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People with dementia face risk of discrimination, warns ADI chief

People with dementia face risk of discrimination, warns ADI chief

Tribune News Network
Doha
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 (ADI) 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, who heads the UK-based organisation 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 said 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. 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,” she said.
“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.”
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.
“Even simple precautions, such as wearing a mask, can be overwhelming for such people,” Barbarino noted. “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 said 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.
She said, “Entities such as WISH tackle issues which most organisations prefer to shy away from. 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.”

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