Neglect during a crisis: the stark reality

Abstract

The effect of the COVID-19 pandemic on people with dementia is being increasingly recognised, but perhaps not fully appreciated by health-care planners and policy makers. A regularly updated report entitled Impact of COVID-19 on people with dementia, by the International Long-term Care Policy Network (ILCPN), highlights the high death rates among people with dementia worldwide. The report update on Aug 19, 2020, showed that, of deaths linked to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection in care homes, 29% to 75% occurred in people with dementia across Australia, Brazil, India, Ireland, Italy, Kenya, Spain, the UK, and the USA. The disproportionate effect on people with dementia is being exacerbated by restricted access to health care services, removal of face-to-face support, and interruptions to diagnoses and research. The ILCPN report, an international collaboration coordinated by The London School of Economics and University College London, UK, also highlights the need to mitigate a loss of research momentum, with a call for improved investment in dementia research and for the development of protocols that allow research to continue during the pandemic. Further research will be crucial to understand the impact of COVID-19 in long-term care, particularly the effects of policies to minimise disease transmission and control infection (eg, restriction of residents' opportunities for physical activity and social interaction) on excess deaths in care homes. The Alzheimer Disease International's World Alzheimer Report, published on Sep 21, 2020, draws attention to the need to address this research gap as long-term care providers will have to continually weigh the risks of infection and transmission to residents and staff against the risks to residents of losing access to activities and interactions that support their wellbeing and quality of life. The COVID-19 pandemic has revealed the stark reality of neglect of people with dementia, normalised by societies. Knowledge gaps that need to be filled to address this shortcoming could widen as brain research faces a difficult situation. Neurological research suffers from a disproportionate lack of funding relative to both the burden of these diseases and funding for other types of disease, particularly in Europe. Despite a petition urging the European Commission to make brain research a top priority for Horizon Europe, inexplicably, in times of a global and acute health crisis, the EU is sizing down its research ambitions altogether. The 7-years' budget of €94·4 billion put forward in May 2020, by the European Commission for the Horizon Europe programme for research and innovation, has been cut to €80·9 billion, even though the European Parliament had asked for €120 billion. Of major concern is that funding for investigator driven research will be disproportionally affected by these cuts. Public funding is crucial to bridge the divide between investment in academic research and in industrial research and development that is evident in the field. In the USA, Alzheimer's disease and dementia research is being accelerated due largely to unprecedented levels of federal funding and philanthropic investment. Funding for Alzheimer's disease research by the US government is currently $2·8 billion annually, more than four times what it was just 5 years ago. As a result, although the pandemic has slowed research, scientists have heightened support to advance basic knowledge about Alzheimer's disease, explore ways to reduce risk, uncover new markers for early diagnosis, and develop new treatments. One example is the Accelerating Medicines Partnership–Alzheimer's Disease, involving the National Institutes of Health, 12 biopharmaceutical and life sciences companies, and several non-profit organisations, which aims to transform the current model for developing new diagnostics and treatments by jointly identifying and validating promising biological targets of disease. Funding agencies in Europe need to follow suit and participate in multi-sector funding programmes for brain research and earmark a larger part of their budget for neurological research. International collaboration makes science stronger, thus UK and EU negotiators need to come to an agreement for the continued involvement of the UK in Horizon Europe. As stated by Alzheimer's Disease International Chief Executive Officer Paola Barbarino: “We need governments to act immediately to protect our vulnerable communities. Governments must not waiver from their commitments identified in their national dementia plans or in developing plans, in line with the WHO Global action plan on dementia, which 194 WHO Member States ratified.” Urgent action is needed to improve services for people with dementia as the pandemic continues, and to increase financial investment to build a strong foundation for neurological research. For the ILCPN international report see Suárez-González A, Livingston G, Low LF, et al. Impact and mortality of COVID-19 on people living with dementia: cross-country report. LTCcovid.org: International Long-Term Care Policy Network, CPEC-LSE: Aug 19, 2020 For the ILCPN international report see Suárez-González A, Livingston G, Low LF, et al. Impact and mortality of COVID-19 on people living with dementia: cross-country report. LTCcovid.org: International Long-Term Care Policy Network, CPEC-LSE: Aug 19, 2020 Dementia and COVID-19: a health and research funding crisisNeurological research is at a turning point. Emerging technological advances offer opportunities to understand brain function in health and disease in a way no one could have even dreamed of 5 years ago. With these advances, combined with new methods of targeting the brain with antisense therapy or therapeutic antibodies, we stand on the verge of breakthroughs in treating neurological diseases. Similar to our colleagues working in many other disease areas, we share a vision of how technological advances should be integrated and deployed to understand, predict, diagnose, and treat neurological diseases. Full-Text PDF