Improving the experience of dementia

We spoke to Professor Linda Clare to mark Dementia Awareness Week.

For Dementia Awareness Week we spoke to Professor Linda Clare (University of Exeter), who is leading a clinical trial – which featured on BBC’s Horizon on Wednesday 11 May – looking into goal-oriented cognitive rehabilitation for those in the early stages Alzheimer’s disease or vascular dementia. She spoke to us about the future for dementia research and what should be prioritised, new initiatives, and the news that the Alzheimer’s Society has invested £50 million to establish the UK's first dedicated Dementia Research Institute.

"Research on causes and possible treatments is naturally important although very complex. There are many different conditions that can lead to dementia, and furthermore some people who develop dementia appear to have none of the recognised underlying pathologies. Therefore talk of a single ‘cure’ is not realistic. Cognitive psychology and neuroscience play an important part in understanding the neurobiology of dementia and evaluating the potential of new treatments. Initiatives like the Dementia Research Institute will help to deepen understanding of the neurobiology of dementia.

Although it occurs in younger people, dementia is generally associated with ageing, and people with dementia also contend with many other age-related challenges which can include problems with mobility and sensory acuity as well as co-morbid conditions. Large-scale population studies are important to help us understand the multiple processes involved and the interactions between them, gain information about incidence and prevalence, and plan for future health and care needs. These kinds of studies also help us understand more about the risk factors for dementia and what might be done to reduce risk and hence delay the onset of symptoms. The Medical Research Council’s Dementia Platforms UK initiative, by bringing together a number of cohorts, will help to ensure that we gain maximum value from these large studies.

While research on causes, treatments and risk reduction is immensely important, we have over 850,000 people living with dementia in the UK right now, and there is an urgent need for high-quality research on how best to support people with dementia and their families. The news that the Alzheimer’s Society has contributed £50 million to ensure that the Dementia Research Institute includes research in care, services and public health is a very welcome development.

The James Lind Alliance priority-setting exercise has produced ten priorities for care research and the seven ‘I statements’ also provide a guide to what is important. I think we will see more emphasis on what contributes to the ability to ‘live well’ with dementia and how we can improve the experience of dementia, as well as on how we can ensure that people needing care receive high-quality, genuinely person-centred care and appropriate health services and, at the appropriate time, sensitive end of life care. There will be a focus on enabling people with dementia to function at the best possible level, and on supporting families to facilitate this process. At a broader level, initiatives to make communities dementia-friendly or dementia-supportive will continue to evolve. Research will focus increasingly on what is meaningful for people with dementia and carers and they will be increasingly involved in the research process.

As well as new research in the broad field of care, there will certainly be more emphasis on taking the best research evidence through to implementation so that it makes a difference to the lives of people with dementia and carers. The initiatives that are now coming through will offer opportunities to do more and will provide good potential for capacity building through training for future research leaders."

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