COVID-19 deaths disproportionately affecting people with dementia, targeted response urgently needed

Press release on COVID-19 deaths and dementia

The impact of Covid-19 on people with dementia ‘truly shocking’ says Alzheimer’s Disease International at start of World Alzheimer’s Month.

  • Striking Covid-19 mortality data in people with dementia emerging:
    • In Canada 85 percent of all Covid-19 deaths are in long term care, where two thirds of people have dementia
    • 26 percent in the United Kingdom
    • 20 percent in regions of Italy
  • Estimated up to 75 percent of all Covid-19 care home deaths are people with dementia

1 September 2020 – The Covid-19 pandemic is leading to extremely high death rates amongst people with dementia globally. Emerging data has revealed that in Canada up to two thirds of all Covid-19 related deaths are people with dementia, in the UK 26 percent, and in regions of Italy 20 percent.

Global dementia organisation, Alzheimer’s Disease International (ADI), says the global community must come together to form an action plan to protect those with dementia from the worst ravages of Covid-19, and that that further data on dementia-Covid mortality is urgently needed.

“We need transparency. Governments must incorporate dementia into Covid response plans to protect the millions of people impacted by dementia globally,” says ADI CEO Paola Barbarino, “They deserve dignity, and we need justice for those who have sadly died.”

In a global collaboration, The London School of Economics and University College London live report, Impact and mortality of COVID-19 on people living with dementia: cross-country report, which ADI researchers contribute to, is being updated regularly with the latest data and information from international researchers.

According to data from the report, up to 75 per cent of Covid-19 deaths globally in care facilities are those with dementia as an underlying condition. Age is the biggest risk factor for dementia and older people are the most at risk group for Covid-19, with 86 percent of all Covid-19 deaths are among people aged 65 and over.

People with dementia in Long Term Care are also being disproportionately impacted and severely disrupted during the pandemic with the condition exacerbating the impact. Access to health and care professionals has been limited, globally face to face support has been withdrawn, diagnosis has been interrupted and research disrupted.

ADI is calling on governments to collect, analyse and publish key data, including mortality data and disruption to diagnosis, disaggregated by age, gender and the presence of pre-existing conditions, to help find critical solutions to mitigate risks and find solutions to a return to support for people living with dementia.

Barbarino says emerging data, including findings from the report, are extremely worrying and is calling on governments to act immediately, saying we must not just accept that Covid-19 causes high rates of mortality amongst people with dementia.

“People with dementia are being disproportionately impacted by this pandemic and are in danger of being forgotten. Now more than ever we need to talk about dementia,” continues Barbarino. “At the start of World Alzheimer’s Month, we are calling on governments to capture and publish transparent data and to increase support to protect vulnerable people with dementia.”

Cognitive impairments associated with dementia exacerbate many of the challenges associated with Covid-19 and the resultant social distancing and lockdown measures being put in place to manage the pandemic. This includes heightened complications around being denied access to carers and to family, increased anxiety caused by isolation, and in care and hospital settings, recognition issues around the wearing of PPE.

Barbarino says that disrupting care can be catastrophic for people living with dementia.

“Many of our member associations globally have had to cease face-to-face dementia care and support, such as day-care centres and care at home. Diagnosis has also been interrupted with lack of access to healthcare professionals and specialists,” says Barbarino. “The impact of the pandemic period and isolation on cognitive decline for people with dementia means that for many their condition will deteriorate and in turn there will be an increased need for support afterwards.

A global series of webinars, led by ADI throughout the pandemic, revealed many people living with dementia have had their basic human rights breached, including restricting access to healthcare and support. Many governments implemented bans on visitors to health and care facilities, which has led to many people living with dementia being disconnected from essential support systems.

Barbarino says that alarmingly there have been incidents of triaging Covid-19 patients based on age or condition, without access to transparent decision-making guidelines, leaving elderly communities and especially those with dementia, at risk of being declined treatment.

“Governments must protect the rights of people with dementia, their right to access healthcare, treatment and support and, especially at this time, to palliative care,” says Barbarino. “Triage decisions must be based on rights, not on age or condition. We understand Covid-19 has put immense pressure on health systems globally, but we simply cannot let people with dementia slip through the cracks.

Kate Swaffer, Chair, Co-Founder and CEO of ADI’s partner Dementia Alliance International, the group made up of people living with a dementia diagnosis said:

“In 2020, the rest of the world suddenly experienced what people with dementia and their families experience on a daily basis after diagnosis, such as isolation, distancing (from many family and friends), fear, anxiety and stigma. Let’s hope that post COVID the world takes this new learning, and finds ways to reduce the stigma, loneliness and isolation we experience, and helps change attitudes towards dementia.”

September is World Alzheimer’s Month and 2020 marks the beginning of the World Health Organization’s Decade of Healthy Ageing. Barbarino says that the Covid-19 crisis has highlighted not only a lack of preparedness for the pandemic but importantly the ongoing global lack of preparedness for dementia, one of the biggest health and social care crises of this and future generations.

“There’s a clear link between governments who acted quickly to limit the spread of Covid-19 and lower mortality rates from the virus,” says Barbarino. “We need governments to act immediately to protect our vulnerable communities. Governments must not waiver from their commitments identified in their national dementia plans or in developing plans, in line with the WHO Global action plan on dementia, which 194 WHO Member States ratified.”

“Now more than ever we need to be talking about dementia,” continues Barbarino. “Governments need to act quickly to manage health crises, but the real lesson is that much more preparation is needed not only for pandemics, but also for dementia.”

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