“It’s been devastating”: How COVID-19 is impacting Alzheimer’s research and care

Alzheimer’s researcher Dr Ashwin Venkataraman shares first-hand insights into how the COVID-19 pandemic has affected patients and ongoing research.

Dr Venkataraman is an Alzheimer's Society Clinical Research Fellow at the UK Dementia Research Institute at Imperial College London. His research focusses on using imaging to understand how the brain changes during the early stages of Alzheimer’s disease.

In a recent letter published in The Times as part of a campaign jointly led by the Alzheimer’s Society and Alzheimer’s Research UK, Dr Venkataraman was one of 300 academics to call for “urgent government action” in the face of a severe funding shortfall in dementia research.

The day before the publication of the open letter, a report from the London School of Economics and University College London showed that people with dementia accounted for a quarter of all COVID-related deaths in England and Wales, and three-quarters of all deaths in care facilities globally.

In light of this, we spoke to Dr Venkataraman to better understand how COVID-19 has affected people living with Alzheimer’s and its impact on ongoing research into the condition.

Following a report published earlier this month, why is it that people with Alzheimer’s appear to be more vulnerable to the disease?

Around 850,000 people are living with dementia in the UK. Alzheimer’s is the biggest cause of dementia. There is no clear evidence at the moment that dementia in itself increases the risk of contracting COVID-19. However, many people living with Alzheimer’s have other health conditions, and it tends to affect people in later life. These factors essentially mean that they are more vulnerable to developing COVID-19 infection and its effects, and often in a more severe form.

Also, the cognitive difficulties associated with the condition make it more challenging for someone with Alzheimer’s to comply with safety measures. Relatives of my patients often tell me that their loved ones don’t understand lockdown and that they can’t go out and about as they normally would. It’s often hard for someone with Alzheimer’s disease to retain new information because the condition affects short-term memory. This makes it difficult to learn and remember new rules like maintaining a two-metre distance and washing hands for twenty seconds. This is partly why this group has been more vulnerable to COVID.

How has lockdown affected people with Alzheimer’s, in terms of the daily management of their health and care?

A proportion of people with dementia are in care homes, and they tend to be older and have severe Alzheimer’s with multiple other health conditions; this setting has been hit particularly hard by COVID. At the peak of the pandemic, there were significant staff and personal protective equipment shortages in hospitals, care homes and for community carers. There was difficulty in accessing medical care in the community with closures of day centres and other facilities. People were also scared to access help. All of those things combined would have significantly affected people with Alzheimer’s disease and reduced the level of care they would normally receive on a day-to-day basis, for example, reminders to take medication and regular feeding and washing. Social interaction with family, carers and healthcare staff is also beneficial, and many people have become lonely, isolated and depressed without it.

How has the pandemic affected your research and Alzheimer’s research more widely?

"Dementia is more deadly than COVID and more deadly with COVID. Dementia is the number one cause of death in the UK and in combination with COVID it leads to greater loss of life and comorbidity." Dr Ashwin Venkataraman Clinical Research Fellow

It’s been devastating to Alzheimer’s research. I was one of 300 signatories on an open letter published in The Times. One of the key messages was that the disruption caused by COVID-19 will lead to the loss of a generation of dementia researchers. Major Alzheimer’s charities are not approving any new projects and a freeze on funding is set to continue until at least January 2021 due to a huge fall in income. Currently, only about 15% of dementia researchers have been able to resume work at more than 50% of original capacity. It will take years to recover without new investment. My colleagues and I are very concerned about the future, as a significant number of researchers are now leaving the field.

A few clinical studies have weathered the storm, but the day-to-day reality of running these projects is now very different. Mine is one of the few Alzheimer’s patient studies to have resumed, but a lot has had to change. We’ve had to adapt and learn how to make things a lot safer. We’ve created a new COVID protocol given the higher risks posed to our patients. At the moment, we’re trying to increase our research activity while we can in anticipation of a second wave of infections and potential national or local lockdowns.

Our research environment has changed significantly, and this has affected our work on a very fundamental level. Our patients and their families are, understandably, under a lot of stress. Practically, we also have to wear full protective equipment – gowns, masks and visors – and for patients with Alzheimer’s disease, that poses a lot of challenges. It makes it difficult for them to do cognitive tests, understand emotions and gestures and to hear what we’re saying. So, it isn’t ideal, but we’re coping.

I think it’s important to remember that dementia is more deadly than COVID and more deadly with COVID. Dementia is the number one cause of death in the UK and in combination with COVID it leads to greater loss of life and comorbidity. That’s why increased and sustained investment in dementia research is so important, for now, and in the future. 

World Alzheimer’s Day takes place on 21 September and is part of World Alzheimer's Month. For more information and resources, please visit the Alzheimer's Society website.