Improving public understanding of dementia

MTC Dementia coverMost people don’t really understand what dementia is. It is estimated that less than half of those with dementia have been formally diagnosed and low public understanding of dementia’s social impact has been a significant factor in this as the condition is often misunderstood as being entirely biomedical. Early diagnosis is important to enable access to treatment, management and planning, which reduce hospital stays as well as the emotional and practical impact on families, and NHS costs.

To address the lack of public awareness, Professor Anthea Innes and her team at the Bournemouth University Dementia Institute collaborated with a public engagement artist, Derek Eland, and the Bournemouth Symphony Orchestra, on two action-research projects.

The first used a technique called ‘diary rooms’. They exhibited hand-written responses on coloured postcards at events in England, Scotland, Malta and Puerto Rico and invited 2000 exhibition visitors to do the same. 61% of visitors without dementia reported improved understanding of what it means to live with the condition after seeing the first-hand accounts.

Researchers asked 600 members of the public, including 100 with dementia, ‘What is it like to live with dementia?’ and ‘What do you think dementia is?’

The second project invited people with dementia, their family members, students and volunteers to play alongside professional musicians in a series of orchestral rehearsals and performances. Analysis of weekly observation, video-recording, interviews and feedback forms showed improved understanding of dementia by students, professional musicians and audiences. There were also improvements to wellbeing for participants with dementia while engaging with the instruments and co-participants, and their relationships with their families improved. Relatives also experienced respite and improved mood, and felt socially supported by the group. Evaluations of the six public performances showcasing the participants’ achievements demonstrate that watching one performance alone has contributed to shifts in public perceptions about what living with dementia means.

By improving awareness and understanding by families and the wider public, these interventions are breaking down one of the main barriers to early diagnosis, paving the way to better outcomes for people with dementia and their families.

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