Pet hates… we all have them. The BBC have a long running comedy show where celebrities get to nominate items to put in Room 101, to be banished from earth forever. Past suggestions have included maths teachers, DIY, soap stars singing and cheese balls! In 2014 Nurofen Express surveyed 2000 people in the UK and asked them “What’s the most annoying thing about modern life?” Slow wifi, PPI calls, people taking up 2 parking spaces, pot holes and dog dirt left on the pavement were amongst the most common answers given.
We all have things that annoy and irritate us, some are understandable, others completely irrational. Mostly we bite our lip or let off steam by writing to complain, tweeting, moaning to a friend… but what if we were unable? What if our speech had deserted us? What if the area of our brain that helps us control our behaviour and impulses, our frontal lobe, was no longer functioning as well as it should? What if, in addition to not being able to verbally express or control our frustration, we were already living in a state of anxiety? What would it take to tip us over the edge, to cause us to swear, bang a door, push someone away or retreat inside ourselves?
Many people living with dementia talk about having periods where they feel unsure and anxious and are more emotional, and there are sound social and biological reasons why this can be so. The traditional approach to managing frustration, anger or depression for people living with dementia, particularly when their dementia has progressed to the point where they find it hard to understand the world around them, has been to offer medication. Whilst this has a place it is now recognised that non-pharmacological or alternative approaches may be more suitable.
The IDEAS Team (Interventions for Dementia: Education, Assessment & Support) are based in NHS Dumfries and Galloway and provide education and consultation on using these approaches to people working with people living with dementia. The team is multidisciplinary and so we have a specialist nurse, a psychologist, a social worker, an occupational therapist and a speech and language therapist. Our first advice when being asked for help in supporting someone who is showing repeated signs of anger, frustration or depression is to recommend our CEASE model.
The CEASE model helps us to understand why a person might be behaving this way, particularly if they are unable to tell us themselves. Some of the questions it asks are common sense – are they too hot or cold, stiff from sitting, bored, lonely? Experience tells us that the simplest things can be the most annoying and are often overlooked. One of the most common reasons why people with dementia express anger and frustration is undiagnosed or untreated pain and so Comfort is always our first thought. The exhausting effect of even mild pain where endured long term is significant, we lose interest in food, find it hard to sleep, retreat from activities we enjoy and can easily enter into a downward spiral. Evidence shows us that still all too often people living with dementia do not get the pain relief they need.
“Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.” Will Rogers, American Actor
The Environment and lack of Activity can also be big stress causing factors. Our Occupational Therapist is able to advise on environmental improvements, suggesting helpful resources to make surroundings easier to negotiate or more pleasant to be in. An OT is also able to suggest ways to tailor activities so that they are appropriate to the person’s ability. Lack of opportunities for Social Contact or to Engage with Communication can also cause distress. As a Speech & Language Therapist I look at what skills the person has, what they can understand, say, how they use body or facial expression, if they can read or write or use other forms of communication and provide family and carers with strategies and advice on how to improve their own communication to aid the person. If we can’t say it, can we draw it or show it?
Father & Daughter: “To love and be loved, That’s what life is all about”
The CEASE model enables us to put ourselves in the shoes of the person with dementia, to understand from their perspective so that rather than judging or reacting to the behaviour, we can understand why this behaviour is happening and then take steps to remove the cause of it…. to put it into Room 101. Which, to be honest, is what we all would want.
Helen Moores-Poole is an Advanced Speech & Language Therapist working in NHS Dumfries & Galloway. As a member of the IDEAS Team, she promotes the use of Speech & Language therapy as a way to help reduce stress and distress and improve psychological wellbeing in people with dementia, their families and carers. The IDEAS team have a Facebook page @IDEAS Team NHS where they publish links, suggestions and advice. Helen tweets and retweets at @poole_moores.
The CEASE model was written up in the September 2017 edition of the Journal of Dementia Care for those who may be interested in using the model in their work.