In July 2020, Alzheimer Scotland called for the Scottish Government to take urgent action to understand the reasons why people with dementia were disproportionately represented in the deaths from COVID-19 and the excess deaths during this pandemic. We now welcome the publication of the Scottish Government’s ‘Excess deaths from all causes and dementia’ report today.

First and foremost, the people mentioned in this report have left us too early. Their loved ones have been torn apart by grief and loss. An unbearable loss further compounded by not being able to say a proper goodbye alongside lifelong friends and family. The number of people impacted by this is staggering. It reinforces our view of the hidden impact that the pandemic has had on people living with dementia and their families. Whilst we might now be beginning to learn to live with COVID-19, these families will need time, support and a deep understanding of the loss they have experienced, notwithstanding the impact it will have had on their own physical and mental health.

The report raises many more questions as to why so many people with dementia living in care homes quickly became victims of COVID-19 and those living at home falling victim to increased excess deaths for other reasons. These questions can only really be answered through the rigour of the Public Enquiry, and we hope that this will offer some better answers for those people who will be reading this report today.

The fact that so many people living in care homes were impacted must make us question the logic and rationale of this form of care for those most vulnerable people in our society. The large Care Home Model with, in many cases, some thirty people or more living together and being cared for with a small team of committed care staff is borne out of delivering the best quality of care within an economy of scale. Perceived cost effectiveness is at its core, as is the issue of who pays for it. These figures clearly indicate that large group living environments present the greatest risk of virus transmission for people with dementia. If the only way for Care Homes to mitigate these risks is to lockdown and isolate people in their rooms, deny them access to their loved ones and any form of normal living, leaving their families in complete distress, then we must question whether this is in fact the right model as part of the debate moving forward.

In our view, now is the time to start discussions about a new approach. In a world where there might be further variants, new pandemics and the need for new methods of preventing transmission, it would be folly to maintain a model of large group living. We need to radically transform our approach, develop a smaller scale approach to residential and nursing care. One that is not based on large scale but designed to meet the high care needs of individuals, and one which can withstand the ongoing threats of future pandemics without the unbearable consequences that those we have lost and their loved ones had to endure. This might cost more, but we know first-hand this can be delivered. We need to begin designing and building smaller personalised units, with built in facilities to maintain family contact and avoid complete lockdown during any further outbreaks. We must have care environments which are not built on economies of scale but designed to tackle the rigours of a world learning to live with COVID-19 in as safe, humane and caring way as possible.’