Aida Suárez-González, Gill Livingston, Lee-Fay-Low, Suzanne Cahill, Niamh Hennelly, Walter D. Dawson, Wendy Weidner, Martina Bocchetta, Cleusa P. Ferri, Jordi A Matias-Guiu, Suvarna Alladi, Christine Wayua Musyimi, Adelina Comas-Herrera

The full report is available here:

Key findings:

• We have collected data on impact and mortality of COVID-19 in people living with dementia in 9 countries: The United Kingdom (UK), Spain, Ireland, Italy, Australia, the United States (US), India, Kenya and Brazil.

• The share of people whose deaths were linked to COVID-19 in care homes who had dementia ranges from 29% to 75% across those countries. Within countries,people with dementia account for 25% of all COVID-19 related deaths in England and Wales, 31% in Scotland and 19% in Italy. We did not find nation-level data for the rest of the countries. The high rates of deaths in people living with dementia seem to be linked to death rates in care homes, where many residents have dementia.

• Direct comparison between countries is not possible due to differences in systems of information: the types of data collected and ways in which they are reported, metrics used and varying definitions of COVID-19 cases and care home facilities. The different approaches to collecting and reporting data across different administrative or autonomous regions within the same nation also hinders the extraction of national-level figures in some countries (e.g. the 4 countries in the UK, the 17 Autonomous Communities in Spain and the different administrative regions in Italy).

• In many places, the basic human rights of people with dementia may have been compromised during the pandemic. These rights include access to Intensive Care Units, hospital admissions, health care and palliative care. The controversial ban on visits (including spouses and care partners) to care homes across the world, have kept people with dementia detached from essential affective bonds and provision of family care for many months. There is now a pressing need and also an opportunity for innovation, looking at new ways of providing services such as allowing visits to care homes and access to healthcare. Excellent examples of both are contained in this report.

• Guidelines and tools to support institutions and practitioners to respond better to the needs of people with dementia during the pandemic are needed as a matter of urgency. Confinement, isolation and many of the challenges brought about by the pandemic are detrimental to the cognitive and mental health symptoms in people with dementia across the world, both those living in the community and care homes[1] .

• This report offers a list of short-term and long-term actions needed to ensure that people with dementia are not being left behind in this pandemic or future ones.

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[1] https://ltccovid.org/2020/07/01/detrimental-effects-of-confinement-and-isolation-on-the-cognitive-and-psychological-health-of-people-living-with-dementia-during-covid-19-emerging-evidence/