Excess deaths from all causes and dementia by setting Scotland 2020-2021

Conclusions

Dementia is the most common pre-existing condition in COVID-19-related deaths

There is a clear link between COVID-19 and pre-existing health conditions, with over 90% of COVID-19-related deaths registered with at least one pre-existing condition^[4]. In 2020, dementia was the most common pre-existing condition: it was present in 1 in 4 COVID-19-related deaths.

Deaths involving dementia were 21% higher in 2020 compared to the five-year average

In 2020, there were 5% more deaths caused by dementia compared to the five-year average, with the main spike observed in April 2020 (67% higher⁴). While this was proportionally less than excess deaths from all causes (12% higher than the five-year average), excess deaths involving dementia in 2020 were 21% higher than the five-year average.

To better understand the impact of the pandemic on deaths of people diagnosed with dementia, deaths involving dementia were analysed regardless of the cause that led to these deaths. Deaths involving dementia include deaths registered with dementia as either a contributory or underlying cause of death. The analysis suggests that excess deaths involving dementia in 2020 could almost wholly be attributed to COVID-19. The number of deaths involving dementia that also had COVID-19 mentioned on the death certificate represented 99% of the number of excess deaths involving dementia.

There were fewer deaths in hospital and more deaths in care homes and at home/non-institutional setting in 2020 compared to the five-year average

When looking closer at the setting where deaths involving dementia were registered in 2020:

• Care Homes: 1,638 excess deaths involving dementia (26% higher than the five-year average). Deaths involving dementia and COVID-19 represented 96% of this number. 59% of deaths involving COVID-19 in care homes also involved dementia.
• Hospital:521 deaths involving dementia and COVID-19, however, deaths involving dementia were 1% lower than the five-year average (41 fewer deaths). 14% of deaths involving COVID-19 in hospital also involved dementia.
• Home/Non-institutional setting:560 excess deaths involving dementia (56% higher than the five-year average). The number of deaths involving dementia and COVID-19 represented only 9% of this number (48 deaths).

It is important to note that the overall number of deaths registered at home/non-institutional setting is lower than in care homes and in hospital, which is reflected as a higher percentage change. These data suggest a shift in the location of deaths involving dementia in 2020 compared to the five-year average, with more people with dementia dying at home/non-institutional setting compared to in hospital. However, more deaths involving dementia and COVID-19 were registered in hospital than at home/non-institutional setting.

Excess deaths involving dementia reduced over the course of the pandemic

After the initial peak of excess deaths in April 2020 during the first wave of the pandemic, deaths caused by dementia were consistently lower than the five-year average, in particular over the winter period. Deaths involving dementia in the second wave initially exceeded the five-year average, but were considerably lower compared to the first wave. Between March and May 2021 deaths involving dementia remained below the five-year average. By setting, the largest reduction in excess deaths over the course of the pandemic was observed in care homes, albeit this still remained the setting where most deaths involving dementia occurred.

The reduction in excess deaths may be linked to vaccination and improved measures for reducing infections in care homes

The reduction in excess deaths involving dementia over the course of the pandemic may relate to improved measures to reduce infection in care homes and the prioritisation of care home residents and staff in the vaccination programme, in addition to higher average reporting of deaths in winter. This reduction is also likely to be related to the peak in excess deaths caused by dementia at the start of the pandemic. Some of these deaths may have involved COVID-19 even if not registered on the death certificate, since testing was less widespread outside hospital settings and there was less awareness of all COVID-19 symptoms at the beginning of the first wave. With the rollout of the vaccination programme in care homes in early 2021, it is possible that the effects of vaccination are observable already during the second wave. Average weekly excess deaths in care homes and involving dementia were greatly reduced in the second wave, to below average levels in summer 2021.

While more work is required to understand the link between the COVID-19 pandemic and deaths from other causes, it is likely that some people who died from COVID-19 in 2020 would have died from other causes such as dementia, heart disease or respiratory disease. However, their deaths may have been hastened by COVID-19 infection. Further, some excess deaths registered as being caused by dementia at the start of the pandemic may have involved COVID-19 if the person was not tested for infection before their death. In conclusion, COVID-19 disproportionately affected people with dementia (and people with other pre-existing conditions) and led to excess deaths involving dementia, particularly early in the pandemic in care homes.