Report: Public Perceptions

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1. Foreword Dementia is one of the biggest challenges of our time. Over 850,000 people in the UK are living with the condition and more than half of us will know someone affected by it. Dementia is now the leading cause of death in the UK and there are no effective treatments to slow, stop or prevent the diseases, like Alzheimer’s, that cause it – yet. The growing investment in dementia research is beginning to reap rewards and there are an increasing number of clinical trials for dementia underway. Considerable progress is also being made with new detection and diagnostic methods. The arrival of new treatments will fundamentally change the way society thinks about dementia. In particular it is likely that new treatments will need to be offered at a much earlier stage, possibly before we observe clinical symptoms. Making the decision to undergo treatment at this stage will require wider conversations about risk and our understanding of disease progression with potential patients. We also know that public understanding of dementia has historically been poor, despite increasing awareness of the condition. The challenge of explaining a complex medical condition, together with the fear and helplessness typically associated with developing dementia, has meant that many people would prefer not to engage with the topic. How do we engage the public in conversations about detecting the earliest changes in the brain that could lead to dementia? This report aims to provide insight into how to address these issues. What does the public understand currently, and what are their fears and concerns? Insight is, of course, only the start of the process, and the next steps to address these issues will be crucial. Prof Jonathan Schott Alzheimer’s Research UK Chief Medical Officer

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