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Dementia and COVID-19: Who Died, Where, and What the Death Counts Missed

Published 2026-10-16

In the first year of the COVID-19 pandemic, people living with dementia were among those most likely to die, in the countries whose data are detailed enough to show it. In England and Wales, dementia was the condition most often recorded alongside COVID-19 on death certificates, and in the United States deaths among older people with dementia rose about twice as fast as among those without it. Much of that toll fell in care homes, and some of it came not from the virus but from what the response to it took away.

For many families, the pandemic meant a closed care-home door, a phone call instead of a visit, and a relative who could not understand why no one came. People with dementia were not only more exposed to the virus; they also depended most on the routines, contact and hands-on care that lockdowns interrupted. The figures below bring together national statistics and peer-reviewed studies from Europe, North and South America, to show what happened, where the counting fell short, and what a better-prepared system would do differently.

25.6%of deaths involving COVID-19 in England and Wales from March to June 2020 had dementia or Alzheimer disease as the main pre-existing condition, more than any other condition[1]
47.3%of reported COVID-19 deaths, on average across 12 OECD countries to July 2020, were of long-term care home residents, who made up 0.9% of the population[2]
25.7%rise in deaths in 2020 compared with 2019 among US Medicare enrollees aged 65+ with dementia, against 12.4% for those without[3]

Dementia was the condition most often found alongside COVID-19 deaths

England and Wales give the clearest national picture, because the Office for National Statistics (ONS) analysed every death certificate that mentioned COVID-19 for the other conditions recorded with it. Of deaths involving COVID-19 between March and June 2020, 91.1% had at least one pre-existing condition. Dementia and Alzheimer disease was the most common main pre-existing condition, in 12,869 deaths, or 25.6% of the total; counting every mention rather than only the main one, it appeared on 13,840 certificates, again more than any other condition[1].

Among people living in care homes, the share was higher still. Of 12,526 deaths of care home residents in England and Wales that involved COVID-19 between 2 March and 1 May 2020, dementia was the main pre-existing condition in 5,115, or 42.5%[4]. In Italy, dementia was also common among hospital deaths: in a representative sample of 2,621 people who died with COVID-19 in Italian hospitals, 415, or 15.8%, had dementia[5].

These figures describe who died, not the risk of dying, since dementia is common among the oldest people. Studies that compare people with and without dementia who caught the virus show the extra risk directly. A 2021 meta-analysis of observational studies found pooled mortality of 39% among older adults with dementia who had COVID-19, against 20% among those without, and 2.96 times the odds of death[6]. In US Medicare data on 13 million community-dwelling older people, those with dementia had 1.78 times the odds of dying within 30 days of a COVID-19 diagnosis, after adjustment, and the estimates were similar in 2021, once vaccines were available to older people[7].

Why the extra risk? The ONS noted that in advanced dementia the symptoms of COVID-19 "might be difficult to distinguish from their underlying illness, especially with the possibility of communication difficulties"[8]. People who cannot easily report a fever or breathlessness, or follow distancing rules, are harder to protect, and often live where infection spreads fastest.

Care homes, where many people with dementia live, carried a large share of the deaths

Deaths were concentrated in long-term care. The World Health Organization's July 2020 policy brief reported that in many countries more than 40% of COVID-19 deaths had been linked to long-term care facilities, "with figures being as high as 80% in some high-income countries"[9]. A comparison of 12 OECD countries using publicly reported data to 24 July 2020 found that care home residents accounted for an average of 47.3% of COVID-19 deaths, while making up 0.9% of the population. Their average COVID-19 death rate was 2,772 per 100,000 residents, against 122 per 100,000 older people living in the community: 24.2 times higher, ranging from 14.2 times in Germany to 73.7 times in Canada[2].

Share of COVID-19 deaths compared with share of the population, average of 12 OECD countries, to 24 July 2020Average across 12 OECD countries of each group's share of reported COVID-19 deaths and of the national population. Long-term care home residents: 47.3% of deaths, 0.9% of the population. People aged 65 and over living in the community: 44.7% of deaths, 18.2% of the population. People under 65: 8.0% of deaths, 80.9% of the population.Share of COVID-19 deathsShare of population0%25%50%75%100%Long-term care homeresidents47.3%0.9%Aged 65+ living in thecommunity44.7%18.2%Under 658.0%80.9%
Belgium, Canada, Denmark, France, Germany, Ireland, Italy, Netherlands, Spain, Sweden, UK and US; publicly reported confirmed and probable deaths, so recording practices differ between countries. Dementia status is not recorded in these figures. Source: Sepulveda, Stall & Sinha, JAMDA 2020.

These international figures do not record dementia directly, but dementia shaped where risk fell. In England, an analysis of every care home's notified deaths to 7 August 2020 estimated 29,542 excess deaths, 64.7% of them confirmed or suspected COVID-19; homes serving older people and/or people with dementia had 5.5 times the odds of COVID-19 deaths[10]. In Canada, long-term care residents made up 3% of COVID-19 cases but 43% of COVID-19 deaths, according to the Canadian Institute for Health Information's December 2021 review[11].

The concentration was not fixed. Across 11 countries with data, the care home share of COVID-19 deaths fell substantially in the second wave in 8, stayed the same in Denmark and Norway, and rose in Australia[12]. What happened in care homes depended on community transmission, testing, protective equipment and, later, vaccination, which are choices systems make. For care homes more broadly, see our study on dementia and care homes.

Deaths also rose among people with dementia who were never diagnosed with COVID-19

The pandemic's toll on people with dementia went beyond deaths certified as COVID-19. In England and Wales, the ONS found 5,404 more deaths than the five-year average with dementia and Alzheimer disease as the underlying cause, and no mention of COVID-19, in the weeks registered from the week ending 13 March to the week ending 1 May 2020: an increase of 52.2%. At the peak, in week 16 (mid-April), there were 2,775 such deaths, 220.8% of the usual number. Most occurred in care homes[8].

The ONS offered two explanations, without being able to separate them. Some of the rise could be undiagnosed COVID-19. But it also noted that care home residents had experienced changes to their usual routines, and that "adverse effects of such changes cannot be discounted as another possible explanation"[8].

The pattern was not confined to England. A 2022 meta-analysis of 11 studies found that mortality among people with dementia who did not have COVID-19 rose by 25% during the pandemic compared with earlier years[13]. In the United States, age- and sex-adjusted deaths from all causes among Medicare enrollees aged 65 and over were 25.7% higher in March to December 2020 than a year earlier among those with dementia, against 12.4% among those without. In the areas with the least COVID-19, there was no excess mortality among people without dementia, yet mortality rose 8.8% among people with dementia living in the community and 14.2% among those in nursing homes[3]. That is hard to explain by infection alone.

Rise in deaths in 2020 compared with 2019 among Medicare enrollees aged 65+, US, by dementia statusPercentage increase in age- and sex-adjusted mortality, March to December 2020 compared with March to December 2019, US fee-for-service Medicare enrollees aged 65 and over. Without Alzheimer disease and related dementias: 12.4%. All with Alzheimer disease and related dementias: 25.7%. Asian enrollees with dementia: 36.0%. Black enrollees with dementia: 36.7%. Hispanic enrollees with dementia: 40.1%.0%10%20%30%40%50%Without dementia+12.4%All with dementia+25.7%Asian, with dementia+36.0%Black, with dementia+36.7%Hispanic, with dementia+40.1%
Deaths from all causes, not only COVID-19. Dementia means a recorded diagnosis of Alzheimer disease or a related dementia in Medicare claims. Source: Gilstrap et al., JAMA Neurology 2022.

The rise was steeper for Asian (36.0%), Black (36.7%) and Hispanic (40.1%) enrollees with dementia[3]. Assisted living residents with dementia in the US, about 31% of residents, saw 33.4 more excess deaths per 100,000 than residents without dementia[14]. Our study of ethnicity and dementia looks at those inequalities more widely.

Death certificates under-count what happened

How many people with dementia died "of" or "with" COVID-19 depends heavily on what certifying doctors wrote, and on which part of the certificate researchers count. In the Veneto region of Italy, the share of deaths of people aged 65 and over that had dementia as the underlying cause stayed flat at about 7.0% in 2020. But the share that mentioned dementia anywhere on the certificate was 14.3% in 2020, against 12.9% across the whole 2008 to 2020 period, and deaths mentioning dementia were 15.5% above the expected level for men and 18.3% for women. Dementia-related deaths in nursing homes rose by 32% against the 2018 to 2019 average, at home by 26% and in hospitals by 12%[15]. The rise, the authors concluded, "could only be detected" by counting every mention.

The opposite can also happen. In Chile, crude death rates from dementia and Alzheimer's disease fell by 10% during the pandemic, which the authors attributed in part to possible under-reporting of dementia as a cause of death[16]. In England, the age-standardised rate of deaths with dementia as the underlying cause in June 2020 was 77.0 per 100,000, below the five-year average of 95.5[1]: when COVID-19 is recorded as the underlying cause, dementia moves to a contributing line, and counts based on the underlying cause alone fall. Our study of dementia as a leading cause of death explains these coding rules.

The fullest US count used every death certificate of a person aged 65 and over mentioning dementia as an underlying or contributing cause. It estimated 94,688 excess deaths with dementia in the first pandemic year, from March 2020 to February 2021, falling to 21,586 in the second[17].

Place of death, US, people 65+ with dementia on the death certificateExcess deaths, year 1 (Mar 2020–Feb 2021)Excess deaths, year 2 (Mar 2021–Feb 2022)
All places94,68821,586
Nursing home or long-term care34,259−22,050 (fewer than expected)
Home34,48728,804

Excess deaths are deaths above the number expected from January 2014 to February 2020 trends; source: Chen et al., JAMA Neurology 2023[17].

In the second year, excess deaths in nursing homes went below zero, while excess deaths at home stayed high[17]. People with dementia living at home, often supported by family, did not share in the improvement.

Less hospital care and less contact: the indirect harms

Part of the gap lies in the care people with dementia received when they were ill. In the Italian sample of hospital deaths, people with dementia had a "lower chance of receiving supportive therapies and intensive care approaches" than people without cognitive impairment[5]. In a Canadian population-based cohort of people aged 65 and over, residents of long-term care with dementia were 53% to 64% less likely to be hospitalised than residents without dementia. Among people not hospitalised for COVID-19, COVID-19 mortality was 32% higher for people with dementia in long-term care, and 477% higher for people with dementia living outside it, than for comparable people without dementia[18]. In Canada, physician visits to long-term care residents fell by 22% in early spring 2020, and transfers to hospital fell by 25% compared with before the pandemic[11].

Fewer transfers are not in themselves a failing: for many people in advanced dementia, care in a familiar place is what they and their families would choose, and our study of end-of-life care sets out the evidence. The concern is whether those decisions were made person by person, with good palliative care available, or by blanket rules under pressure. The data cannot settle that, but the differences are large enough to need explaining.

Then there was isolation. In a survey of 1,997 relatives of nursing home residents in the Netherlands, respondents were concerned that residents had increased loneliness (76%), sadness (66%) and lower quality of life (62%) during visiting restrictions[19]. For a person with dementia, a family member is often also a carer who helps with eating, reassurance and communication, so losing visits meant losing care as well as company. The ONS's caution that disrupted routines could have contributed to excess deaths in care homes[8], and the rise in deaths among people with dementia without COVID-19[13], point the same way, though no study can yet say how much of the excess isolation caused.

What the evidence asks of us

The pandemic showed how a public health emergency can fall hardest on people with dementia, and the variation between countries and settings suggests much of the harm was preventable. The evidence points to clear lessons:

  • Plan for long-term care from the start. WHO's 2020 policy brief set out 11 policy objectives for preventing and managing COVID-19 across long-term care, including home- and community-based care, not only care homes[9]. Pandemic plans should treat care homes and home care as part of the health system, with testing, protective equipment and staffing support.
  • Prioritise vaccination and protection. In Canada, 95% of long-term care residents in most jurisdictions had a first vaccine dose by 31 March 2021, against 3% of the general population, and infections and deaths among residents fell by over 90%[11]. In the US, excess deaths among people with dementia fell sharply in the second pandemic year, though that study did not test the reasons[17].
  • Keep families in. A panel of 21 US and Canadian long-term care experts recommended facilitating indoor and outdoor visits, allowing limited physical contact with precautions, and dedicating an "essential caregiver" for each resident[20]. Family carers of people with dementia should be recognised as part of care, not as visitors to be shut out.
  • Do not forget people at home. US excess deaths with dementia at home remained high in the second year[17]. Home care, community services and unpaid carers need support in any future emergency.
  • Count properly. Statistics offices should publish deaths that mention dementia anywhere on the certificate, not only as the underlying cause, and link death records to diagnosis registers, so the full toll is visible[15].
  • Close the gaps in care. Unequal increases in deaths by ethnicity[3] and lower access to hospital treatment[5] call for review of how decisions about treatment were made for people with dementia.

Language: this piece uses person-first language ("people living with dementia", "people with dementia"), as most dementia organisations and people with lived experience prefer, and uses clinical terms such as "Alzheimer's disease" or "mild cognitive impairment" only where a study, dataset or diagnosis refers to that specific condition.

Why we're publishing this

People living with dementia, and the families who care for them, bore a heavy share of the pandemic's losses, often out of sight, in care homes closed to visitors and in homes where support stopped. Their deaths were sometimes recorded under another cause, or folded into totals for "older people". Dementia organisations and carers' groups need clear, sourced figures to argue that this must not happen again: that the next emergency plan names people with dementia, keeps families involved in care, and counts every death. This study is part of our Dementia & Health research library.

How to read this data

The figures come from different kinds of source and are not directly comparable. The ONS figures for England and Wales are counts from death certificates; "main pre-existing condition" is an ONS-derived measure, and "underlying cause" and "any mention" give very different totals. The 12-country OECD comparison uses each country's own published counts of care home deaths, which were defined and collected differently, and does not record dementia. US figures come from Medicare claims (recorded dementia diagnoses, fee-for-service enrollees only) and from death certificates, where dementia is often left off. The meta-analyses pool observational studies with high heterogeneity, and odds ratios are reported as odds, not risks. Excess-death estimates depend on the baseline chosen. Most evidence covers 2020 and 2021 in high-income countries; we found little published data for low- and middle-income countries, and only the Chilean study from Latin America. We did not include Nordic register figures, which would strengthen a future update. Almost all figures are associations, not proof of cause.

Use this data

Free to cite with attribution to Understanding Aging. Charities, carers' groups, campaigners and journalists are welcome to reuse these figures and charts. For the underlying figures as a spreadsheet, get in touch.

Suggested citation: Understanding Aging (2026). Dementia and COVID-19: Who Died, Where, and What the Death Counts Missed. https://understandingaging.org/research/dementia-covid-19-deaths

Important: This article summarises published research and statistics for general information. It is not medical, care or financial advice and cannot be used to diagnose, treat or predict anything about an individual. If you have concerns about your own or someone else's memory or health, please speak to a GP or another qualified health professional.

Sources

  1. Office for National Statistics. Deaths involving COVID-19, England and Wales: deaths occurring in June 2020. ONS, 2020. ons.gov.uk/…/deathsoccurringinjune2020
  2. Sepulveda ER, Stall NM, Sinha SK. A comparison of COVID-19 mortality rates among long-term care residents in 12 OECD countries. Journal of the American Medical Directors Association, 2020. europepmc.org/article/PMC/PMC7486852
  3. Gilstrap L, Zhou W, Alsan M, Nanda A, Skinner JS. Trends in mortality rates among Medicare enrollees with Alzheimer disease and related dementias before and during the early phase of the COVID-19 pandemic. JAMA Neurology, 2022. europepmc.org/article/MED/35226041
  4. Office for National Statistics. Deaths involving COVID-19 in the care sector, England and Wales: deaths occurring up to 1 May 2020 and registered up to 9 May 2020 (provisional). ONS, 2020. ons.gov.uk/…/deathsinvolvingcovid19inthecaresectorenglandandwales
  5. Canevelli M, Palmieri L, Raparelli V, et al. Prevalence and clinical correlates of dementia among COVID-19-related deaths in Italy. Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring, 2020. europepmc.org/article/MED/33225041
  6. Saragih ID, Saragih IS, Batubara SO, Lin CJ. Dementia as a mortality predictor among older adults with COVID-19: a systematic review and meta-analysis of observational study. Geriatric Nursing, 2021. europepmc.org/article/MED/33824009
  7. Thunell JA, Ferido P, Zissimopoulos JM. COVID-19 hospitalization and mortality in community-dwelling racially and ethnically diverse persons living with dementia. Journal of the American Geriatrics Society, 2023. europepmc.org/article/MED/36637869
  8. Office for National Statistics. Analysis of death registrations not involving coronavirus (COVID-19), England and Wales: 28 December 2019 to 1 May 2020. ONS, 2020. ons.gov.uk/…/analysisofdeathregistrationsnotinvolvingcoronaviruscovid19…
  9. World Health Organization. Preventing and managing COVID-19 across long-term care services: policy brief, 24 July 2020. WHO, 2020. who.int/publications/i/item/WHO-2019-nCoV-Policy_Brief-Long-term_Care-2020.1
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  11. Canadian Institute for Health Information. COVID-19’s impact on long-term care. CIHI, 2021. cihi.ca/en/covid-19-resources/…/long-term-care
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  14. Hua CL, Cornell PY, Zimmerman S, Carder P, Thomas KS. Excess mortality among assisted living residents with dementia during the COVID-19 pandemic. Journal of the American Medical Directors Association, 2022. europepmc.org/article/MED/36065095
  15. Basso C, Barbiellini Amidei C, Casotto V, et al. Veneto Region dementia-related mortality during the COVID-19 pandemic: multiple causes of death and time series analysis. European Journal of Public Health, 2023. europepmc.org/article/MED/36847686
  16. Barría-Sandoval C, Ferreira G, Navarrete JP, Farhang M. The impact of COVID-19 on deaths from dementia and Alzheimer’s disease in Chile: an analysis of panel data for 16 regions, 2017–2022. Lancet Regional Health – Americas, 2024. europepmc.org/article/MED/38584874
  17. Chen R, Charpignon ML, Raquib RV, et al. Excess mortality with Alzheimer disease and related dementias as an underlying or contributing cause during the COVID-19 pandemic in the US. JAMA Neurology, 2023. europepmc.org/article/MED/37459088
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