NADD Bulletin Volume V Number 3 Article 1

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Mental Health in Mental Retardation: Current Developments and Future Challenges in Europe (Lecture to the 3rd Congress of European Association for Mental Health in Mental Retardation, Berlin, Germany, September, 2001)

Anton Dosen, M.D., Ph.D.

Introduction

The European Association for Mental Health in Mental Retardation exists almost 10 years now. The past decade many important developments have taken place in the field of the mental health care of persons with mental retardation .

There has been an increase in the number of international conferences, national and international organisations, specialistic textbooks and journals, and scientific research, and correspondingly there have been new developments in the services and in staff training .

A decade ago , it was important to prove that psychiatric disorders existed among this population, and that these individuals were entitled to have access to mental health professionals. Currently, attention is focused more on the natural process of mental health disorders, how they differ from what is found in the general population, and what this implies for the treatment approach. There are no doubts any more that most individuals with mental retardation and behavioural and psychiatric problems may benefit from appropriate treatment, and may recover and re-establish their psycho-social functioning within their own environment.

However it is becoming more and more obvious that to be able to help these individuals adequately, specialised psychiatric and other professionals’ knowledge is a necessity. In a number of countries there is a growing tendency to create a distinct psychiatric specialty for people with mental retardation. At the moment in a few European countries the specialty of the Psychiatry of Mental Retardation actually exists. There is also a tendency of specialisation of other professions, like psychology, pedagogy, nursing, and others for a team work in this field.

In spite of these positive and encouraging developments there are still a significant number of obstacles hindering the development of appropriate care. These problems are related not only to an insufficient amount of specific professional knowledge and a lack of appropriate methods, but also to policy related issues and the cultural attitude of the society as well.

In this introductory lecture I would like to critically review some of the recent developments in the assessment, diagnosis, and treatment of psychiatric disorders in this population. In addition I would like to discuss some of the current issues regarding the organisation of mental health care, and also the developments in scientific research and the future perspective of the care as well.

Assessment and Diagnostics

From the 1960s, when a new era in the development of mental health care for people with mental retardation began, to the present, two distinct periods of care may be distinguished: the first period dating from the 60s to 90s, may be characterised as being a period in which difficulties in establishing psychiatric diagnosis were encountered, and the second period dating from 90s up until now, as the period of reflecting upon the significance or the meaning of psychiatric diagnosis in the broader context of the whole existence of a person with mental retardation.

During the first period, the professionals were worried about two main problems:

a)how to distinguish particular behaviours from symptoms of psychiatric disorders in these persons

b)how to apply existing diagnostic and statistical system like DSM and ICD in this population.

The first problems led to the introduction of new terms for the maladaptive behaviours, in particular among people with low levels of mental retardation. Frank Menolascino (Ruedrich & Menolascino, 1984) introduced the term “primitive behaviour” for maladaptive behaviours exhibited by these persons. Later on the term “challenging behaviour” was used. Some authors spoke of personality traits. These behaviours were not seen as pathological and were not considered to be symptoms of psychiatric disorders.

The second problem concerned the striking differences in symptoms between mentally retarded and non-retarded persons with the same psychiatric disorder. Initially it was thought that the differences were to be found only among individuals with a severe and profound level of retardation, but later on, the investigators in this field (Glick & Zigler 1995) found that also moderately and even mildly retarded individuals may have a significantly different symptomatology, for example more externalising of psychiatric disorders, more often hallucinations, less delusions etc..

These findings were serious obstacles for use of DSM and ICD diagnostic criteria in these individuals. More and more practitioners in this field were discontent with these diagnostic systems and looked for alternative solutions. Sovner (Sovner & Hurley, 1990) tried to modify DSM criteria for use in persons with mental retardation and developed equivalent criteria. Other investigators like Matson and Reiss developed scales for psychiatric diagnostic in this population.

Sturmey (1999) summarised by categorising these different approaches into three groups: rational approach (using DSM and ICD systems and the criteria equivalents), empirical approach (using data from the assessment and individual observation and subjecting them to statistical analysis), and alternative approaches like functional analysis of the symptoms. Additionally, some other approaches may be mentioned like developmental, neuro-behavioural, and genetic-behavioural

During the 90s an important contribution was made to the development of the diagnostics of these individuals by means of a link being made between genetic disorders and behavioural patterns, the so called ”Behavioural Phenotypes.” Also, a connection between the Behavioural Phenotypes and particular sorts of psycho-pathology was presumed. These discoveries have given a new impulse to the biological approach to the psychiatric disorders of these individuals. However, as is relatively often the case with new discoveries, some psychiatrists were convinced that genetic and other biological aberrations were the key for understanding of all psychiatric disorders in this population. This simple thinking has resulted in increase of use of medicaments in some professionals and in a therapeutic defeatism in some others.

Recently a group of colleagues from the U.K. under the leading of Sally-Ann Cooper proposed special criteria for psychiatric diagnostics among people with mental retardation called DC-LD (Royal College of Psychiatrists, 2001), which refers to the: Diagnostic Criteria for Psychiatric Disorders for use with Adults with Learning Disabilities. Also new and more sophisticated assessment instruments like PAS-ADD were developed (Moss et al., 1993).

At this congress one additional attempt will be made by the professionals to ameliorate the assessment and diagnostic. The Consensus Practice Guidelines for Assessment and Diagnosis in Adults with Intellectual Disabilities will be presented. On this book have worked Shoumitro Deb, Tim Matthews, Geraldine Holt, and Nick Bouras ( Deb, Matthews, Holt, & Bouras, 2001), supported by an international panel of professionals. This Consensus Guidelines is sponsored by the E. A. MHMR and will be offered to all participants of the Congress.

In the second period, after 1990s, it must be said that knowledge of assessment and diagnostic has been accumulated and that currently establishing a diagnosis within this population should no longer be a serious problem for the experienced professional.

However, the problem of what the diagnosis means still remains. This concerns as well professionals as the individuals with mental retardation and their social surroundings. Concerning a proper understanding of the meaning of the diagnosis by the professionals, the question was how to understand the processes which have led to the diagnosis. The professionals became more and more aware that in order to create an appropriate help strategy it was necessary to have an insight in the pathogenesis as well as in the patient’s subjective inner experiences. This was necessary for a proper interpretation of the person’s mental health needs.

In this sense some authors like Moss (1999), Szymanski (Szymanski et al., 1999), and some others have pointed out the need for a broad problem based approach in assessment, instead of one strictly geared towards the psychiatric diagnosis. The assessment carried out from a broader problem based approach takes not only the patient with his symptoms into consideration, but also his history, his previous experiences, his environment, social interactions, and the quality of life as well.

For the same purpose some authors proposed a so-called Developmental Approach. The protagonists of the developmental approach like Cicchetti (Cicchetti & Toth 1995), Izard (Izard & Harris, 1995) , Burack (Burack, Root, & 1996), Szymanski (Szymanski et al., 1999), and myself (Dosen, 1993) focus on the specifics of the development of a mentally retarded person, assuming that developmental aspects may play an important role in onset of the psychopathology. This approach is called by some professionals developmental psychopathology, and by the others developmental psychiatry. The basic assumption is that the mentally retarded children, like non-retarded children, during their psychosocial development develop adaptive as well as maladaptive behavioural patterns. These maladaptive patterns may play an important role in onset of unfavourable social interactions and may cause problematic behaviour as well as psychiatric disorders. However an important question which may be asked here is why and how do maladaptive patterns arise?

Recent studies from the neuro-science offer some explanation, by pointing out the reciprocal influences of genes and environmental circumstances which may lead to a child being more or less at risk of having disturbances of particular functions.

The concept of mutual influences of genetic and environmental features and disturbed functions has recently been supported by, among others, Dykens and Hodapp (1999), who emphasise that even in persons with genetic aberrations like Prader-Willi syndrome, an early psychosocial intervention may generate changes in eating behaviour and prevent obesity.

The current insights in the effect of early intervention on forming of behavioural patterns speak undoubtedly of a plasticity of behaviour patterns and of possibility of influencing behaviour patterns on particular stages of emotional development. For some authors this is the reason for introduction of the developmental aspect as a fourth dimension in the current three dimensions (bio-psycho-social) concept of psychopathology for the general population.

It would appear from the aforementioned that the assessment and diagnostics of individuals with mental retardation have partially been freed from the ballast inherited from the general psychiatry and are now paving their own road.

For a proper understanding of the diagnosis by the patient and his surroundings, an adequate explanation of the meaning of the assessment findings and the used terminology in the diagnosis is necessary. For this purpose we have developed a model of so called integrative diagnosis (Dosen, 2000) which will be presented on one of the Congress symposia.

The integrative diagnosis consists of four parts: psychiatric diagnosis in usual terminology, onset mechanism, bio-psycho-social and developmental aspects, and treatment strategy.

How the development of the assessment and diagnostic of this population will proceed in the future is, in my opinion, dependent upon, on the one hand, new developments and possible conceptual changes within the general psychiatry, and on the other hand, on research on the basic aspects of psycho-social life of people with mental retardation. These statements merit further explanation.

Currently remarkable movements are being made in the general psychiatry and in the near future they may lead to important conceptual conversions. To a certain extent these changes are the result of the recent advances that have taken place in neuro-science and molecular biology. But they are also result of the discontent felt by practitioners regarding the prevailing psychiatric conceptualisations and the official diagnostic systems in use now. For many psychiatrists the current disease model is becoming obsolete and cannot provide satisfying answers to all the relevant questions that arise from day–to–day practice. The model currently being used is one containing discrete diagnostic entities with a particular pathophysiology and predictable phenomenology, course and outcome . This model dates from the days of Kahlbaum and Kraepelin at the end of the 19th century. Current phenomenological descriptive diagnostic and statistical systems represented by the DSM and ICD are based on this model. Aside from the important merits they deserve for contributing to the development of present-day psychiatry, it must, nevertheless, be said that these systems form an obstruction to the further developments of psychiatry. One of important reproaches is negligence in acknowledging the interactions between biological material and psycho-social and developmental aspects.

Authors like van Praag (2000), assert that it is diagnostically more fruitful to focus on psychological dysfunctions than on pathological symptoms. They are also of the opinion that, in diagnostics, more attention should be paid to the pathogenesis and disturbed personality structures of the patient.

In this new concept the psychiatric disorder is considered to be a behavioural reaction to harmful intrinsic and extrinsic stimuli, the course and outcome of which are largely unpredictable. By adhering to this standpoint the authors are reverting to the view of Karl Jaspers, who advocated a holistic approach and saw mental disease as being a pathological process, rather than an unchangeable entity. One also recognises here the views of Adolf Meyer and later developmental psychiatrists who considered psychiatric conditions to be basically maladaptive reaction patterns to adverse life experiences.

In my opinion such conceptual psychiatric thinking creates more room for understanding the disorders and psychiatric diagnostics of people with mental retardation.

With regard to research on basic aspects of psycho-social life of persons with mental retardation, it must be emphasised that most of the knowledge acquired so far has been derived from investigations of the development of nonretarded subjects. In fact, our knowledge of the development of the various psychosocial aspects which compose the personality of individuals with mental retardation is scanty. Investigations have been predominantly directed towards cognitive aspects. Until recently the emotional aspects have been merely recognised in this population. We also know too little about what may be considered to be normal behavioural reactions under particular circumstances in persons at different developmental levels and with different biological aberrances. That is the reason why challenging behaviour is often not understood properly by the professionals. There is undoubtedly much ambiguity about how professionals should view this phenomenon, is it a disorder which deserves special treatment, or traits of an underdeveloped personality, or just a normal reaction given by an individual at a particular developmental level under particular circumstances.

It is surprising that when the professionals in this field speak of challenging behaviour, they usually do not relate these phenomena to the personality forming of the persons in question. It is also surprising that some investigators refer to the personality disorders in this population, while so far no investigations concerning personality development of persons with mental retardation have been carried out.

In my opinion investigations into this realm will essentially influence the progress and development of the psychiatric assessment and diagnostics of this population.

Treatment

The first psychotherapeutic treatment efforts to aid persons with mental retardation were probably undertaken by a French doctor, Dr. Itard, at the beginning of the 19th century. In his treatment of ”wild boy” Victor, Itard combined cognitive, affective, and behavioural strategies. After a long run of therapeutic nihilism during the 2nd half of the 19th and 1st half of the 20th century, therapists discovered again that these individuals can be treated successfully. Currently the professionals are of the opinion that the principles of psychiatric treatment are the same as for persons without mental retardation, but that modification of the techniques may be necessary in accordance with the individual patient’s developmental level and communication skills.

Besides medicamental and behavioral therapies which have been used already for a long time, currently are being applied psychodynamic, cognitive ,client-centred, rational-emotional, systemic therapy, and other sorts therapy. Recently a handbook of treatment in persons with mental retardation was published by APP (edited by Dosen and Day, 2001) in which all sorts of therapies are described. The current problem encountered in treatment is not a lack of treatment methods, but rather a matter of the proper indication of the type of therapy, as well as proper planning and synthesising of the treatment modalities of various disciplines within a holistic treatment approach.

Concerning the indication for the type of therapy, it should be stressed that there is much criticism of an exaggerated use of psychopharmaca. Various investigators found the frequency of prescription to be as high as 30 to 50% of the cases. Also, in children with mental retardation psychotropic medication is being surprisingly often prescribed, even in 20 to 30 % of the cases. It is most remarkable that medication is very often prescribed without establishing a psychiatric diagnosis, mainly for solving behavioural problems, or simply just to combat the phenomenon of mental retardation, especially when this condition is connected with the PDD.

Another precarious issue is that the medication is often prescribed as an isolated therapy, without it being combined with other forms of treatment.

With regard to other forms of treatment, the criticism is often expressed to the solitary application of particular therapies, unclear indications, long duration, and lack of evaluation and follow-up.

In our practice we apply a multidisciplinary and multidimensional approach based on an integrative diagnosis. This approach is called ”Integrative Treatment ” (Day & Dosen, 2001) and it encompasses three areas: biological, psychological, and social. If necessary, simultaneous treatment may take place in all three areas. A combination of different therapies previously mentioned and a pedagogical approach is to be favoured. Other authors speak of multimodal treatment and mean a similar approach.

Organisation of mental health care

As was mentioned, the mental health care for people with mental retardation is at different developmental levels in various European countries. There are countries with clearly recognisable care, like the U.K., but there are also countries in which this care does not exists at all yet. And in between the two poles in this continuum there are countries in which workers in the field of mental retardation make efforts to offer appropriate special help to these individuals, but not within a concrete care structure .

It is obvious that, in comparison to the mental health care of the general population, the care of mentally retarded individuals is in arrears. Various reasons for the status of this situation may be identified. In my opinion two most important obstacles are: a) the cultural attitude of the professionals working in the care and the attitude of the social environment, and b) the lack of an effectual care policy.

 Concerning the cultural attitude of the professionals, according to my experiences, in many European countries the mental health problems in persons with m.r. have been viewed as exclusively medical (psychiatric) problem. Other disciplines are marginally or not at all involved in the assessment and treatment. The consequence of this is an absence of the multidisciplinary team work. Also, a serious problem is a lack of inclusion of the parents and the social surroundings of the patient in the professional help.

Regarding the lack of an efficient care policy, in my opinion, a serious problem is a lack of inclusion of the mental health care of people with m.r. in existing general care systems, that are general m.r. care and general m.h. care. In many countries problems of mental health in these individuals are approached ad hoc, without particular planning and strategy.

Recently professionals from some of European countries in which mental health care is more developed have become engaged in projects geared towards developing and implementing care in other countries. There is the BIOMED-MEROP project, in which professionals from the U.K., Ireland, Austria, Greece, and Spain co-operated with one other. The participants have investigated current situation in their own countries, they have compared the findings with each other and looked for possibilities of amelioration of the care on the European level.

Another project is MATRA project, in which have co-operated professionals from Netherlands and Croatia on supporting of development of care for this population in Croatia. This project is an example of help to the European countries in transition. More about these projects you can hear at a symposium during the Congress.

Experience teaches us that this type of international co-operation is a good way of supporting the developments in countries in which arrears in care are still present.

Future developments

Concerning the future developments, one and the other is already discussed. I would like to stress once again that, thanks to the contributions from neuroscience and molecular biology during the past decade, huge steps forwards have been taken in understanding psychic processes and gene–environment interactions

What may this recent scientific development mean for the mental health care in persons with mental retardation? At the current stage of knowledge I expect that the symptomatology will be less interesting for researchers as a subject of investigations. In my opinion the scientists will be more engaged in searching for appropriate methods and ways of better understanding the basic socio-emotional needs of these individuals and how to get more insight in their inner experiencing world. In pursuing these efforts, the developmental approach is promising. Looking at the current situation in science I expect in the near future an increase of interest of practitioners in this approach .

Speaking in terms of developmental approach, it is remarkable that child psychiatrists are relatively seldomly involved in working with children with mental retardation, particularly with children on very low developmental levels. I have often wondered why is it so? Is it possible that the professionals are not aware enough that also these children may get mentally ill and that mental health disorders of adults with m.r. are very often rooted in the childhood (according to some investigators in 70% of the cases)?

This situation could be compared with that 50 years ago, when the professionals thought that children could not suffer on psychiatric disorders. The consequence was that the psychiatry of that time was marginally interested in children. There is no doubt any more that, in order to generate the appropriate mental health care for people with mental retardation, the professionals should be involved very early in their work with children with mental retardation and with their parents as well. In my opinion not only children for whom behaviour and psychiatric disorder have been established should be assessed, but all children with mental retardation need early assessment. The assessment should be performed by a team of specialised workers from different professional disciplines who collaborate within a regional mental health service. Such service would serve for all ages and all levels of people with mental retardation. The professionals working in these services could therapeutically intervene in the cases in which disorders are established and should attend to the provision of the guidance and aftercare. The service would lean towards the general care of people with mental retardation, on the one hand, and on the other towards the general care for mental health.

While the current care for mental health is predominantly directed towards treatment of disorders, in the future the care should be more directed towards adequate stimulation of healthy development and prevention of disorders. Rehabilitation and adequate aftercare should also receive more attention of the professionals. The European Association for Mental Health in Mental Retardation would be more than happy to give international support to colleagues from every country who intend to walk this way.

References

Burack, J. A., Root, R., & Shulman, C. (1996). The developmental approach to mental retardation. Mental Retardation, 5, 781-796

Cicchetti, D. & Toth D. L. (1995). A developmental psychopathology perspective in child abuse and neglect. Journal of the American Academy of Child & Adolescent Psychiatry, 34, 541-564

Day, K. & Dosen, A. (2001). Integrative treatment. In A. Dosen & K. Day (Eds.), Treating psychiatric illness and behavior disorders in children and adults with mental retardation (pp. 519-528). Washington, DC: American Psychiatric Press.

Deb, S., Matthews T., Holt, G., & Bouras, N. (2001). Practice guidelines for the assessment and diagnosis of mental health problems in adults with intellectual disabilities. London: Pavilion.

Dosen, A. (1993). A developmental-psychiatric approach in the diagnosis of psychiatric disorders of persons with mental retardation. Venray: Nieuw Spraeland.

Dosen, A. (2000): Psychiatric and behaviour disorders among mentally retarded adults. In M. G. Gelder, J. J. Lopez-Ibor, & N. Andreasen (Eds.), New Oxford Textbook of Psychiatry (pp. 1972-1979). London: Oxford Univ. Press.

Dosen, A. & Day, K. (2001). Treating mental illness and behavior disorders in children and adults with mental retardation. Washington, DC: American Psychiatric Press.

Dykens, E. M. & Hodapp, R. M. (1999). Behaviour phenotypes: Towards new understanding of people with developmental disabilities. In N. Bouras (Ed.), Psychiatric and behavioural disorders in developmental disabilities and mental retardation (pp. 96-108). Cambridge: Cambridge Univ. Press.

Glick, M. & Zigler, E. (1995). Developmental differences in the symptomatology of psychiatric inpatients with and without mild mental retardation. American Journal on Mental Retardation, 99, 407-417.

Izard, C. E. & Harris, P. (1995). Emotional development and developmental psychopathology. In D. Cicchetti & D. Cohen, Developmental psychopathology (pp. 467-503). New York: J. Wiley and Sons.

Moss, S. C., Patel, P., Prosser, H., Goldberg, D., Simpson, N., Rowe, S., Lucchino, R. (1993). Psychiatric morbidity in older people with moderate and severe learning disability: Development and reliability of the patient interview (PAS-ADD). British Journal of Psychiatry, 163, 471-480.

Moss, S. C. (1999). Assessment: Conceptual issues. In N. Bouras (Ed.), Psychiatric and behavioural disorders in developmental disabilities and mental retardation (pp. 18-37). Cambridge: Cambridge Univ. Press.

Royal College of Psychiatrists. (2001). DC-LD: Diagnostic criteria for psychiatric disorders for use with adults with learning disabilities. London: Gaskell Press.

Ruedrich, S. & Menolascino, F. J. (1984). Dual diagnosis of mental retardation and mental illness: An overview. In F. Menolascino & J. Stark, Handbook of mental illness in the mentally retarded (pp. 45-82). New York: Plenum Press.

Sovner, R. & Hurley, A. (1990). Assessment tools which facilitate psychiatric evaluation of treatment. Habilitative Mental Healthcare Newsletter, 9, 11.

Sturmey, P. (1999). Classification: Concepts, progress, and future. In N. Bouras (Ed.), Psychiatric and behavioural disorders in developmental disabilities and mental retardation (pp. 3-17). Cambridge: Cambridge Univ. Press.

Szymanski, L., King, B. H., & American Academy of Child & Adolescent Psychiatry Work Group on Quality Issues (1999). Practice parameters for assessment and treatment of children, adolescents, and adults with mental retardation and comorbid mental disorders. Journal of American Academy of Child and Adolescent Psychiatry, 38 (Suppl. 12), 5S-31S.

Van Praag, H. (2000). Nosologomania: A disorder of psychiatry. World Journal of Biological Psychiatry, 1, 151-158.

For further information:

Anton Dosen
Nieuw Spraeland
Wanssumseweg 14 Oostrum
Postbus 5029
5800 GA Venray Netherlands