The best way to deal with challenging behaviour is to stop it – reframe the concept completely and ban the use of the phrase.
This may sound extreme but what we know at the Marbrook Centre is that behaviour in itself is often an expression of emotion or a form of communication. It surprises and saddens me that people working with people with dementia still label behaviour and the person in such negative, pejorative terms.
So what are we referring to? We all have an idea of what constitutes ‘challenging behaviour’. It may be spitting, hitting, shouting, arguing, swearing and my favourites, non-compliance and wandering. To illustrate our approach I am sharing two case studies.
Jan is 63 years old and is loved by all, especially her husband. They still walk hand in hand and look lovingly into each other’s eyes. Jan was diagnosed with young onset dementia when she was 60. She had been referred to us because the staff in the home she was in could not manage her. She was described as aggressive, interfering with other residents and difficult to handle. She would follow staff around when they were giving medication and if they walked quickly to get away she would run after them.
So Jan came to stay with us at the Marbrook Centre. We have lots going on, no routines, a bright environment with freedom to move. Jan had worked as a midwife and what drew her most were the dolls, prams, cribs and baby stuff we have available. Very soon Jan was dressing, holding rocking and caring for the dolls that she referred to as babies. Jan eats while holding a ‘baby’, gets up to tend to them and is moved by their beauty. Jan has lots of nursing equipment available too, so the dolls have their hearts listened to and the results recorded.
She also has an interest in shopping coupons, the sort that can be cut out of the paper. She will sit with someone and tear actual coupons, or just a newspaper into strips. She loves jewellery and make up and can help herself to items that are available on the dresser in the lounge. If she moves things around, that’s OK. She likes to help with household chores and as she has access to the kitchen area she can enjoy being part of domestic life. Jan is cared for by staff who don’t wear uniform and who enjoy being with her.
We believe the behaviour described to us before Jan came to stay with us was not challenging. Rather that the environment she lived in was: challenging to her understanding of the world she lives in, to her sense of herself and to her very essence and soul. Jan still has difficulties coping with the world she finds herself in, but with familiar meaningful things around her and people who can genuinely share her reality and enter her world she feels safer, right and less challenged.
Tom is 62 and was diagnosed with Korsakoff's in his late 50’s. He was described to us as challenging and aggressive. We were told he assaulted staff and deliberately put himself on the floor for attention. He didn't’t speak and made no effort to engage with others.
Tom arrived at Marbrook in the back of a secure ambulance. I looked at this man who had dirty clothes on and looked unkempt and very sad. I asked Tom if he would like to come and have a cup of tea and see if he liked our place. He said very little until he saw his room. He said then that he had never lived anywhere so nice. ‘I like it’.
We had a problem though. We couldn't find anything Tom liked doing. We tried and tried but he spent hours a day on his bed in silence. His brother told us that Tom had always been like that. He had lived with his mum until she died and although he worked, afterwards he would go to his room and lie on his bed. So, although it may appear we were not able to get him to do anything, it was up to us to enter his world and not try and enthusiastically drag him into ours.
Tom started to keep his room clean, make himself a cup of tea and do his washing. There was one member of staff who clicked with Tom. She is not patronising but is genuinely interested in him as a person. Tom would go for a walk with her and talk while they walked. Tom shared his dream with her; to have his own place to live and work again. So when he was finding it difficult to look after himself or be with others, she used this dream to support him.
He was not labeled non-compliant, aggressive or attention seeking. We looked for what would give him a reason to keep going. What did he want? A job. So he was asked if he would like to work with the support services to help keep the grounds tidy. He said he would. So Tom had a polo shirt the same as the others working in the grounds. He had a badge, the same as the others. He worked alongside, as part of the team. Once the work was completed, Tom went back to his room for a lie down. Ten minutes later he told staff he was going downstairs to tend to the gardens. And he did. Later that day he wrote a letter to the Job Centre and posted it. Tom has let us into his world and now all we have to do is take the cue from him.
Let's stop using the phrase challenging behaviour and look for meaning in the persons’ world instead.
- Sue Hahn, General Manager & Head of Clinical Care at the Marbrook Centre, Cambridgeshire.
The Marbrook Centre young onset dementia service has been designed using Stirling University’s best practice to be as dementia friendly and enabling as possible. Each of the 27 bedrooms has easy access to three domestic kitchens, four lounges and a cafe, as well as a cinema room, hair salon and sensory gardens. The Marbrook ethos of dementia care is based on commitment to supporting the person living with dementia (and their family) to continue living in a way that is really meaningful to them. For more information about the Marbrook Centre's dementia care service, visit their website, you can \also follow them on Twitter @MarbrookRehab
Photo - Sue with a Marbrook resident and Hattie, Marbrook's pat dog.