The Dementia UK Ecosystem: a call to action

The global burden of dementia has been exacerbated by the COVID-19 pandemic.¹ In England and Wales, almost a third of patients diagnosed with COVID-19 between March, 2020, and March, 2021, had dementia, making this the most common pre-existing condition among individuals who died.² Between March 27, 2020, and Jan 8, 2021, the largest increase in excess mortality in England was observed in people with dementia, among whom mortality was eight times higher than before the pandemic.³

Although vaccination is leading to a so-called new normal phase of the pandemic, the scale of the dementia challenge is likely to increase substantially. The closure of many memory clinics, combined with social distancing measures and fear of infection, has led to a sharp decrease in referrals, with around 40 000 people waiting for a diagnosis across the UK at the time of writing. In March 2021, dementia was the leading cause of death in England.⁴

The wider dementia community needs to stand ready for this challenge. New ways of working must be implemented to maintain high quality care in a world where COVID-19 is endemic, including more flexible procedures for direct referrals and better telemedicine. A coordinated response across the clinical and research sectors is required.

The Dementia UK Ecosystem brings together leaders from the UK Dementia Research Institute, Dementias Platform UK, the National Institute for Health Research, the pharmaceutical industry, and funders to create a cohesive community, coordinating efforts to accelerate progress in tackling dementia.

This strength of will must be matched by support from the UK Government. Now, more than ever, is the time to invest in dementia research. COVID-19 has shown the world how science can tackle major health challenges, which should set an example to learn from. Members of Dementia UK Ecosystem have joined forces to coordinate research efforts and to strengthen collaborations between researchers across the preclinical and clinical sectors. We will work to streamline clinical trials and implement novel systems to enable effective recruitment. This effort requires long-term funding commitment and increased investment in a field that remains considerably underfunded.⁵

The current UK Government declared dementia as a priority in their 2019 general election manifesto,⁶ with a promise to double research funding in a so-called moonshot effort to find treatments. People with dementia have been disproportionately affected by the pandemic, and the research sector has faced more than a year of severe disruption, thus now is the time to fulfil that promise. The pandemic will pass. Dementia will remain. This is not a problem we can wait to solve.

GL and BDS report support from the UK Dementia Research Institute (funded by the UK Medical Research Council, Alzheimer's Society and Alzheimer's Research UK) to facilitate Dementia UK Ecosystem discussions on topics relevant to this work. MR is the National Director for Dementia Research at the National Institute for Health Research (NIHR). JBR reports research grants from the NIHR, UK Medical Research Council, Wellcome Trust, PSP Association, Evelyn Trust, Alzheimer Research UK, and Parkinsons UK, unrelated to this work; has received consultancy fees from Astex, UCB, Biogen, WAVE, and SV Health unrelated to this work, and from Alzheimer Research UK, unrelated to this work; has provided expert witness reports in private medicolegal cases unrelated to this work; and is a non-remunerated Trustee of Guarantors of Brain, PSP Association, and Darwin College Cambridge.