Shared Reading for Healthy Communities: Living Well with Dementia

The next instalment in our series of highlights from this year's The Reader Organisation National Conference recaps our seminar on 'Living Well with Dementia', part of our Healthy People morning session of the day.

Our reading with people living with dementia is one of our longest running strands of work, and the need for meaningful, stimulating activity for dementia patients is crucial as levels of dementia are set to increase by 62% over the next two decades in the UK alone. The publication of A Literature-Based Intervention for Older People Living with Dementia in 2012 by the Centre for Research into Reading, Information and Linguistic Systems (CRILS)  at University of Liverpool found that engagement in shared reading activity produced a significant reduction in dementia symptom severity and contributed to the wellbeing of care home staff and residents.

The session was chaired by Professor Philip Davis, Director of CRILS, and explored the humanising effect of shared reading on a condition that can often be considered to 'take away' the person. As one of our readers puts it:

‘We need it you see, it helps us remember the things’

This was an excellent session with speakers Martin Orrell (Professor of Human Ageing and Health, UCL), The Reader Organisation’s Wirral Coordinator Helen Wilson, and Julie Latchem, a trained physiotherapist and former matron of a care home, who has been documenting research on dementia. It is very unusual that all three speakers should be excellent, both individually and together, but this was the case on this occasion: there was a strong sense of the reality of the issues - many attendees having personal experience of the problem through relatives - and a fine blend of practical with idealistic concerns.

The problem of dementia is one which has arose out of a success story – the increased expectation of life beyond 65; that the problem tended to be more acute after 80 but that many people died of other causes before dementia itself became the major issue. This may not be good news but it offers thoughts that are not simply related to the dementia-crisis.

The capacity to read is itself an indicator of effects of ageing: testing memory and attention in relation to longer works. An older generation engaged with reading is not just one which remembers old poems studied at school and learnt by heart, say, but also creates responses to previously unknown works, new experiences triggering new responses.

As a shared reading programme, Get Into Reading offers a humane element to both staff and service-users and their families to prevent the ‘industrialisation’ of care. It is in marked contrast to ‘childish’ activities or passive ones, and requires small-group numbers even when the care homes need to involve a large number of people. A number of Get Into Reading's humanising benefits were identified during the session, including:

• a window on the world and in relation to other minds
• a time machine taking people to other ages
• a catalyst for personal memory
• a sharing activity
• a wonderful rhythmic calming effect

Service-users often repeated and repeated key places in the texts: this was a very important sign of attention and involvement to be encouraged. It was also discovered that potentially ‘upsetting’ content did not have a negative effect on people living with dementia but instead came as a relief and release.

The session produced important points regarding evaluation, which was found to be necessary and possible in order to show the effectiveness of the reading groups to potential funders and beneficiaries: this included the use of quantitative measures (grading the usefulness of particular poems, the rise in someone’s confidence, etc.) as well as qualitative analyses.

Further thinking provided valuable suggestions upon how shared reading activity for people with dementia may be extended in future, and how it is already pushing the boundaries. Insomnia and disturbance are major problems in care facilities, and there was discussion about how The Reader Organisation could train carers how to read to restless, sleepless folk at night, one to one. Another key point mentioned - something which is currently happening within TRO's shared reading groups with people with dementia - was the importance of group leaders daring to engage people’s attention by asking more pointed questions individually, even at the (weighed) risk of not getting a response or putting a vulnerable person on the spot. Thus in response to a Get Into Reading worker asking why (in relation to an Elizabeth Jennings’ poem) love could be so strong, a service-user paused for a long time before answering, ‘Because it wants to be better than itself’.

A Literature-Based Intervention for Older People Living with Dementia can be downloaded on our website, where you can also find out more about our aims and outcomes in reading with older people and people living with dementia.

The Reader Organisation has been featured in Taking part: activities for people with dementia,  the Alzheimer's Society revised book detailing activities that are enjoyable and stimulating for both carers and people with dementia at all stages of the condition and reflecting examples of recent best practice and innovation in dementia care. To order your copy, please see the Alzheimer's Society website.