Reading and Dementia
This week, the Alzheimer’s Society called for all care staff to receive mandatory training in dementia care. The call came after a survey carried out by the Society found that many patients with dementia living in care homes go for hours without speaking a meaningful word to anyone. The shocking statistic that has been used in news reports this week states that some residents spent less than two minutes in every six hours talking to staff or other residents. I’m not great at maths, but even I can work out that if a patient is up from 8am until 10pm, this means, on average, they spend less than 5 minutes in meaningful conversation with another person during a whole day. Obviously, that is a worst-case scenario statistic, used to shock people into action, but is the general reality of the situation that far removed from this? What does the report mean by a ‘meaningful word’? And most importantly, what can we do to combat this situation, especially with the number of people with dementia in the UK expected to rise to more than 1 million by 2025?
Apart from the obvious human need for interaction and stimulation, these things are also thought to help manage dementia and so it is highly disturbing that in ‘care’ home situations, these seem to be completely absent. Relatives interviewed for the report claimed that there was ‘not enough’ for dementia patients to ‘do each day’ and when you consider that a care home may have up to 60 residents, all needing high levels of care and attention, it is not difficult to see that staff simply do not have the time to sit and talk to patients for hours on end. And so, even if care home staff are given training to work with patients with different forms of dementia–and they undoubtedly should be–the question that remains with me is, will they also be given the time to enable them to provide the interaction and stimulation so desperately needed? My guess is, no.
Since November 2006 I have been working on a Get Into Reading project in a fantastic care home here in Liverpool which specialises in dementia care. I run two weekly reading groups, following the GIR model, and also provide one to one reading sessions for patients. In a week I work with an average of 25 patients, reading poetry together. It is a simple idea, but the effect is quite astounding. After reading ‘The Oxen’ by Thomas Hardy, one resident turned to the group and said ‘It has something in it, which hits you here (pointing to her heart) and it speaks to you and stays with you’. I have seen people’s eyes light up when they hear the first line of an old familiar poem. Wordsworth’s ‘I wandered lonely as a cloud’ triggers a general response of ‘OOOHHH, I know this one, I learnt it at school. It’s wonderful!’ Most can recite at least the first stanza and go on to talk about the experience of memorising it to recite as children. It is amazing how these memories of words and sound patterns remain, and how they act as a shared communication when you read them together. New poems are also powerful and produce strong reactions. In one group session we read ‘Beer’ by George Arnold. One resident commented ‘I loved it. It gave you the length as well as the words and you felt you didn’t have to rush’. I re-read the line ‘I sit/While golden moments flit’ which echoes this idea of not rushing, and she said ‘and they are special moments, especially if you haven’t read for weeks and then you read this here and it touches you and you realise how much you have been longing for it really. I love poetry’
People listen to one another and hear what the others are saying. They encourage one another with their reading and I have noticed that they love most of all to read aloud together, sharing the reading in the purest sense. This means that less confident readers can join in too without any pressure. The statistic from the Alzheimer’s Society of two minutes’ meaningful conversation in every six hours included residents interacting with residents. The reading group is a wonderful way of encouraging conversations between residents as well as staff, with the poem acting as a shared point of focus.
Over the last year I have been struck by the conversations I’ve had with patients and the effects that reading poetry has had on residents. But it feels like a drop in the ocean. After all, 25 out of 700,000 (the number of people living with dementia in the UK today) seems pitiful. How can this be rolled out so that it benefits more people? I’ve been thinking about the possibility of a national volunteering scheme, in which hundreds of people could be trained to deliver this service in care homes across the country. That’s a big idea, but it seems to me that as the health minister draws up a new strategy for dementia care, he would do well to think big on how as a nation we can care for people with dementia effectively. We must do so in a way which will make that shocking statistic a thing of the past, rather than making plans that look impressive on paper but make little difference to the lives of residents in the real running of a busy care home.
We would love to hear your thoughts on this.
By Katie Peters