Dr Hege Saltnes and senior adviser Aase Endresen describe some groundbreaking therapeutic work with a man with congenital deafblindness who was experiencing mental health difficulties.
What is known about congenital deafblindness and mental health? Everything, because the mental health difficulties found in the general population also affect people with deafblindness. Nothing,because almost no research have been done in this field, and psychiatric services for deafblind people are almost non-existent.
We know from experiments that depriving someone of one of their senses means they are more likely to have psychotic experiences. This research, case studies, and clinical experience indicate that being without hearing and seeing makes you more vulnerable to serious mental health problems such as psychosis.
Deafblindness makes the world an unsafe place, with many people experiencing isolation and finding communication extremely difficult. Life itself becomes a stressor. These factors also expose the deafblind person to less serious conditions such as anxiety, obsessive-compulsive disorder, and depression.
The story of `Adam’
We would like to illustrate this with the story of `Adam’- who is in his mid thirties, and has congenital deafblindness and a neurological condition with muscular weakness – although he does not have a definitive diagnosis for this.
He lives in a group home where the regular turnover of staff makes his environment unstable. Partners reaching a reasonable communication competence tend to leave and building trust, knowledge and communication has had many serious set-backs. Still, Adam has had periods where members of staff have been very dedicated and well suited for the challenging work
His mental health
Adam has had an unstable affective condition for a long time, with periods of inactivity followed by periods with high activity, restlessness, lack of sleep and strange behaviour. Sometimes he had “attacks” where he was extremely restless and agitated, twisting his hands, sweating and making noises.
He also had repetitive behaviour - arranging things in patterns, cheeking doors, throwing things and showing self stimulating behaviour. The people around him were worried: Is his behaviour due to his communication difficulties, anxiety or sadness? Or was he becoming psychotic?
His problems were, to a certain extent, considered to be due to his congenital deafblindness. The experts perceived him as a deviant person (`deafblind-retarded’), recognised his anxiety, compulsive behaviour and distress, but did not know how to assess him. In a way, the deafblind diagnosis seemed overshadow his psychiatric and neurological difficulties.
Adam’s language
Adam has an amazing communication history. Until he was 18, he used less than 10 signs, and in his 20´s his language developed step by step, but only with a few partners. As a result of a project in 2004/2005 his language developed even more, and the number of communication partners increased. Even so, he was a selective communicator, probably because of experiences of not being understood.
It took his communication partners persistence and patience before he started answering back to them. As his communication abilities grew, it became clear that he was an individual with ideas, dreams and worries - but that a lack of language had limited his social and intellectual development. “I feel more like a human being when I can communicate” he signed to us.
Today a team of highly dedicated interpreters are specially trained to support his communication needs.
A new diagnosis
Adam was referred to the new National Centre for Hearing Impairment and Mental Health in spring 2007 and new efforts began to find more accurate diagnosis for him, based on his history, medical examinations, a psychiatric interview with him and discussions with staff and his family.
As a result of this he was diagnosed with a mood-disorder in the bipolar spectrum (although we could not be more specific than this). His repetitive behaviour - arranging, checking and controlling - is considered to be part of an obsessive- compulsive disorder.
An obsession is a recurrent and intrusive thought, feeling, idea or sensation. A compulsion is a conscious, standardised, recurring pattern of behaviour, such as counting, checking or avoiding. Obsessions increase someone’s anxiety, whereas carrying out compulsions will reduce this anxiety . When someone resists carrying out a compulsion, their anxiety is increased.
The aims of the behaviours are to prevent or reduce distress, or to prevent some dreaded event or situation from taking place. Having said this, these behaviours are not connected in a realistic way with what they are designed to prevent.
In Adam’s case, his obsessions and compulsions continue because he believes he has carry on with them to prevent an imaginary disaster from taking place.
Working as a team
Each month Dr Saltnes visits Adam for 2 - 3 hours of cognitive therapy using hands-on signing to communicate with him. This is preceded by a discussion with the whole staff team, with another session for consultation, discussion and training together
after the therapeutic session. Sometimes a meeting with his family is included.
An important part of this process was establishing a setting where communication could take place. At first, he rejected Dr Saltnes and he didn’t have the language to communicate his emotions, but he did express that he wanted help. He was also able to say what was important to him in the therapeutic process: for us to be good signers, to be kind but also strict, and to show a genuine interest in him
There needed to be to be a lot of patience and persistence on both sides but eventually this lead to a breakthrough - where Adam was able to express some of his deepest feelings about how he saw himself and his fears for his family.
The therapy offered was an adapted version of cognitive therapy with a lot of emphasis on explaining to Adam about obsessions and compulsions and how he could handle them. He was very relieved to understand that he was not the only one having obsessive-compulsive symptoms and said that he felt much more normal.
In spite of a having very limited language, some of our discussions have been about big human themes: for instance about him being disabled, and about human dignity. He could also express his grief about being `different’.
Most of the therapy sessions have been videotaped and selected parts are used in meetings with the staff.
Ongoing work
Between monthly visits, staff can call Dr Saltnes to discuss important issues. Aase Endresen also has sessions with Adam to support the therapy where they talk about how he is and practice the methods for handling compulsive behaviour. In these sessions staff can also practice communicating with Adam about his thoughts and mental challenges.
What has been achieved?
- Adam’ mood is more stable mood and he has less panic attacks.
- His language is progressing well.
- He and his partners have a shared understanding of, and vocabulary for, emotions, mental stress, anxiety, and compulsive behavior.
- He has developed language and knowledge related to mental health and has a better insight in his own problems.
- He wants help to handle compulsory behavior and obsession and can discuss how the staff can help (be close, hold me, communicate, remind me)
- His medication is based on a clearer diagnosis.
- Adam takes part in the evaluation and regulation of his medication.
- He shows greater self confidence, takes more initiatives, and is more assertive.
Some final reflections
Adam is special, as most people with congenital deafblindness are. Few people with congenital deafblindness have reached his level of communication.
Having said this, perhaps problems with mental health may be preventing other deafblind people from communicating and fulfilling their cognitive potential? If the right help were available how many more could fulfil their potential?
Diagnosing and treating the mental health difficulties of someone with congenital deafblindness is very challenging. Symptoms may look different in a deafblind person than in other patients.
Working together as a dedicated team, psychiatrist, adviser, staff, interpreters, has been very fruitful; we would not have been able to help Adam if we hadn’t worked closely together, been flexible and creative. Very few psychiatrists know enough about deafblindness, and very few consultants or staff have sufficient knowledge about psychiatry – but working together we achieved a great deal.
References:
Bolduc, Daniel, Brissette, Lyne, Lefebre, Gilles, ‘Deafblindness and mental health: better understand to better intervene’, Institut Raymond Dewar, Canada, download from www.reach.ca/text_only/shared_future/eng/bolduc.htm
Brede, Kari Schøll (2008) Let me join your attention, Master, University of Groeningen
Ehrlich, Henriette (2007) The developmental profile as a baseline assessment of an adult who is deafblind, Master, University of Groeningen
Talking Sense, Spring 2007
Dr Hege Saltnes is a senior psychiatrist and head of the unit serving adults at The National Center for Hearing Impairment and Mental Health at Oslo University Hospital, Norway
Aase Aune Endresen is a senior adviser at the Regional Resource centre for Deafblind at Statped Vest in Bergen Norway.
