of people with dementiaThis essay will analyse the extent to which the values of normalisation/social role valorisation apply in respect of care for people with dementia.
The essay will begin by briefly acknowledge Nirje’s principles of normalisation and then outline the seven core themes of Wolfensberger’s theory of normalisation. These will incorporate some criticisms of wolfensberger’s work by other writers.
The essay will move on to outline Tom Kitwood and colleagues contribution to the recognition of the ‘person’ suffering with dementia, to show how a person is made up of many complex interactions. I will outline what Kitwood terms ‘The Malignant Social Psychology’ surrounding the dementia process and the dangers of adopting a theory based solely on the ‘medical model’.
Finally I will give a brief outline of policies leading up to the NHS and Community Care Act 1990 and analyse to what extent present day policies and future initiatives reflect the principles of normalisation and personhood.
The concept of normalisation originated in Scandinavia during the 1960’s, and was further developed in North America. (Emerson, 1992). In its Scandinavian beginnings normalisation had a significant impact upon the development of services and associated enabling legislation for people with learning difficulties. (Nirje, 1969). For Nirje normalisation was first and foremost an issue of human rights based on the recognition of people with a mental handicap as our fellow human beings and citizens. (Robinson, 1989). Nirje defined normalisation as:
Making available to all mentally retarded people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life of society.” (Nirje, 1980:33).
In 1972 Wolfensberger proposed a more enhanced definition of normalisation which he defined as:
“Utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are as culturally normative as possible.” (Wolfensberger 1972:28).
Wolfensberger subsequently replaced the term ‘normalisation’ with the concept of ‘Social Role Valorisation’, (SRV) which he is defined as: “The application of what science can tell us about the enablement, establishment, enhancement, maintenance, and/or defence of valued social roles for people.” (Wolfensberger, 1995).
Wolfensberger claims his theory of Normalisation/SRV rests on a solid foundation of well-established social and behavioural science theory. (Wolfensberger, 1983). It incorporates multiple bodies of inquiry such as, the sociology of deviancy; learning theory; role theory; the function and power of social imagery; mind-sets and expectancies, the social and psychological process involved in unconsciousness; and group dynamics. (Osburn, 1998)
Wolfensberger and Tullman (1989) break the normalisation theory into seven major core themes, which serves to aid the understanding of it, as follows:
1.The role of unconscious in human services: This is concerned with the unconscious negative dynamics pertaining to human services that contribute to the devaluation of particular groups of people in society. The techniques of ‘Program Analysis of Service Systems’ (PASS) (Wolfensberger and Glenn, 1978) and Program Analysis of Service System’s Implementation of Normalisation goals (PASSING) (Wolfensberger and Thomas 1983) are proposed by their authors as suitable for assessing how far services enhance service users social image and the personal competence.
I have decided to combine the following two core themes to show how they are interrelated.
2 and 3. The relevancy of role expectancy and role circularity to deviancy making or deviancy unmaking; The developmental model and personal-competency enhancement: The two major strategies for pursuing the goal of SRV are ‘enhancement of a person’s image in the eyes of others’ and ‘enhancement of their competencies’. Image enhancement and competency enhancement forms a feedback loop that can be either negative or positive. That is, a person who is competency-impaired is at risk of enduring image impairment; a person who is image impaired is inclined to be responded to by others in ways that decrease the person’s competency. Both processes also work equally in the reverse direction. That is, a person’ whose social image is positive is likely to be provided with experiences and expectancies which are likely to increase his/her competencies; and a person who exhibits competencies is apt to be imaged positively. Thus, Wolfensberger asserts that human services should do everything in their power to ensure that devalued people establish as many positive social roles as possible in order to break the pattern of negative role expectancies producing self-fulfilling prophecies.
4. Conservatism corollary to the principle of normalisation: When a persons holds valued social roles, attributes of theirs that might otherwise be viewed negatively are more likely to be put up with, overlooked, or even dismissed as relatively unimportant. Wolfensberger and Tullman (1989) state that if a person deviances are far greater than what would be considered to be a ‘normal amount’ then they exist in a state of heightened vulnerability. They state that “the greater number, severity and/or variety of deviancies or the greater number of deviant people there are in a group the greater the impact of devaluation. (p 216). Wolfensberger and Tullman (1989) propose compensating for this eventuality suggesting that, “on occasions where either a suit and tie or a sports jacket and sports shirt are equally appropriate attire, the man at value risk in society would fare better wearing the suit-and-tie combination”. (p 216).
Perrin and Nirje (1989) Criticise Wolfensberger’s conservatism corollary, reasserting that the key elements of normalisation originally proposed was more concerned with devalued people living a life similar to that of others. They maintain that Wolfensberger’s principles clearly contradict this by setting different standards for devalued people to that of ‘normal’ people. They confirm this by pointing out that if a handicapped person associated with a programme under assessment by PASS refused to conform to ‘wearing the suit and tie,’ the programme would be downgraded in its assessment irrespective of the personal preference of values of the client. (Perrin and Nirje,1989:225).
5. The power of imitation: normalisation supports the integration of devalued people with people who function routinely in an appropriate and valued way. This notion is based on the assumption that people are apt to imitate others behaviour and suggests that positive rather than negative role models will encourage behaviour closer to the norms of society and thus produce acceptance. Wolfensberger claims that this is crucial if we are to challenge the negative stereotyping that people with disabilities endure.
Criticisms of normalisation and SRV are frequently associated with the fact that these principles stress the importance conformity to social norms. Baxter, et al (1990) point out that what is normal within a particular culture may be of questionable value to some people within that culture. Smith and Brown (1992) also criticise normalisation for its assumption that there are and homogeneous set of ‘valued people’ and ‘acceptable behaviours’ to which people with disabilities can aspire to. They state that this assumption bypasses difference of class, gender and ethnicity. Baxter, et al (1990) asserts that a philosophy that stresses conformity to current social norms is essentially conservative and can be seen as operating to the detriment of devalued groups. Some writers have pointed out that service providers may take white values as the norm and impose them on service users for whom they are inappropriate, for example ethnic minority communities.
6. The importance of societal integration and valued participation: This statement claims that segregation, for example, institutionalisation is inclined to make people more devalued and more dependent. Normalisation requires that devalued persons are integrated into the valued social life of society by providing the means to enable them to live in, normative housing; to be educated along with their non-devalued peers; work in the same facilities as other people; and be involved in recreation, shopping and all the other activities that valued members of society engage.
7. The dynamics and relevance of social imagery: This refers to the conveying devalued persons in a positive light rather than a negative one which will rub off on the person and add further to their detriment. This has far-reaching implications for human services, as negative images can be unconsciously displayed in many ways throughout society, for example in newspapers, on posters and also in the way that devalued citizens are referred to in relation to their diagnosis.
The malignant social psychology surrounding the dementing process.
Tom Kitwood has conducted a series of studies, which has been influential in recent years. These deal with the social psychological environment that surrounds older people with mental health problems. The term, malignant social psychology was coined by Kitwood and well describes the social psychological environment faced by many who has one of the conditions termed dementia. He describes the processes and interactions that tend to depersonalise a person who suffers from dementia. Ten aspects of what Kitwood terms the malignant social psychology are illustrated as follows:
1. Treachery Some form of trickery or outright deception is used by others in order to get the dementia sufferer to comply with their wishes.
2. Disempowerment Things are done for a dementia sufferer which he or she is actually able to do, albeit clumsily or slowly: there is a consequent deskilling and loss of the sense of urgency.
3. Infantilisation This is a more extreme form of 2. But also accompanied by subtle messages which imply that the dementia sufferer has the subjectivity of a very young child.
4. Intimidation The dementia sufferer is made afraid by such processes as psychological assessments or head scans, these being carried out in an impersonal way: sometimes intimidation includes threats or actual violence.
5. Labelling A confused elderly person is given a diagnostic label such as ‘primary degenerative dementia’ or ‘Alzheimer’s disease’. Expectations of progressive decline and derangement are set up, and a self-filling prophecy comes into play.
6. Stigmatisation This is an extreme form of labelling, but carries connotations of exclusion. As a result the dementia sufferer becomes a diseased object, an alien, an outcast.
7. Outpacing Communication with a dementia sufferer often occurs much more slowly than with those who have no impairment. Caregivers and others pay no heed to this and so fail to establish good contact.
8. Invalidation The experience of the dementia sufferer, especially in relation to emotions and feelings is not seriously understood and accepted by others.
9. Banishment The dementia sufferer is removed from the human milieu and left on his own, either physically or psychologically: this is rather like being ‘sent to Conventry’.
10. Objectification The dementia sufferer gradually ceases to be treated as a person and comes to be treated in some respects like a lump of dead matter, to be pushed around, manipulated, drained, filled, dumped etc. (Kitwood, 1990) and (Kitwood and Bredin 1992).
Bell and McGregor point out the dangers of adopting a theory of dementia based solely on the medical model. They state that it pre-determines the passage of a person’s future and deprives a person of the opportunity to realise their true potential. They also maintain that it ties a person into a ‘syndrome’, which casts aside the fact that they are still a human being, and thus, offers a hopeless future of inevitable decline. (See DSM-IV for the diagnostic criteria for dementia)
Tom Kitwood and others developed the concept of personhood. The personhood approach is an attempt to reinstate the person as a living person who has a particularly distressing illness. (Goldsmith, 1996). Whilst not rejecting the contribution of medicine, Kitwood argues that there needs to be a shift in the way we approach dementia. Instead of recognising only the deficits, damages and problem behaviours, we need to see a person as a whole. This does not mean denying that there is a dementing illness but alternatively setting it in a social rather than a medical context. Kitwood (1993) states that an understanding of a persons dementia should be the result of a complex interaction between their personality, their social psychology (social relationships), their physical health, their biography of life, and their neurological impairment. He argues that all these factors go together to make a person who they are, and that to focus on only one of these factors is to treat a person as less than whole. (Kitwood 1993).
Kitwood and Bredin (1992) state that there is evidence to show that some individuals have shown signs of reversal or ‘rementia’ when their social relationships and their conditions of life have changed. They do, however, acknowledge that this evidence is purely anecdotal in type, nevertheless, they maintain that there seems no reason to doubt it and that in some cases they have actually met the individuals concerned. A second line of evidence concerns a study that confirms the productiveness of seeing a person as a whole. This study compared two groups of people who were comparable in their degree of dementia. The first group was given a programme of activities that occupied about 40 hours a week, plus a medical and psychiatric check-up weekly. Whereas the second group received a traditional amount of care which provided activities for around 3 to 5 hours per week and a monthly medical check-up. After one year only two of the first group showed signs of further deterioration, as oppose to 9 of the second group. The findings of this study was encouraging because those in the first group were slightly younger that those in the second group and it is customary for an accelerated decline for those with early onset dementia. A third line of evidence came from an experiment carried out on ‘geriatric’ rats. Some of the rats were placed alone in impoverished environments and as they aged their brains deteriorated (Confirmed by post-mortem study). Some the rats were then placed in new environments with plenty of activities and the company of other rats. The experiment showed that the rats declining brain underwent substantial neurological development and were revived solely as a result of a change in their environment. Kitwood and Bredin, (1992) concluded that comparable neurological development can also occur in the human brain, since the nature of the grey matter in rats and humans are similar. They also state that:
“If some degree of ‘rementing’ can be brought about purely through human interaction; if some sufferers do stabilize when provided with a care environment that fosters activity and cooperation; if the ageing and damaged brain is capable of some structural regeneration, then there is ground for looking on dementia care in a positive way”. (Kitwood and Bredin, 1992:280).
To what extent does policies reflect the normalisation/personhood approaches?
The history and future developments of more independent services.
The traditional treatment of people with mental and physical disabilities was in large hospitals built on the outskirts of most towns. Once patients went into such hospitals they rarely came out. Living their lives within institutions led to people becoming institutionalised, dependent on the routines of the hospital to a point were they could no longer function outside of its walls. (Young 1995).
Concerns over these issues led to a search for alternatives. Arguments for community care were strengthened by sociological critiques of institutional life. (Gothman, 1968).
The Griffith report ‘Community Care: Agenda for Action’ was published in 1988. This report recommended that the Local Authority Social Service Departments should be responsible for assessing individuals needs and arranging the purchase of whatever services they required. For example, domiciliary, day, and residential care. However, it was not is recommendation that the local authorities should provide the services. Griffith recommendations for the separation of purchaser/provider functions were one of the report’s most influential proposals. From this the term ‘enabling authority’ was coined and identified a direction in which local authorities provided an environment that enabled consumers to exercise choice and encourage the development of service provision within the private and voluntary sectors. The Griffith report became the blueprint for the white paper ‘caring for people’ which followed. Many of the reforms proposed by Griffith were later enacted in the NHS and Community Care Act. (Griffith, 1988).
The Social Services Inspectorate ‘At Home With Dementia’ states that:
“Community care policy for older people with dementia, as for all user groups is underpinned by the concepts of promoting choice and fostering independence” (DOH, 1997).
This report acknowledged many implications with regards to service delivery for people with dementia. It stated that it was difficult to ensure their active participation in assessment and care management processes, thus, it was difficult to know if they are ever presented with and exercise real choices. The report also stated that gender needs were poorly served by home care services because there was not enough male staff available when required. It was also acknowledged in the report that specialist services were only available to people whom lived in defined catchment areas. However this may be rectified by the governments recent proposals in the modernising social services document to impose national standards. This report also acknowledges that independence can carry a great deal of risk in respect of people with dementia and the challenges this can pose on social and health care agencies. A recent government publication, ‘No Secrets: The Protection of vulnerable adults has laid down specific guidelines that statutory agencies must follow to ensure that vulnerable adults are protected from risk of abuse.
The guidance gives a clear definition of what is considered to be a vulnerable adult. This includes older people with disabilities or impairment, particularly when their situation is complicated by additional factors such as “physical frailty or chronic illness, and sensory impairment”. (p7).
The guidance also itemises the different forms of abuse that can take place, for example:
? Physical abuse: this includes such things as hitting, restraint, misuse of medication, etc.
? Psychological abuse: this includes such things as deprivation of contact, controlling, isolation or withdrawal from supportive networks, intimidation etc.
? Financial abuse: this includes theft, exploitation, pressure in connection with wills,
? Neglect: this includes ignoring medical or physical care needs, failure to provide access to health and social care services, etc.
The guidance has also incorporated the concept of ‘significant harm’ introduced by the Children Act and suggests that ‘harm’ should be taken to include “the impairment of, or avoidable deterioration in, physical or mental health; and the impairment of physical, intellectual, emotional, social or behavioural development”. (p9).
The Government’s response to the Health Committee’s Report on Long Term Care.
The government states that it is committed to improving the quality of life of older people and to preventing or delaying the onset of dependence through various initiatives. The report also states that they will give an extra 140 million to local authorities over a three-year period to provide a wider range of support services to carers. They also intend to extend direct payments to people over 65 to allow them to exercise further choice in service provision. (DOH, 1999).
In conclusion the values of normalisation appears to have come a long way in enabling society to recognise that all people have potential for growth when they are accorded the opportunity to do so. How far these ideals can be stretched to practice in respect of people suffering from dementia remains to be seen in the light of the implications that surrounds dementia care. However, the author believes that we should strive at all levels to increase the knowledge of dementia in respect of the possibility of ‘rementia’.
Recent policies seem to recognise more now than ever before that people suffering from dementia deserve to have a the right to independence, a choice in the provision of care that they receive, and that they deserve the same respect that is accorded to all.
The essence in supporting people and making a connection with a person based on mutual respect and trust requires firstly knowing yourself and (not only as a professional) and secondly, learning who the person is. This is by no means easy to sustain in the formal human services. It takes real effort in a service system to maintain a connection with a person and to learn who that person is. Perhaps the essence of quality in a service also lies in simplicity and informality
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