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When trying to understand why a person with dementia behaves in a particular way, try to piece together the possible causes
Understanding why a person with dementia might behave in a particular way is crucial for improving the experience of the person with dementia and those who are caring for them.
Nursing Older People. 36, 5, 8-9. doi: 10.7748/nop.36.5.8.s3
Published: 30 September 2024
Gaining that understanding is a personalised, psychosocial process that involves looking at the whole person, including their background, environment, as well as emotional and physical well-being.
Behaviours associated with dementia are a broad spectrum, and range from constant repetition and hiding or hoarding items to agitation and aggression. They can often be a sign that a person is distressed and that their needs are not being met.
Zena Aldridge, an independent dementia nurse consultant and social care nurse fellow with the National Institute for Health and Care Research, says: ‘There’s a misconception that the behaviour [distress] is a symptom of dementia, but it’s often a symptom of the inability to communicate.
‘It’s not to say some people don’t have psychosis, but for the majority it’s around distress because they can’t communicate their needs rather than psychotic elements. The challenge is getting to a place where people don’t think that just because someone is distressed they’re psychotic.’
Distress can occur for many reasons, and there can be practical solutions, she says. For example, someone might be in pain or trying to communicate that they need the toilet. Or they might misunderstand what is happening to them and feel threatened. ‘It’s about putting yourself in their shoes,’ adds Dr Aldridge.
Frances Duffy, a consultant clinical psychologist working in dementia with the Northern Health and Social Care Trust in Northern Ireland, developed the CLEAR Dementia Care model. She is now building an online training programme called 6D-Dementia for carers and health and social care staff, with bite-sized training video content, supporting materials and live webinars.
The training programme also provides modules on psychological well-being for care staff, carers and clinical staff. She adds: ‘There are many demands on carers and staff. If they look after their own well-being they will be more able to help people living with dementia.’
Various models have been developed to help clinicians and carers do this. Perhaps the most well-known is the Newcastle Model. Introduced in 2011, it advocates an almost detective-like method of piecing together possible causes for a person’s distress and uses these ‘clues’ to come up with a strategy to manage, or ideally prevent, the distress from happening in the first place.
‘The Newcastle Model was ground-breaking because it moved away from the perception of “challenging behaviour” to “behaviour that challenges”,’ says Dr Aldridge. ‘But we’ve moved on a little bit further than that and now we’re talking about “managing distress” rather than “behaviour that challenges”.
‘And what we’re still trying to do is encourage everyone to understand distress in a different way.’
While the model itself, which looks for patterns to help work out what might trigger distress, is no longer widely used, its influence is still felt. Jane Pritchard, a Dementia UK Admiral Nurse who works with the Good Care Group, which provides care at home, says: ‘We still use the basic principles. In the reports I write and when I assess people, I look at the same headings, such as impact of medications and thinking about all different aspects of a person, but I’ve moved away from the full process.’
Independent dementia nurse consultant Zena Aldridge (pictured) describes how person-centred understanding of behaviour can help address aggression without the need for medication.
She cites the example of one of her patients, a man with dementia who needed support going to the toilet because he was partially incontinent.
‘When we took him to the bathroom he’d get really aggressive – he’d try to fight everyone off, and he was a big, strong man. Medics were saying we need to medicate him because he’s aggressive, but we said: “Hang on a minute, for 99% of the day this man is really mild, so what is it about this scenario?”’
They realised that when going into the bathroom the man would see his reflection in the mirror, supported by two carers. And he did not recognise them.
‘So suddenly you’ve been taken into the bathroom by two women who are strange to you, doing intimate care for you. He thinks there are three people watching, because he doesn’t recognise his reflection because he thinks he’s a 40-year-old man, but there’s an 80-year-old man staring back at him.
‘So of course he’s going to be distressed by that.’
The solution in this case was to remove the mirrors from the bathroom and to ensure, as far as possible, that it was the same staff who supported him. ‘We had eye contact with him and we could understand why he was distressed. We’d use soft tones and encourage him to try to open his trousers, so he felt in control. And a lot of the aggression stopped.’
A more current model is CLEAR Dementia Care, which helps nurses and care staff to consider all the factors that contribute to a person’s behaviour and to find ways to reduce distress.
It is used by Ashley Brown, lead practitioner nurse with the Dementia Home Support Team in Northern Ireland’s Northern Health and Social Care Trust, where the model was developed by consultant clinical psychologist Frances Duffy and first implemented in 2016.
‘The challenge is getting to a place where people don’t think that just because someone is distressed they’re psychotic’
Zena Aldridge, independent dementia nurse consultant
Ms Brown says: ‘It gives us a very clear direction as to where we’re going and what we want to look at, because we look at the context of what’s going on. A referral might come through saying that a person has behaviours that challenge, such as aggression. But what might be perceived as aggression from the referrer’s point of view might feel very different to the person who has dementia.’
Ms Brown gives the example of one care home resident who was resistant to personal care in bed. ‘He didn’t remember that he needed support with personal care, which meant he didn’t understand what was happening when staff tried to offer support. When he was supported to roll, he was frightened he would fall off the bed. Personal care is an intimate experience, and he was likely embarrassed when staff tried to remove his clothing.’
The solution was to slow the pace down, involve two carers in the process – one to chat to him while the other gathered the relevant belongings and equipment together – and to spend a few minutes talking to him before asking if they can support him to get up.
When a hoist was used, they would place his hands on it so that he felt something to hold on to, and when he rolled, they were to make sure they were beside the bed and reassuring him that he would not fall, adding a pillow for security. ‘That’s the kind of recommendations we make: practical but effective,’ Ms Brown says.
Dr Aldridge does not advocate any single model for communicating with people with dementia, saying that the most important thing is that nurses recognise distress and try to understand it in a person-centred way.
‘It’s about asking yourself: “Have you thought about the environment or what the person is trying to communicate?” This behaviour [by the person with dementia] is often a sign of communication, and we need to interpret that communication.’
