Approaches to care work with people with intellectual disabilities and mental disorders

One finds mental disorders in a higher proportion of people with intellectual disabilities than in the general population. Studies show that up to 30 to 50% of all people with intellectual disabilities also have mental disorders. This may be due to their reduced cognitive abilities and therefore also an increased vulnerability to environmental demands. Dual diagnoses means that it can be difficult to discover that a person with intellectual disabilities also have a mental disorder as it can be difficult to separates the symptoms of the mental disorder from the behavior resulting from intellectual impairments. It also means that the therapeutic treatment is hampered by the fact that people with intellectual disabilities don’t have the same opportunities to reflect upon their condition, as other people in a  therapeutic situation.

We will here deal with two directions of mental disorders that many people with intellectual disabilities have and we will present some approaches to treatment and support that residential care workers can apply. The two directions are, respectively, personality disorders, focusing on borderline issues and OCD, ie. Obsessive-Compulsive Disorder.

When working with people with intellectual disabilities and mental disorder a customized caring  approach and treatment plays a very important role. It’s the residential social workers that on the  daily basis helps the people with disabilities in all parts of their life situation, that also have to help them to live with and create development in relation to the person’s mental disorder. That means that the care worker also in relation to mental health will be a helper. It’s therefore very important that the care working staff has knowledge about mental disorders and knows how to help the person.
Of major importance regarding being able to help the person with a dual diagnosis is to sort out what the persons mental preconditions are, and what mental disorders he has beyond his mental impairments. Based on this the care worker can get advice on which caring approach would be appropriate.

When you as a care worker or residential social worker faces a person whose actions are difficult to understand, one might be inclined to take intents and concepts from his own “normal” world and put into the world of the person with mental disabilities. One can for example have a conception of a person as stingy, because he really likes to eat cake when someone has brought a cake, but you would never find him buying something to share within his community. He might also be perceived as provocative in his behavior. Both characteristics, which is here applied to a person, requires a quite developed mental capacity, that most likely this person is not equipped with. It can also be that this person is seen as having a behavior that transcends other peoples social boundaries, but the perception of the person’s behavior is also here based on a perception that more comes from the care workers own world than from the world of the person with mental disabilities. If the care worker’s understanding of the person were consistent with the fact that he for instance has a developmental age corresponding to a 2 year-old child, it would be less likely that the care worker to the same degree would perceive the persons behavior as boundary crossing, stingy and provocative. It is thus important that the care workers always tries to understand the person and adjust his caring and helping approach to the client’s needs and preconditions.

The various developmental and psychological problems of people with mental disabilities always unfolds in interaction with their personality and will therefore have different expressions. Therefore the care working approach cannot be determined on the basis of a diagnosis or developmental age alone, but must be adapted to the individual.
Many people with mental disabilities have an uneven developmental profile. This means that they easily can have a high cognitive level of development, while they have great difficulties on the emotional and interpersonal level. Or the contrary. In the first case this often leads to problems that are experienced transgressing the caretakers personal boundaries, but in fact they are solely an expression of the persons lack of empathic ability and therefore they are not meant to be so intentionally. The reason why people with mental disabilities can have emotional and empathic problems can be, that either they don’t have the biological basis for empathy which is the case for instance in autism, or it may be that they haven’t learned it because of lack of stimulation during childhood. In case of lack stimulation, the empathetic and emotional abilities can be supported and stimulated by the care working staff, for instance by the staff verbalizing their own and the persons feelings in different situations.

For the second group that does not have the biological capacity  to learn and feel empathy and emotions, it doesn’t make sense to try to teach them. Here caretakers instead have to try to provide them with other strategies to deal with other people.

This is an example of that the same problem - problems with empathy - have different causes and background, and therefore there has to be different approaches to deal with it.
 

Attachment disorders and borderline similar personality types
The relation to other people is a significant and very important part of human life. We live by and through relationships. It’s through interaction with other people through our childhood that we learn everything that is essential for a good life: language, emotion, understanding of others, understanding of ourselves, culture, etc. A successful attachment to the parents during childhood is a significant prerequisite to later in life to be able to establish healthy relationships with other people.
Many people with intellectual disabilities have different kinds of attachment disorders. Previously, many children with disabilities were placed in institutions from they were quite young, and many can be described as early emotionally impaired. Others have been overprotected by their parents because of their disability. This can cause a risk of developing borderline issues, especially  if the  love for the child is not given to the child on the child’s terms, or parent and child otherwise have had a problematic separation process, where the child hasn’t had the possibility to established its own ego structure. This means that the person may have trouble understanding themselves as separate from others and they will therefore continue to try to form symbiotic relationships, which can easily become too dense and transgressing for other people. It is estimated that approximately 10% of all people with intellectual disabilities have borderline similar issues.

What is important to understand when you meet an individual with borderline similar problems is that it is in the relationship with other people that they have the experience of existing. Therefore they seek this symbiotic relationship. They always have an experience of disintegrating and disappearing if they are not engaged in a relationship. In people with mental disabilities this can be expressed by the constant repeats of a question in order to try to continue to be in the relationship with the other. When staff has received the same question 50 times, it may be hard not to show it and become irritated. More sophisticated methods to avoid the experience of disintegrating might be to try to move others emotionally. If the person with borderline issues can move the other emotionally, she gets a sense of being herself. You often see that the borderline type has a special ability to find the vulnerabilities of others which they can use to provoke an emotional reaction.

Some staff members feel that they just attract all the borderline types. With other staff members the borderline attacks just bounce off. It is often the dedicated employees who want to do well and who opens up for the needs and feelings of others that attracts the borderline type (and many others!). They are interesting to the borderline type, because the borderline type in them finds the response they seek. If it’s always the same one or few employees that takes all the “attacks”, it can be extremely stressful. It is therefore important to understand what kind of needs attacks and the annoying questioning are expressing. If the employee understands that it’s just primitive strategies to survive and not disappear and disintegrate, that motivates the attacks and the questioning, one can better relate to it, not take it personally, and, very importantly, meet the needs of the borderline type professionally. Also, it is important that it’s not always the same person that takes on the receiving role, but that some of the other employees also takes on this role or function. Otherwise, the open and dedicated employees wears out and can only stay in this work for a very short time. The solution is not that all employees shields themselves against the borderline type, as this then would imply that this person has to find other ways to meet his  needs of moving others emotionally in order to fell his own being. He then could be pushed over to another target that very well might be a one of his vulnerable cohabitants. Then the borderline type will really have succeeded in creating motion and emotion when staff has to separate and resolve the conflict. The borderline type lives on premise, "I move the other, therefore I am." It is unimportant if the response is positive or negative compared to the survival strategy of the borderline type.

Borderline cannot be cured, but can be mitigated through environmental therapy, the social caring  approach and by the staff making themselves available to the needs of borderline type. If the staff  has knowledge about what kind of needs the person have and why, they can better make themselves available for the person in a positive and professional way without being affected personally.

OCD
OCD are resulting in either obsessions, compulsions, or both. Essential criteria for the OCD is that one’s actions and thoughts are acknowledged as one's own (as opposed to eg schizophrenia) and that they are experienced as uncomfortable and compulsive (opposite pervasion). If the compulsions are not performed, the person with OCD fears the consequences. In the general population about 2 to 3 % will develop OCD through a lifetime, for mentally disabled people some studies have shown that 3 to 5% has OCD, but this could be grossly under diagnosed. Some believe that there are up to 40 % of people with disabilities who suffer from some degree of OCD.

It can be difficult to determine if people with mental disability have OCD, because the compulsions can be difficult to distinguish from the stereotype acts you see with many people with disabilities. Similarly, it can be difficult to determine whether the compulsions are associated with the developmental age that the person with mental disabilities have, and hence is normal. Up to 2 ½ years of age ritualized behavior is a natural part of child's behavior, as a way for the child to create safety in its world. If the main purpose of the rituals for the person with mental disabilities is to provide clarity, structure and peace in an often confusing world it is not OCD.

OCD is an anxiety disorder. The compulsive behaviors are rituals created to deal with an irrational fear and abnormal preoccupation with worries and thoughts. Rituals relieves the short-term anxiety, but in the longer term rituals increases anxiety. It will soon become a negative self-reinforcing spiral. When patients see that the things they feared did not happen when they perform the ritual, then they are confirmed that the ritual is necessary for them, and it becomes an compulsion.

Nowadays OCD is regarded as a neuropsychiatric disorder in which is seen a serotonin imbalance. Some people have a hereditary predisposition to develop OCD and this can be triggered by psychological and social stress. It is often one or more events through childhood, that promotes the OCD, which then develops and worsens over time. You often see up to 7 ½ years from the first signs of OCD, before it is diagnosed.

One reason that there is such a high incidence of OCD in people with mental disabilities may be that they have a greater vulnerability to stress because of their reduced cognitive abilities.

There are several symptom clusters associated with OCD. The most common is the fear of infection associated with washing rituals, thoughts of harming associated with checking and controlling such things as doors and stoves, and obsessions of symmetry associated with sorting, counting and repeating.

People with mental disabilities are often unable to provide an overview about the world and often they find that they are taken by surprise by what happens around them. They often have difficulties to express themselves verbally and hence difficulties in describing their anxiety. Therefore they often use rituals, order and obsessive behavior as stress and anxiety-reducing activity and as an expression of their anxiety. Therefore, it may be difficult to distinguish the anxiety-reducing behavior from the compulsive behavior of OCD. A behavior whose function is to provide reassurance may be necessary. Here, the social caring approach would be to help to create an environment that reduces the element that produce anxiety. Obsessive behavior is as already mentioned a vicious circle that just creates more anxiety, therefore there are good reasons to break the cycle and reduce the compulsive behavior.

Treatment of OCD
The Norwegian psychologist Jarle Eknes is a specialist in OCD and mental disabilities and he has many years of experience in effective treatment of OCD in people with disabilities. He says that many practitioners consider it as difficult to treat people with mental disabilities because of their reduced cognitive functioning. That means that many people with learning disabilities and OCD don’t receive the treatment they might need to improve their quality of life. In fact he claims that there is not much difference in treatment between people with normal intelligence and OCD and people with disabilities and OCD. The difference is of course less the lighter the mental disabilities are.

OCD is traditionally treated by a combination of medication and cognitive behavioral therapy. The medication is often necessary to mitigate anxiety in order to "open the window" nessesary to initiate a therapeutic treatment at all. The medical treatment is an anti-depressive medication, with a dose that is 2-3 times higher than for the treatment of depression. Symptom relief is seen after 8 -12 weeks.

Since the treatment of OCD largely concerns to break the vicious circle, an effective treatment in relation to OCD is exposure and response hindrance. Under controlled circumstances the patient is  exposed to elements  in relation to what he is afraid of and to anxiety-provoking situations. Then the patient is supported in preventing doing the things he normally does to insure against accidents and to alleviate anxiety. The vicious spiral can be broken when the patient sees that what he fears does not happen, although he fails to perform the ritual.

If the patient has OCD in relation to infections that triggers excessive cleanliness and cleaning, a training can begin by defining the various things that the patient finds impure and contagious and then rate them on a scale from 1 to 10 according to how anxiety-provoking and dirty they are for this person. For a  start the patient are exposed to the less anxiety-provoking stuff. Then the patient is supported and encouraged to refrain from washing and cleaning for a period, for instance for half hour and eventually perhaps for the rest of the day. Gradually, the patient is exposed to the impure and anxiety-provoking stuff that is higher on the scale.

It’s important that treatment is in accordance with the patient. If the patient is motivated to work with his compulsions, the success rate increases. People with mental disablilities often have poor linguistic and cognitive abilities and this obviously have influence on how they can be motivated and engaged in training, but with alternative and customized approaches it can succeed.

It is also important that the exercises are planned and structured, and that the patient knows what will happen. The purpose of the exposure exercise is that the patient learns how to cope with anxiety, how to be in the anxiety and to find out that nothing happens when the rituals are not performed. Therefore, fear should not be suppressed during the exercises. The therapist should continually assess the anxiety level during the exercises and not push the patient too hard. The patient must be able to stop the exposure and perform his rituals if he cannot stand it, but also be supported and praised for enduring the exposure and the hindrance. When patients experience participation and control over the exercises they often tolerate greater challenges.

For the exercises to have an effect, they must be repeated often. It therefore requires that the patient performs home exercises between séances of therapy. Compared to other people with OCD the caregivers and educational staff which soround the patient, will play a significant role in the treatment of people with mental disabilities. Few people with mental disabilities will be able to conduct home exercises themselves. It will therefore be necessary to establish a training team around the patient, who can help with home exercises. Typically, a training team consisting of a head coach and three assistant coaches. The head coach is responsible for training and help coaches are responsible to help the patient exercise on a daily basis.

With people with disabilities one would often make more use of games and activities in the motivation and training. It is important that training is not perceived as a punishment, but that the training team along with the patient talks about the compulsive action as an opponent, that they  will help the patient to fight. This requires that the patient has good and safe relationships with training team. A training might include 5 training sessions with the head coach and at least 3 weekly home training with assistant coaches. After 5 weeks, one would typically see an improvement, if the training works. If there is no improvement after 10 weeks, the treatment will probably not come to work. If it works they should continue the exercises until the anxious and compulsive behaviors are significantly reduced. After that one should continue with a maintenance program.

The article is based on presentations by psychologists Peter Rodney and Eva Kirketerp about mental disabilities and mental health, as well as a special issue of VIPU Knowledge of OCD (No. 4, 2008).