Psychological Treatments for People with Learning Disabilities
The term 'psychological' is used in this contribution to distinguish psychotherapeutic approaches to treatment for emotional and behavioural disturbance from those involving physical treatments, environmental manipulation or behaviour modification. In practice there is considerable overlap between, and concurrent use of, such interventions.
Roger Banks (UK)
Until relatively recently, people with learning disabilities were overlooked or actively excluded from psychotherapies. Traditional schools of psychotherapeutic theory and practice maintained that the presence of intellectual impairment was a reason for excluding people with learning disabilities from treatment, in spite of the lack of empirical evidence that such individuals do not benefit or at least are not harmed by psychotherapy. Bender (1993) provided an elucidation and critique of the history of this exclusion from early psychoanalysis through to patient-centred counselling and cognitive-behavioural therapies. He described the 'therapeutic disdain' of mental health professionals towards people with learning disabilities (and to other 'minority' groups). He suggested that a psychotherapeutic relationship involves an intense and intimate interaction with another individual over a prolonged time; this intimacy is difficult to tolerate and requires more energy when the individual is perceived as 'unattractive' (Figure 1).
However, there have always been psychotherapists, psychiatrists and clinical psychologists with a different perspective who have seen the value of applying psychotherapeutic techniques to work with people with learning disabilities. Following pioneering work in the psychoanalytic field by Symington, Sinason, Hollins, Frankish, Beail and others, there has been a steady growth in the publication of accounts of a wide range of therapies in different settings.
|FIGURE 1: Bearing the unbearable|
Anna, a 40-year-old woman with Down's syndrome, had been taken on for therapy by a social worker training for her diploma, with supervision from a consultant psychiatrist.
Anna's parents had demanded that 'something be done' about their daughter, who caused them endless annoyance with her 'silly' and socially repellent behaviour. In the middle of the fifth session of what had already been a laborious and difficult-to-focus therapeutic process, everything ground to a halt. Patient and therapist sat frozen in uncomfortable silence. The therapist was overwhelmed with a strong sense of having lost direction, of being unable to think about what to say next and of feeling embarrassed by her inability to 'say the right thing'. At this point, Anna leaned forward until her face was only a few inches away from the therapist's and in a loud voice with exaggerated emphasis, as if talking to an idiot, said 'I haven't got a brain you know!'
The need for psychotherapy
So profound has this change in attitude and practice been that in a survey of psychiatrists and psychologists carried out in 2002 by a working group of the Royal College of Psychiatrists, 83% of respondents said that there was a moderate or high demand for psychotherapy for people with learning disabilities (Figure 2). Only 3 out of 424 respondents said there was no demand, and none of these worked in the area of learning disability. While the ethical and human rights arguments for the provision of therapy are valid, it is also important to consider the clinical indications for treatment.
|FIGURE 2: Conclusions of a UK survey of the provision of psychotherapy to people with learning disabilities |
(Royal of College of Psychiatrists' working group on psychotherapy in learning disability, 2002)
Early development: as Winnicott pointed out, a child's first mirror is its mother's eyes (Winnicott, 1971). A person's psychological and emotional development is affected by the presence of intellectual impairment and by the sensory and physical disabilities that may accompany this. The quality and reciprocity of communication and physical contact with the primary care-giver - usually the mother - can be impaired to varying degrees, resulting in:
o fragility of emotional attachment
o delayed development of self and object constancy
o impairment of symbol formation and of separation-individuation of self from care-giver.
Lifelong dependency/vulnerability: people with learning disabilities, either out of necessity or because of the limited expectations of others, tend to be highly dependent on other people for care and protection; they are also less able to deal with choices, problems and challenges. This makes them vulnerable, and it is well known that people with learning disabilities are more likely to be sexually abused.
Family relationships: the birth of a disabled child can be experienced by parents as a loss of the anticipated 'healthy' child (see also Lindsey, PSYCHIATRY 2003; 2:9: 48). This bereavement can be a lifelong issue that becomes reinforced at various life stages and by the individual's inability to fulfil the 'normal' expectations of our culture and society. Siblings may also be affected, experiencing difficult and conflicting emotions such as loss, resentment or guilt.
Mental health: the prevalence of psychiatric disorder in people with learning disabilities is higher than in the general population (see also Prasher, PSYCHIATRY 2003; 2:8: 11); estimates range between 10% and 39%. In addition to defined disorders, there may be traits and symptoms (such as identity disturbance, problems with symbolization and concepts of reality) that are similar to poorly integrated or borderline personality disorders.
The validity of psychotherapy
The 1996 Strategic Review of NHS Psychotherapy Services in England strongly endorsed the role of psychological therapies in the treatment of mental health problems and proposed that these should be comprehensive, coordinated, patient-focused, safe, clinically effective and cost-effective. The Department of Health subsequently produced Guidelines for Treatment Choice in Psychological Therapies and Counselling in 2001. Although people with learning disabilities were not specifically considered, no evidence was presented that psychological therapies do not work for this patient group. Indeed, it stated that:
'We acknowledge that, in the case of people with learning disabilities, there is no clear boundary to identify where this guideline ceases to apply. It should not be assumed that people who have mild-to-moderate cognitive impairment fail to benefit from the mainstream therapies described here …' (Department of Health, 2001).
Mainstream or specialist therapies?
Most people with learning disabilities have mild-to-moderate intellectual impairment and so it might be expected that the application of psychotherapy would differ little in technique or effectiveness. With greater degrees of intellectual impairment and accompanying cognitive, sensory or communication deficits, there are considerable differences and modifications that have to be taken into account. Therapists working with people with learning disabilities have described some of the differences in therapy and some of the issues that are related to the person's experience of having a disability, which are not necessarily related to its severity.
General therapeutic issues
These issues are commonly encountered and, if not acknowledged or adequately addressed, can lead to a lack of accessibility of therapy. The past failure of therapists to adapt their practice or understanding can be projected onto patients, who are thus labelled as 'unsuitable' for therapy:
Referral and consent: individuals rarely exercise their own choice and refer themselves for therapy. Some may express a wish to talk to someone about their problems or it may be suggested to them by carers or other professionals. More usually a health professional with experience, knowledge or training will identify a 'need' for therapy from aspects of the person's mood, behaviour or personal history. While referrals in the general population tend to indicate the person's wishes about therapy and its outcome, for people with learning disabilities it is the expectations or dissatisfactions of carers or the aspirations of the referrer that are highlighted, without a clear indication of whether these have been discussed with the person being referred.
The initial assessment will need to clarify consent and explore the meaning of therapy. The therapist may need to focus on the patient's understanding of why they are there and what they expect or wish to happen. It can be difficult to establish whether the patient is making an informed choice and if they have the capacity to do so (see also Keywood and Flynn, PSYCHIATRY 2003; 2:9: 59-62). Consent may have to be inferred from the person's demeanour, mood, cooperation or willingness to remain in the room or to return. Because people with learning disabilities tend to try to please others this can place them in a vulnerable position in relation to therapy and the therapist. This has significant implications for the regulation of training and supervision for therapists working with this patient group.
Confidentiality: maintaining the therapeutic process relies on a greater degree of communication and support from carers and fellow professionals than in the general population. Sharing of information and/or concerns may be needed, particularly if there is a history of abuse. Too rigid an approach to confidentiality can undermine the process and value of therapy, yet the patient needs to be able to trust the therapist. It is essential to make the therapeutic boundaries clear from the outset for the patient, carers and others. Good communication can be ensured by the joint formulation (between therapist and patient, and between therapist and carer) of letters, and by telephone calls and agreed meetings to discuss general progress and mutual concerns.
Accessibility: people with learning disabilities do not usually travel independently and have to rely on others to take them to appointments. Regular attendance over a long period requires considerable commitment of carers' time and resources and special arrangements for cover in staff teams. The progress of therapy can be easily jeopardized by anything that threatens the reliability of necessary support and escort, such as financial constraints, staff shortages or failure of communication.
Carers who have to make a regular commitment to supporting an individual's attendance for therapy may experience feelings of impatience or envy with the process and may also wish to know what is happening in the therapy. If these issues are not addressed, then therapy can be undermined. A second professional or key-worker who can provide liaison, support and communication is helpful.
The therapeutic relationship: the fundamental importance and efficacy of the therapeutic relationship is common to all psychological therapies. It is characterized by attentiveness, empathy, consistency, warmth and non-intrusive concern. People with learning disabilities whose early relationship experiences have been of rejection or lack of intimacy, and who expect to be devalued or disliked, may find it difficult to form a trusting treatment alliance. If the therapist takes the concept of 'analytic neutrality' too literally, they may be perceived as cold, rejecting or lacking in concern.
A greater degree of warmth and friendliness, combined with a more flexible approach to the timing of sessions and the use of physical touch, can help to establish a more positive and trusting relationship, although this may be at the expense of the patient's ability to express and process negative emotions in therapy.
Communication: it can take time to establish an effective communication style in therapy. Non-verbal communication and the use of adjunctive methods such as drawings, doll figures and picture books are emphasized; art, music, play and drama therapies are particularly prominent. If difficulties in communication are experienced, it is important that silence can be both tolerated and used therapeutically.
Particular therapeutic approaches
Psychodynamic therapies: adapting traditional psychoanalytic methods has enabled considerable progress to be made, and a variety of related approaches are being developed. Sinason (1992) has written extensively in this area, with vivid illustrations of case material. She emphasized the significance of secondary handicap as a defence against the trauma of disability. Together with Hollins, she described issues that commonly arise with this patient group, which are too painful to address in everyday life, and thus assume the nature of taboo subjects or 'secrets' (Figure 3). Beail demonstrated the effectiveness of out-patient-based therapy using a Kleinian model for a group of individuals with challenging and offending behaviour, and Frankish described positive outcomes in an emotional-developmental framework derived from the work of Margaret Mahler.
|FIGURE 3: 'Secrets' or taboo subjects in the lives of people with learning disabilities|
Cognitive-behavioural therapies: cognitive processes are now seen as more significant in behaviour modification, and specific treatments for anxiety and depression are also used. People with learning disabilities find it difficult to recognize and accurately label emotional states in themselves and others, but this has been successfully addressed by approaches to anger management in groups and with individuals. Treatment should be modified to suit the individual's level of functioning, using non-verbal materials, visual aids such as drawings, symbols, photographs and dolls, and role play.
Family/systemic therapies: many people with learning disabilities live with their own families, and most others live in family-type groups such as group homes or hostels. In spite of this, little has been published about family and systemic work, although these models are influential (see also Jacques, PSYCHIATRY 2003; 2:9: 39-42). Concepts of 'loss' may need to be worked through at various stages of the family life-cycle, such as loss of the 'normal' child or sibling, or loss of aspirations for the individual's future development. The roles assigned to members of families are often the source of difficulty or dysfunction. A person with learning disabilities may be expected to be inept or incapable in all circumstances; or they may be seen as 'special' or a family 'pet'. They may fulfil a role that keeps family or parental relationships intact or provides a focus for dysfunction.
Assessing the effectiveness of therapy
There have been few studies of the effectiveness of psychotherapy for people with learning disabilities, and the lack of access of such people to therapy generally has led to their being excluded from mainstream research. Professionals using psychotherapeutic interventions believe in their efficacy, however, and many case studies have been reported. Some small outcome studies on psychoanalytic treatment have shown encouraging results that warrant further investigation. Prout and Nowak-Drabik (2003) reviewed 92 reports on the use of psychotherapy in people with learning disabilities between 1968 and 1998; the majority were behavioural treatments and none was psychodynamic. A meta-analysis found that there was evidence of good outcome. An expert panel analysis concluded that psychotherapy could be effective and beneficial for people with learning disabilities; comparisons could not be made on the relative benefits of different treatment modalities.
|FIGURE 4: Barriers to research|
Numbers of participants
Obtaining consent for treatment and participation in research
Lack of reliable and valid measures of change
Obtaining interest and funding for large-scale projects in an area that is a low priority
Research in this area is dogged by difficulties and the 'gold standard' of the randomized controlled trial is virtually unattainable (Figure 4). Future research is likely to concentrate on the development of reliable and valid outcome measures and the establishment of a large multi-centre observational study.
Beail N. Psychoanalytical psychotherapy with men with intellectual disabilities: a preliminary outcome study. Br J Med Psychol 1998:71: 1-11.
Bender M. The unoffered chair: the history of therapeutic disdain towards people with a learning difficulty. Clin Psychol Forum 1993: 54: 7-12.
Department of Health. Guidelines for Treatment Choice in Psychological Therapies and Counselling. London: The Stationery Office, 2001.
Jacques R. Family Issues. Psychiatry 2003: 2:9: 39-42.
Keywood K & Flynn M. Healthcare Decision-making by Adults with Learning Disabilities: Some Levers to Changing Practice. Psychiatry 2003: 2:9: 59-61.
Lindsey M. Overview of Learning Disability in Children 2003: 2:9: 47-50.
NHS Executive. Strategic Review of NHS Psychotherapy Services in England. London: Department of Health, 1996.
Prasher V E. Epidemiology of Learning Disability and Comorbid Conditions. Psychiatry 2003: 9-11.
Prout H T, Nowak-Drabik K M. Psychotherapy with persons who have mental retardation: an evaluation of effectiveness. Am J Ment Retard 2003; 108: 82-93.
Winnicott D (1971). Mirror-role of mother and family in child development. In: Playing and Reality. Harmondsworth: Penguin, 1986.
Books Beyond Words series. London: Gaskell.
(A series of 28 picture books to support counselling and information-sharing with people with learning disabilities.)
De Groef J, Heinemann E. Psychoanalysis and Mental Handicap. London: Free Association, 1999.
(A wide-ranging European perspective on psychoanalytic approaches.)
Hollins S, Sinason V. Psychotherapy, learning disabilities and trauma: new perspectives. Br J Psychiatry
2000; 176: 32-6.
Kroese B K, Dagnan D, Loumidis K. Cognitive Behaviour Therapy for People with Learning Disabilities. London: Routledge, 1997.
(A detailed and logical account of cognitive-behavioural therapy approaches to a variety of problems.)
Royal College of Psychiatrists. Council Report on Psychotherapy and Learning Disability; in press.
(A comprehensive overview of the current position of psychotherapy for people with learning disabilities in the UK.)
Symington N. The psychotherapy of a subnormal patient. Br J Med Psychol 1981; 54: 187-99.
(A classic text that marked a turning point in therapy for people with learning disabilities.)
The pictures illustrating this article are by Lisa Kopper, and are taken from I Can Get Through It by Sheila Hollins, Christiana Horrocks and Valerie Sinason. See www.rcpsych.ac.uk/publications/bbw.
|This article was first published in Psychiatry; Volume 2:9, September 2003 and reprinted with the kind permission of the Medicine Publishing Company.|