Annual statistics report COVID-19 as the UK’s biggest killer, moving dementia to second for the first time since 2015. But deaths from dementia remain high compared with other major diseases. We explore why.
This article was first published on 6 September 2019 and most recently updated on 28 July 2021.
Annual death statistics for England and Wales, released by the Office for National Statistics (ONS) in 2018, showed the number of people dying with dementia is steadily increasing year on year.
However, the latest report, released in early July 2021, shows the number of people dying with dementia has reduced.
Due to the pandemic, COVID-19 was the leading cause of death in England and Wales in 2020. Although numbers of people dying with dementia may appear lower at first glance, this is not necessarily the case.
What is the link between dementia and deaths involving COVID-19?
While the most recent ONS report focuses on the primary cause of death, it also provides information on the underlying pre-existing conditions people who died of COVID-19 may have been living with, such as dementia.
Of the 73,766 people who died from COVID-19 in 2020, almost 25% (18,420) also had Alzheimer’s disease or another disease that causes dementia.
Summing together the deaths caused by dementia and the number of people with dementia who died from COVID-19 accounts for 14.5% of total deaths in the UK in 2020.
Additionally, the number of people getting diagnosed with dementia in England decreased during coronavirus, and it's estimated that similar trends occurred in the other UK nations.
This reduced rate of diagnosis also impacts the recording of dementia or the diseases that cause it on death certificates. Although dementia is not the leading cause of death in England and Wales currently, high numbers of people with dementia still sadly passed away last year.
This is in part due to COVID-19 disproportionately impacting people with dementia combined with the high numbers of deaths from dementia-causing diseases, even with decreased diagnosis rates.
At a glance: the top 5 leading causes of death in England and Wales in 2020
In 2020, the top five causes of death were:
- COVID-19 (12.1% of all deaths)
- Dementia and Alzheimer’s (11.5% of all deaths)
- Ischaemic heart disease (9.2% of all deaths)
- Cerebrovascular disease (4.9% of all deaths)
- Lung-based cancers (4.7% of all deaths).
For deaths with a primary cause attributed to dementia, the 2020 figure shows a decrease in percentage from 12.5% in 2019 and 12.8% in 2018. This reduction has likely been impacted by coronavirus-related dementia deaths and a decreased diagnosis rate.
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Why did COVID-19 disproportionately impact people with dementia in 2020?
It is estimated at least a quarter of people who died from COVID-19 in 2020 also had a dementia diagnosis.
There are several possible reasons why people living with dementia were at increased risk of contracting COVID-19, including their age and any underlying health problems.
Additionally, close care required for people living with advanced dementia makes social distancing a challenge. Having to adapt to new behaviours which decrease the risk of infection, like washing hands more often and mask-wearing is particularly difficult for people with dementia.
People with dementia were also isolated from loved ones during the pandemic. The effects this had on individual well-being, which can impact physical health, is yet to be fully understood.
Why are the diseases which cause dementia still a leading cause of death in the UK?
There are a few reasons why dementia remains a leading cause of death in England and Wales.
1.) Overall, more people are getting a dementia diagnosis
Greater awareness and understanding of dementia mean more people are now receiving a diagnosis. Even with these levels decreasing during the pandemic, they are still higher than they were in the past.
Before the pandemic, it was estimated that two-thirds of people with dementia in the UK have been diagnosed which is up from only 40% of people in 2012.
Alzheimer's Society has long campaigned to increase the number of people with dementia receiving a diagnosis so they can gain access to vital treatments and support services.
Especially after seeing diagnosis rates decline during the pandemic, we have been campaigning for funding to ensure diagnosis levels get back up to where they were before.
2.) More people are living longer in the UK
Due to medical advances, more people than ever are surviving heart disease, strokes and many cancers.
Age is the biggest risk factor for dementia, so as more people live longer, the number of people developing dementia is increasing.
Dementia is a life-limiting condition and more research is needed to find treatments that can slow or stop the diseases that cause dementia from worsening.
3.) Changes in the way UK deaths are recorded
Reliable death records are important to follow changes in the impact of diseases and to decide priorities for medical research. In 2011, the ONS made changes to the way deaths due to dementia are recorded to better reflect guidance from the World Health Organisation (WHO).
Now if a person dies with dementia, doctors can report it as the main cause of death on their death certificate. Previously, the immediate cause of death would be listed, such as a fall or an infection like pneumonia.
But in many cases, these illnesses are a result of underlying dementia causing increased frailty, a weakened immune system, or problems with swallowing.
The ONS also updated their coding system so that vascular dementia would be reflected in the dementia category instead of the stroke (cerebrovascular disease) category.
Additionally, if people with dementia die from other causes – such as COVID-19 – they are not counted as dying from dementia.This reduces the numbers recorded for people with dementia who have passed away.
This is important to consider if rates of deaths caused by dementia appear to fluctuate because it might not necessarily be an indicator of a change in the number of deaths.
How does the number of deaths from dementia compare to other diseases in the UK?
Under the revised methods, the ONS groups all of the diseases causing dementia – like Alzheimer’s disease and vascular dementia – together into one category.
This contrasts to conditions like cancer, which is separated out by disease type. Deaths from diseases such as lung cancer, breast cancer, and pancreatic cancer are all analysed separately. Lung cancer caused the most deaths of all cancers in 2020, recorded on 4.7% of death certificates.
However, if all the different types of cancer were grouped together, the picture would look different. For example, cancer would have been responsible for 1 in 4 UK deaths in 2017 if this was the case.
The grouping of diseases therefore influences how these conditions rank in the causes of deaths in the nations of the UK.
This graph shows the leading causes of death in women in England and Wales in 2018 with all types of cancer combined. (Age-standardised death rates per million women).
Urgent action is needed for dementia research
Although things are changing, current death records are still a big underestimation of the true numbers of people dying with dementia - particularly during the pandemic.
Whichever way you cut the numbers, dementia is rising. It is a major health crisis.
With an ageing population, no approved treatments to slow it and an overstretched care system, we need to take action to tackle dementia in the UK.
We need to boost investment into research for treatments that can slow or prevent dementia. Research is also critical to find effective ways to care for people with dementia from diagnosis through to the end of their lives.
Medical progress has saved and improved the lives of thousands of people with heart disease, stroke and cancer.
Now it is time to see the breakthroughs in dementia too.
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