I was invited to give a talk about dementia recently, but was asked to avoid the word dementia. It seems people are so afraid of the condition and the stigma is such that they don’t want to hear the word uttered. It’s true that dementia is the condition that people are most afraid of, and this is perpetuated by negative coverage in the media and beyond. Cinematic portrayals often foreground the ‘tragedy’ of the condition (Alzheimer’s Europe, 2013). As Zeilig (2014) suggests, dementia is often equated witha complex, unknowable world of doom, ageing, and a fate worse than death’. As someone said to me recently ‘If I get it [dementia] just buy me a one-way ticket to Dignitas’. Metaphors related to warfare are commonly used e.g. the ex Prime Minister David Cameron and now President of Alzheimer’s Research UK stated: We‘ve got to treat this like the national crisis it is. We need an all-out fightback against this disease, one that cuts across society. (PM Office, 2012). With old age the biggest risk to developing dementia, and an ever-growing ageing population, it’s unsurprising the public are scared.

Yet there is widespread confusion about dementia, e.g. dementia and Alzheimer’s Disease are commonly used interchangeably. Dementia describes a set of symptoms which impact on cognitive ability and behaviour, often leading to loss of independence. Most dementias (about 60-65%) are due to Alzheimer’s Disease, other rarer forms include vascular dementia, and dementia with Lewy bodies. Common symptoms include language difficulties, confusion, loss of memory and sometimes, behavioural disturbance such as wandering or disinhibition. Dementia is usually progressive (i.e. early, mid and late stage) however people will experience symptoms differently, at different times. The numbers of people living with dementia are high, as is the cost of providing care, currently 850 000 in the UK, costing £26 billion a year. The numbers of those diagnosed are predicted to rise higher, to over 1.1 million in 2025, and there’s no imminent cure on the horizon, despite what newspapers report.  

Everyday, stories are published about possible risks for developing dementia, and on breakthroughs and even cures for the condition, that are likely many years from implementation, or that come to nothing. This reinforces public confusion and fear, and can create false reassurance and distress for families involved, as reported previously. Examples include recent reports on the benefits of Marmite, and cups of tea, and the risk of living on a busy road. Combined with the poor perception of those living with dementia, it is little wonder people are worried. The appetite for information suggests that the public do want to talk about dementia. I saw this recently at a Q&A I participated in after the excellent theatre production The Hearing Trumpet. The play finished at 1030pm on a weeknight, and I thought: surely no one will stay for the Q&A. But stay they did and there were many questions, moving testimonials from family carers and care staff, and lively discussion focusing on a desperate need for information, support, and hope that there may be effective ways to help someone living with dementia.

Research is progressing however dementia receives far less funding than cancer, which gets 13 times as much, despite the burden of care being far greater in dementia. My research focuses on dementia care, as compared to dementia cure, the latter of which receives the lion’s share of funding support, see for example the new £250 million UCL-led hub. People seem much more interested in eradicating dementia, rather than enhancing the care of those living with it. This stands to reason given the fear factor.

Dementia care research is at an early, albeit exciting stage. My focus is on arts and multi-sensory activities that provide stimulation, engagement and pleasure. This is aligned with Kitwood’s well-established notion of ‘person-centredness’ that focusses on provision of bespoke, individualised care. Activities involving art, drama and music are showing promising results and a recent conference saw over 100 delegates present inspiring evidence that is changing the dementia care landscape, globally. My research looks for ways to connect and communicate with people with dementia whose reality may be different from the norm. The results indicate not simply alleviation of symptoms but new learning, and moments of pleasure and joy, even in the later stages of dementia. These findings are inspiring and positive, countering the scare stories. The work involves collaboration with people from different disciplines, including art, design, music, architecture, nursing, psychology, even hospitality. This type of transdiscplinary work is offers exciting and novel opportunities, and underpins the ethos of a new Dementia Care Centre at University of West London. A similar approach is seen in the pioneering work being done by the Created Out of Mind team at the Wellcome Hub whose residents are challenging perceptions about dementia through art and science collaboration.

This Dementia Awareness Week, lets unite against dementia, talk about it, and focus on making lives better for those living with the condition, but also for all of us as we grow older. I and colleagues will be in the Old Market Square in Nottingham on the 15-16th May with The Imagination Café,  a pop-up space inspired by the artwork made by people with dementia as part of the project Dementia and Imagination.

jim for transparencyThe Café showcases the innovative research work that we’re doing, challenges negative perceptions, and gives the public a chance to visit to find out more about dementia. In the café there will be a range of activities for the public to try, specially designed for people with dementia including music, storytelling, drama and art, all underpinned by research. An afternoon tea menu specially designed for people with dementia will be served by Jane Clarke, and staff from Dementia UK and the Alzheimer’s Society will be on hand to offer advice and information. Come and visit.

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