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Story | Research
20 May 2020

Alzheimer’s chief says dementia sufferers at risk of discrimination as QF/WISH place mental health in spotlight

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People with dementia are seen as vulnerable amid the COVID-19 pandemic. 

Photograph: Orawan Pattarawimonchai/Shutterstock

Paola Barbarino, CEO of Alzheimer’s Disease International, says the COVID-19 pandemic has highlighted the unique needs of those living – and dying – with dementia.

People with dementia and those who care for them are being pushed to the extreme by the COVID-19 pandemic, the CEO of Alzheimer’s Disease International has warned while participating in a global discussion on mental health hosted by Qatar Foundation and the World Innovation Summit for Health.

A stark picture painted by the coronavirus crisis has this month been revealed in a report by the UK’s National Health Service, which showed that 18 percent of those who have died in hospital with COVID-19, and 42 percent of those who died in care homes for the elderly after testing positive for the disease, had dementia.

Paola Barbarino, CEO of Alzheimer’s Disease International. 

Paola Barbarino, who heads the UK-based organization dedicated to fighting Alzheimer’s disease, was among the experts to give their insights on the impact of the pandemic on global mental health in an online edition of the Education City Speaker Series, and says these statistics reflect exactly how vulnerable those with the dementia are to disease, death – and discrimination.

“The report reveals the depths of vulnerability that those with degenerative neurological conditions such as dementia are prone to,” she said. “It also gives us a glimpse of the many victims who had dementia. And there may be more - victims who had dementia, but were not registered at the hospital they were admitted to as having the diseases.

Often patients with dementia cannot verbally express physical discomfort, and this applies to the symptoms of the pandemic as well. The result is that by the time help is sought for, and arrives, it is often too late

Paola Barbarino

“Often patients with dementia cannot verbally express physical discomfort, and this applies to the symptoms of the pandemic as well. The result is that by the time help is sought for, and arrives, it is often too late. On the other side of the spectrum, we have heard of reports of extreme end-of-life decisions being made solely on the fact that an elderly patient afflicted by the virus had dementia – even when they had no other underlying health conditions.

“There have also been situations where patients who were previously living alone opted to stay with immediate family members, as their regular caregivers were forced to self-isolate. This puts enormous pressure on their children, who often have to juggle caring for a parent with dementia, working from home, and schooling their own children. The mental agility of such caregivers is often stretched to breaking point.”

Qatar Foundation’s approach to such topics such as dementia is nuanced with sensitivity and courage.

Paola Barbarino

Patients with Alzheimer’s benefit from routine, but amid COVID-19, that routine can be snatched from them, leaving them confused and scared. This leads to decreased cognitive capacity, and, in the case of advanced dementia, rapid physical and mental deterioration.

Patients with advanced dementia are also more likely to move or wander out of their residences. This adds another layer of risk when it comes to lockdown measures

Paola Barbarino

“Even simple precautions, such as wearing a mask, can be overwhelming for such people,” Barbarino notes. “Patients with advanced dementia are also more likely to move or wander out of their residences. This adds another layer of risk when it comes to lockdown measures.

“With these strict measures in place, governments are imposing fines and penalties on those who violate these precautions. So when a patient with dementia accidentally wanders out of their homes into public places without wearing a mask, they are often reprimanded, resulting in unfortunate outcomes.”

While countries such as France and Taiwan have stepped forward with specific interventions for those with dementia during the pandemic, Barbarino says that much of the rest of the world has been slow to respond. According to her, this is why the work carried out by initiatives such as the World Innovation Summit for Health (WISH) is crucial.

“Entities such as WISH tackle issues which most organizations prefer to shy away from,” she says.

“Qatar Foundation’s approach to such topics such as dementia is nuanced with sensitivity and courage – it has the courage to explore issues that need to be dealt with from a humanitarian perspective. The Education City Speaker Series webinar on mental health is a case in point.

“What’s commendable is that WISH’s interest and involvement in such issues is not a flash-in-a-pan; it doesn’t view such topics merely as one-off crowd-pullers at conferences. Instead, WISH, and other QF entities, dedicate themselves to truly understanding and investigating such concerns from ground-level up. That’s exactly what helps organizations like us get our message out effectively.”

According to Paola Barbarino, the “mental agility” of those who care for people with dementia is “often stretched to breaking point” by the pandemic.  Photograph: tong patong/Shutterstock

Alzheimer’s Disease International submitted a report with urgent recommendations for the World Health Assembly, calling for governments across the world to urgently recognize – and address – the unique needs of people with dementia amid the current crisis. As a part of those efforts, the organization has also launched an online initiative - www.alz.co.uk/donate - to mobilize funds for dementia patients and their caregivers.

Barbarino also says the pandemic has inadvertently resulted in the media highlighting issues which organizations such as hers have been trying to bring to the forefront

“The media have been nimble in presenting data, and governments have been forced to take notice,” she says. “It’s been a bit like peeling back the layers of an onion and getting to the core. The issue cannot be skirted anymore.”

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