The importance of ‘how’ in dementia
I have often overheard colleagues discussing the relative merits of various activities, therapies or interventions for people with dementia. Is art therapy better than music? Collage better than watercolour? If anyone asks my advice, I usually say ‘You can use all sorts of things. After all, it’s not what you do…’
Sometimes we don’t need to do much at all. The wife of a member of a local day centre once asked me: ‘What do they do there? He says he enjoys it, but he can never tell me what he’s been doing.’ He was an older man, not frail exactly, but any strenuous activity would have required detailed risk assessments and precautions. So when one afternoon over tea he’d calmly mentioned that he’d just been out horse riding, she’d been so shocked that she’d dropped her full cup of tea. She asked me anxiously, ‘They don’t really ride horses, do they?’ I reassured her that they didn’t, but then I said: ‘How wonderful that something left him feeling as if he’d been out for a lovely ride!’ We never did discover whether it was a picture, a song or a conversation – but whatever it was, it had been very beneficial.
By definition, evidence-based interventions work, assuming that the results of research studies are always objective and generalisable. However, the way they’re delivered can have a significant effect on the outcome. When Tom Kitwood coined the term ‘malignant social psychology’ in his book Dementia Reconsidered[i] he wasn’t referring to any particular interventions, but to the prevailing culture and attitudes of healthcare professionals at the time to the people in their care. Thanks to his work and that of others since, things have improved greatly, but there is still a long way to go.
A new intervention is developed by experts, tested under controlled conditions and shown to work. Skilled therapists confirm its effectiveness, and before long, it is identified as best practice, included in guidelines and used extensively. However, with budgetary restrictions the intervention may be delivered very differently in practice – perhaps less frequently, over fewer sessions, or by minimally trained assistants. Even minor changes can influence results[ii], so apparently subtle differences can have profound effects.
How often do we stop to consider how our interventions are perceived by the person on the receiving end? How does it feel to be in their shoes? Kitwood and Bredin[iii] described four feelings that are necessary for well-being. Dementia has its own way of sapping positive feelings, and if we’re not very careful, we can inadvertently make things worse.
People with dementia often say that they feel useless and ignored, and some now use the slogan ‘Nothing about us, without us’. But what must it do to their self-esteem if our efforts to include them in consultations make them feel that we are talking about them, across them? We may have ticked an imaginary box marked ‘inclusion’, but do they really feel included? Sometimes we may need to have a conversation about the situation with a health professional or with a family member, but it’s often better to do that out of earshot, or even in writing, beforehand. Then we can focus our attention fully on the person during any consultation.
Just like anyone else, people with dementia like to make their own choices, but well-meaning carers often take over and make choices on their behalf – which may well not be what they would have chosen for themselves. When we set goals with someone living with dementia, how does that feel to them? Are they really their goals, or ours? They may go along with what we suggest, but sometimes people tell us what they think we want to hear…
Dementia puts the person at constant risk of embarrassing themselves in front of others. Reminiscence can be a wonderful tool, mentally transporting a person back to happier and more confident times. But even this activity can cause problems if we’re not careful how we do it. Looking through old photographs can trigger lovely memories – but it doesn’t always help to keep asking ‘Who are these people?’ or ‘When was this taken?’ They may not be able to tell you – perhaps they were not in the photo because they were behind the camera. The olden-days equivalent of a selfie usually involved a tripod, a timing mechanism and a quick dash into position before the camera clicked. So their own album may only have photos of other people. And the question ‘Do you remember?’ can be too challenging altogether. After all, saying ‘Yes’ may trigger further questions, making it easier for them just to say ‘No’. Instead, we can try admiring the scenery, the vehicles or the clothes in a photo, and then listen carefully to their response. We may be led down a fascinating conversational trail and learn something we didn’t know before.
Dementia is a progressive degenerative condition, so it will be getting worse. In Memory Clinics, questions are used to assess the person’s mental and cognitive abilities so that we can find out as much as possible about what we, and they, are dealing with. If it’s a follow-up appointment, they will show how far the person has deteriorated since their last visit. But when questions like these are designed to highlight impairments, it can feel as if we are deliberately trying to catch them out. When a friend’s mother had her memory test, she emerged in tears, saying: ‘He made me feel so stupid’. Intense questioning can trigger unpleasant, even traumatic, memories for someone who has been interrogated in the past.
We need to learn how to be a ‘buddy’ to the person with dementia, so they know we’re on their side. That will build up their confidence and enable them to function at their best.
How we are with the person with dementia can make as much difference to them as what we do. These concepts are discussed further in the training provided by Understanding Dementia. We have been training family carers via eight-week online interactive courses. In September 2021 we are launching a training course for professionals working in health and social care. For more details contact us via https://understandingdementia.co.uk/
[i] Kitwood T (1997) Dementia reconsidered: the person comes first. Open University Press: Maidenhead.
[ii] Cove, J. (2013) Effectiveness of weekly Cognitive Stimulation Therapy (CST) and the impact of additional carer training for people with dementia. Doctoral Thesis. University College London.
[iii] Kitwood T, Bredin K (1992) Towards a theory of dementia care: personhood and well-being. Ageing and Society 12 269-287.