Patterns of Deaths in People With Dementia and Alzheimer's During the COVID-19 Pandemic in England: Lessons for Palliative Care Before the Next Pandemic

ABSTRACT

Background/aims: Older people had the highest death rates in England during the COVID-19 pandemic, before the vaccination programme. Deaths in care homes were especially high in the 1st Wave (W1) - April 2020 of the pandemic, with a lower peak in the 2nd Wave (W2) - December 2020/January 2021. People with Dementia and Alzheimer's (D&A)) were among the most vulnerable to become victims to COVID-19. Aims: To describe mortality patterns in people with (D&A) during the COVID-19 pandemic to learn lessons for Palliative and End of Life Care (P&EOLC) for D&A in pandemics. Methods: Mortality data in England, January 2019 to May 2021 analysed by calendar month and place of death for D&A as underlying cause (UC) and contributory cause (CC) on death registrations. The key underlying causes for D&A CC deaths were identified. Comparisons were made for 2020 with 2019 and for W1 and W2 the same months in 2019/20 using descriptive statistics. Results: In 2019, 64,468 people died with D&A as UC vs. 67,872 in 2020 (+5.3%), but strikingly deaths with D&A as CC increased 69% (26,445 to 44,624). The W1 and W2 peaks for D&A deaths were highly significant but different in nature. In W1 79% (8,435) D&A UC deaths were in care homes vs. 64% (3,435) 2019. For D&A CC deaths in W1 (April 2020) there was ∼400% increase in deaths (2,146 to 10,682) and 325% and 569% increases in hospital and care home deaths. In W1 COVID-19 (7,496 deaths) was the main (70%) UC for people dying with D&A as CC, increases also for Circulatory Disease +44%, Cancer +31%, Parkinsons +117% and respiratory disease (COPD) + 69.3%. W2 saw a 19% reduction in D&A UC deaths but +139% as CC with COVID-19 main UC. Conclusions: People with D&A were extremely vulnerable to risk of death during the COVID-19 pandemic, especially if living in a care-home and due to pressures on healthcare. The speed of surge in deaths and impact on care homes highlights the critical need for Advance Care Plans/Power of Attorney for people with D&A and especially training of care home staff in P&EOLC.