Dementia Gateway: Difficult situations

Case study: Why oh why? Creative brainstorming solutions to toilet problems

This case study comes from a home care service that specialises in working with people with dementia. Although fictionalised, it is based on a collection of true stories.

Background

Bernard had Alzheimer's disease and lived at home with his wife, Agnes. He received daily home care support and attended a day centre twice a week. Recently, Agnes had been struggling to cope with being Bernard's carer. There was one problem above all others that was driving her to despair: at least once, and often two or three times every night, Bernard would rise from bed, stand in the corner of the bedroom and empty his bladder.

Agnes usually awoke when Bernard got up in the night. As a result she was exhausted: not only was she waking frequently, but she also found it hard to get to sleep when listening out for Bernard getting out of bed. Even if she was awake, Agnes rarely managed to be able to do anything to stop Bernard from urinating on the floor. Shouting for him to stop had no effect (Bernard was quite deaf anyway). Putting the bedside light on made no difference. With her arthritic joints, Agnes couldn't manage to get out of bed and reach him in time to stop him. Wearing an incontinence pad made no difference – Bernard simply removed it before urinating.

Even though Bernard showed no other indications of this, Agnes had become convinced that Bernard was acting out of spite.

…toileting difficulties are by no means straightforward problems to understand.
Stokes, G. (2000)

Read the full case study:

Understanding the situation – 1. Research and development findings Open

According to Stokes, 'toileting difficulties are by no means straightforward problems to understand'. He suggests that through observation and creative thinking – or 'creative brainstorming' as he calls it – we can find a range of possible explanations for any behaviour that is challenging. This technique, as described by Graham Stokes, involves working as a team to generate as many explanations as possible for the person's behaviour and investigating the likelihood of each.
Understanding the situation – 2. Views collected from key people Open

Bernard's wife, Agnes, desperately needed his inappropriate urination to stop. She was fast reaching a point where she could no longer care for him at home, so – although he didn't know it – Bernard himself held a major stake in a solution being found. Agnes's daughter Linda (Bernard's step-daughter) was also involved and concerned. The three home care workers from the specialist dementia home care support team, together with the team co-ordinator, wanted to help.

Bernard was not able to express a view. His verbal communication was extremely limited. On the few occasions when Agnes had tried to talk to him about his inappropriate urination, he had shaken his head and seemed to have a look of disbelief that it was happening. Agnes was very pleased to have the support of the home care workers to try to find a solution. She was grateful that her concerns were being taken seriously, although she still believed that Bernard was being spiteful to her.
Actions Open
Since Bernard's verbal communication was extremely limited, he wasn't able to say why he was urinating on the floor at night. The homecare team co-ordinator suggested the team use Stokes' approach – creative brainstorming – to identify possible reasons for Bernard's inappropriate urination.

The method of creative brainstorming is collaborative and dynamic. It created discussion and laughter and a real sense of teamwork among the care team and Bernard's wife and step-daughter (the homecare team involved Agnes and Linda in the exercise).

Between them all, they managed to generate 41 possible reasons for Bernard's behaviour. These possible reasons included:
- loss of bladder control
- being spiteful
- visual impairment
- can't find the toilet
- frightened of something in the bathroom
- not recognising own reflection in bathroom mirror and thinking someone is in there
- can't be bothered to go as far as the toilet
- perception error, that is, he was mistaking the floor for a toilet
- habit from the past.
Some of the possible reasons could be eliminated quickly because there was already evidence to contradict them – for example, Bernard's bladder control during the day was absolutely fine. A number of possibilities remained and, one by one, these were investigated. The homecare team considered Agnes's view that Bernard was being spiteful, but could find no evidence of this being the case. In fact, Bernard was very loving towards his wife. An optician assessed Bernard's vision and found no new problems.

The homecare team coordinator examined the bathroom and removed some items that could be triggering fear or confusion were removed (for example, the mirror) to see if this made a difference. Agnes put up a large sign, with a picture of a toilet and an arrow, on the wall of the bedroom to tackle the possibility that Bernard needed help to find the toilet at night when he was, perhaps, more disorientated than during the day. But neither of these changes made any difference to Bernard's night-time urination habits. (For more on this, see 'The Environment' section, in particular the feature on 'Toilets and bathrooms'.)

When the team began thinking more about Bernard's past lifestyle, they got into some interesting discussions. Bernard had worked as a forester. During his working day, it was likely that he urinated in a secluded area among the trees. The home carers wondered if a memory of this past habit was, for some reason, returning to Bernard at night. With this in mind, they considered Bernard's bedroom environment. The walls were a beige colour; the curtains covering the large bay window were dark green. The wardrobe and other bedroom furniture were dark brown wood. Could it be that Bernard, upon waking at night, found himself in the dark green and brown familiar environment of the forest where he had worked for so many years?

Everyone agreed that the best way of investigating this possibility was to alter some of the potentially misleading environmental cues. The easiest thing to do was to put a brighter bulb in the bedside light, since Agnes always woke up anyway when Bernard started getting out of bed, so she could now light the room more effectively. To Agnes's surprise, on a number of occasions over the next week, Bernard got out of bed, looked around the room, and headed straight to the bathroom. But still, sometimes, Bernard urinated in the corner of the bedroom. Encouraged by the success of the bedside light, Agnes agreed to some other changes being made to the bedroom environment. The wardrobe was pushed against the wall, so there was no longer a secluded spot in the corner, and the bedroom curtains were swapped with those from the downstairs lounge – dusty pink in colour.
Results Open

Three key changes were made to Bernard and Agnes's bedroom. A brighter bulb was put in the bedside light, the dark brown wardrobe was pushed against the wall, and the green curtains were replaced with pink ones.

Bernard no longer urinated in his bedroom at night.

Agnes was much happier, and the couple's relationship improved.

Agnes's reports about what Bernard was doing at night were crucial to the process of understanding and solving the problem. In the end, the team's knowledge about Bernard's life experiences was key to coming up with the solution of adapting his bedroom.

The specialist homecare team had used the technique of creative brainstorming previously. This experience helped them be confident and hopeful about using the process to develop solutions.

Bernard's challenging behaviour was caused by an aspect of their life history. Agnes and Linda, on the other hand, were very surprised that Bernard's work emerged as a key contributor to his inappropriate urination.
Advice for others Open

The changes made in Bernard's and Agnes's bedroom became permanent, so it was unlikely that Bernard would ever again think that he was in a forest. This is not to say that other problems did not emerge, as Bernard's dementia progressed. But the important lesson that had been learned from the creative brainstorming exercise was that there is almost always a reason behind a person's actions. So when further difficulties arose in the future, Agnes knew that she had to be a detective and search for an explanation. Creative brainstorming is a simple technique that requires nothing more than imagination, an open mind, and a belief that there's almost always a reason for an individual's challenging behaviour.

The essence of a person-centred understanding of dementia is that we recognise each person is an individual and is affected in different ways both by their neurological impairment and by a range of other factors in their present and past environment. Any type of behaviour that presents difficulty or distress – either for the person with dementia or for those caring for them – urgently needs to be understood. This understanding usually comes through a focus on the individual – their feelings, their needs and their life story. When reasons for a person's behaviour are understood, they can often be addressed and everyone's well-being improves.
Financial implications Open

For the small amount of time that it takes to work as a team and generate a list of possible reasons, creative brainstorming is a highly cost-effective strategy. It's worth noting, though, that sometimes (although not in Bernard's case) there might be cost implications in addressing the reason that is found to underlie a person's behaviour.