and a devaluation of the emotional and spiritual aspects of subjectivity and the interpersonal.

Does a life have value because it is human?

In this 'new' paradigm the question "Does a life have value because it is human?" (Smith, 2003) has to be answered with "Yes". Consequently, the person with dementia is fully human (emotionally, spiritually, socially and morally) despite and irrespective of any impairments of cognitive functions. The person's main difficulties are a result of their being challenged by an age-incompetent culture and a disabling social and physical environment.

The evidence about social roles in later life

In very late life there is evidence, if evidence is needed, that social roles have at least three ways of influencing well being (in the context of other destructive processes) (Cheston and Bender, 1999). The wider the range of social roles:

  • The more alternative means there are of maintaining self-esteem
  • The stronger is the sense of social identity
  • The more effective is the person's social network as a buffer against the stressful effects of life events and of a disabling environment.

    The interpersonal construction of personhood

    Again the situation of dementia illustrates in sharp focus the processes by which personhood may be denied - and by the same token how it may be reconstrued as an opportunity for 'us' (the community) to enhance our natural capacity for resilience and our qualities of constructive responsiveness in the face of adverse life conditions and trauma (Flynn, 2003; Snyder and Lopez, 2002).

    In dementia, what was individual and internal is again made over to the interpersonal (Kitwood, 1997):

    • Memory. Although memory may have faded it is still known by others, who 'hold' it for us. The 'old' paradigm way of thinking encouraged the idea that memory is in a 'place', perhaps like a black box inside the head; whereas actually it is created and recreated continually by interactions with the current environment and is held by others' memories. For example, the person with dementia who is "disoriented" is assisted by having others around who know their past, and who know who they are and where they are now. In interactions with such persons lies the security that the person seeks.
    • Identity. In large part, in the natural way of things, the identity of an individual is held in place by others, through the roles and relationships that others transact with the person. Identity is not a 'thing' that can exist in isolation, in a 'place' apart from others. Even in the absence of others (for example the individual in solitary confinement) humans still use facsimile social roles and self-reflective thought. The person with dementia who acts "aggressively", for example, is probably desperately seeking contact with familiar persons who will mirror and accept their 'real self'. By the same token they may reject other persons, such as current care-givers, because they do not and cannot fulfil this role.
    • Thoughts. In the natural way of things the interpersonal 'now' helps the individual to hold, arrange and make sense of their thoughts; when thoughts become tangled, as in dementia, there may be huge effort involved in making sense of the world as experienced - but interpersonal processes are always able to assist in holding the 'now' experience as meaningful.
    • Feelings. Feelings in response to the progress of dementia may include fear, worry, and even terror to a greater intensity than has previously had to be endured in a person's life; in the 'old' culture the effect of these on behaviour would be seen as further "symptoms" of the disease, resulting in a likely invalidating response and a consequent escalation in fear levels. In the 'new'paradigm the person with dementia is fully understood as having these feelings in response to their dilemma; consequently the way is open for their feelings to be expressed and met with a validating non-judgmental response. In the 'new' paradigm there is the potential for the community to respond genuinely and competently to the feelings of its more vulnerable members, and in so doing to grow in their own resilience and capacity to cope with not only others' but their own difficult experiences and intense feelings.

      What this analysis means for technologically dependent societies

      • This means raising awareness, to acknowledge that technological advances have made society more able to eliminate or marginalise its 'unfixables'.
      • It points to the need for all members of society to learn ways to negotiate openly relationships with older people and people who are dying; only through these relationships will individuals acquire the courage and sensitivity to live openly with fears and the fact of individual death-- through sharing experiences and learning directly alongside other individuals in our community, not through distancing ourselves from ageing, dying and death.
      • The process of ghetto-isation as an escape from a hostile world has to be exposed for what it is and prevented. The growth in "gated communities", even where people say they need them, has to be questioned and challenged. Our societies need to be conscious that those who would profit from offering 'sheltered' environments to older, frail and terrorised people only address a state of panic and only offer a short term possibility of refuge; they have no way of creating sustainable or renewable social environments. Such 'communities' as they age will lose their attraction for newcomers and consequently will lose diversity and fail to meet the expectations of their first cohort. They are analogous to refugee camps, which initially swell as terrorised people see them as their only possibility; but at a critical point they become less attractive than any of the other (unpleasant) possibilities and people may even leave them at risk to their lives because the 'community' has become a worse threat than the initial terror from which they fled.
      • There is a need to explore and offer more widely the vision that 'eternity' is embodied in taking care of each other and of the environment on which we all rely (in ways that are sustainable and accessible by all). In this definition of 'eternity', the end of an individual life has meaning and purpose; the concept is of community eternity not of individual eternity, and the individual life is regeneration of the community life. In contrast, the vision of the individual living for ever presents a picture of a mechanistic, uniform, and technology dependent future (Smail, 1987). The increasing 'hunger' for spirituality in the technologically dependent world reflects this unmet need.
      • There is the need to distinguish 'growing up' from 'growing old', and to consider that growing up applies to communities and not just to individuals. To understand 'growing up' requires an understanding of the more 'advanced' values in society, such as compassion, humility and trust. These values are not attached to the individual exclusively but are underpinned by the quality of the relationships that are fostered within a society. Societies in which individual achievement and material consumption are encouraged and valued over other qualities, are unlikely to 'grow up' in this way. Neither are they likely to generate the conditions in which individuals will 'grow up'. Historically in our societies, technology has tended to be more harnessed to the promotion and survival of the individual (e.g. used in economic production, technology dependent food production, and technology dependent health care) than to collective purposes (e.g. renewable energy production, sustainable food production, or prevention of illness and disability). The ecological belief (see Table One) about the place of ageing and death in our societies enables us:- to respond to individual ageing as an enriching and regenerative force at the societal level; to see ageing and intergenerational relationships as central to the transmission and enacting of the 'higher' human values; and to challenge the values of technical fixing and individualism.

      A New Kind of Service

      People with significant disabilities as a result of dementia live in their own homes for life with whatever personalised support it takes

      A new service was set up in Newcastle upon Tyne in the UK in the early 1990s, called Dementia Care Initiative. DCI set out to make it possible for people with significant disabilities as a result of dementia to live in their own home, with whatever personalised support that it took (Svanberg, Fairbairn and Stirling, 1998; Dementia Care Initiative Annual Report, 1995-96).

      In this service family and neighbourhood are involved and included in daily life as partners in an ordinary way. They also help in developing the whole programme of support for people with dementia. Always the person with dementia, however, is the first focus when planning the goals of support. Immediate (crisis) needs are distinguished from long term (life support) needs, and personal plans are devloped once the immediate, or crisis, needs have been addressed; this prevents life-defining decisions from being made at a time of crisis (for example, after a fall) since decisions at such times commonly lead to inappropriate forms of care including institutionalisation. Flexible use of funds for the personal care plan enable peaks of spending to cover crisis episodes at any time and recurrently (for example, extra assistance at home until a broken leg has healed). The person centred flexible assistance means that the cost on average is no more and sometimes less than traditional forms of care for (significantly) disabled people with dementia, and that the person is able to live at home without threat - the fear of 'failure' and the sense of being 'on trial' in your own home is removed from the experience of living with dementia.

      Where a person does not wish to live alone any longer, the programme enables relationships to be established and thereafter choices to be made about shared living in an ordinary house. The person with dementia is a tenant in independent living, and the possibility is a popular choice for people who cannot or choose not to live in their original own homes.

      The focus of both the independent living homes and the personal support at home is on maintaining life goals and patterns in the interests of the person concerned. For example, roles and relationships are explicitly supported by employing local people who know the neighbourhood and the people, and who will support the person not the dementia. The focus is not on eradication (management) of "challenging behaviour", as is so often the case in traditional or 'old' paradigm services. Behaviour is seen as an expression of meaning (for example, moving around a lot may actually be seeking a lost person, or seeking a purposeful occupation) and an expression of feelings (for example, angry behaviour may actually be a result of feeling frustrated and betrayed by apparent strangers who seem to with-hold the truth and restrict living the life we remember). When behaviour is seen as an expression of meaning and feelings, rather than as damaged neurones, this calls for better understanding and action from 'us'.

      Conclusion

      Teaching communities how to (and that they can) support older people with significant disabilities (including older people with dementia) in valued ways, to live valued lives, is not only possible as demonstrated by the success of this programme, but is critical for the ageing individual (i.e. each one of us) and also for the success, maturation and health of our communities (Stirling, in writing).

      References

      Cheston, R. and Bender, M. (1999) Understanding Dementia. The man with the worried eyes. London: Jessica Kingsley Publishers Ltd

      Dementia Care Initiative DCI Annual Report, 1995 - 1996, Newcastle upon Tyne

      Flynn, R. (2003) Hope, Resilience and the Good Life, Third International Social Role Valorization Conference: Leadership and Change, University of Calgary, Canada, June 4-7

      Kitwood, T. (1997) Dementia Reconsidered. The person comes first. Buckingham: Open University Press

      O'Brien, J. and Lyle, C. (1986) Framework for Accomplishment, Georgia: Responsive Systems Associates Inc.

      Smail, D. J. (1984) Illusion and Reality. The meaning of anxiety. London: J M Dent & Sons Ltd

      Smail, D. J. (1987) Taking Care: An alternative to therapy, London: J M Dent & Sons Ltd

      Snyder, C. R. and Lopez, S. J. (2002) Handbook of Positive Psychology, Oxford

      Smith, W. (2003) Issues of Deathmaking and SRV, Third International Social Role Valorization Conference: Leadership and Change, University of Calgary, Canada, June 4-7

      Stirling, E. (1996) Social Role Valorisation: making a difference to the lives of older people? In R. T. Woods (ed.) Handbook of the Clinical Psychology of Ageing, Chichester: Wiley

      Stirling, E. (in writing) Psychological Practice with Older People, In T. Lavender & J. Burns (eds.) Book Series Clinical Psychology in Practice: the individual and the social context, London: Sage

      Stokes, G. (2000) Challenging Behaviour in Dementia. A person-centred approach, Bicester: Speechmark Publishing Ltd

      Svanberg, R., Stirling, E. and Fairbairn, A. (1998) An ordinary house in an ordinary street, Journal of Dementia Care, Sept/Oct, 12 - 14

      Vanier, J. (1982) The Challenge of L'Arche, London: Darton, Longman and Todd

      Wolfensberger, W. (1987) The New Genocide of Handicapped and Afflicted People. Syracuse University New York: Training Institute for Human Service Planning and Change Agency, New York

      Wolfensberger, W, and Thomas, S. (1983) PASSING Programme Analysis of Service Systems: Implementation of Normalization Goals, Ontario: Canadian National Institute on Mental Retardation

      Woods, R. T. (1996) Handbook of the Clinical Psychology of Ageing, Chichester, Wiley

      Woods,R. T. (1999) The Person in Dementia Care (In Memory of Tom Kitwood) UK: University of Wales Bangor


      Submitted by Elspeth A. Stirling, Clinical Psychologist (Services for Older People)

      National Health Service Tayside

      Sunnyside Royal Hospital

      Hillside

      Montrose

      Angus DD10 9JP

      E-mail: elspeth.stirling@tpct.scot.nhs.uk


       

      International Journal of Disability, Community & Rehabilitation
      Volume 3, No. 1 SRV Edition
      www.ijdcr.ca
      ISSN 1703-3381