Alzheimer's Disease International, the global body for more than 100 national Alzheimer's and dementia associations around the world, has reflected on the global pandemic and the profound effect it had on the lives of people with dementia over the last year.
Paola Barbarino, Chief Executive Officer of Alzheimer's Disease International (ADI), says that people living with dementia have been the most disproportionately affected group during the COVID-19 global pandemic.
While there have been negative impacts, including studies showing that the virus itself has a disastrous effect on people with dementia as did the associated lockdowns and restrictions, there have been a lot of positive repercussions. Examples include dementia advocacy groups being able to lobby their governments for funding and more innovative health care solutions for people with dementia.
"COVID-19 has had a profound impact on people living with dementia across the globe. In countries that are publishing data, studies have shown that of the people who have died from COVID-19, globally 25 percent of these were people with dementia, and a figure of 45 percent in Australia. So it’s evident that this vulnerable group has been disproportionally affected," explains Ms Barbarino.
"... While the pandemic has presented many painful challenges for people with dementia, it has also provided an opportunity for dementia associations to continue to vehemently and coherently lobby governments globally to do more for dementia patients.
"Continued advocacy is required and expected to continue, ensuring that people with dementia are prioritised and not overlooked.
"Our hope is that future health challenges, such as another infectious disease, won’t pose as great a risk to people living with dementia if lessons from this pandemic are heeded, that governments factor in the lessons of this pandemic in their national dementia plans, and those with dementia are prioritised from the beginning."
Some of the worst outcomes of the global pandemic were the effect of restrictions and lockdowns on people living with dementia.
Ms Barbarino explains that the coronavirus likely had a cognitive and neurological impact on those diagnosed with dementia, which is a big issue as anything that diminishes one's cognitive reserve and resilience can result in the acceleration of neurodegenerative processes, leading to symptoms of dementia showing earlier.
This means COVID-19 may have increased the risk of developing dementia for those already at risk or increased the rate of development in those who already had preclinical dementia.
Many countries dealt with COVID-19 in different ways, however, countries that introduced lockdowns and restrictions resulted in reduced face to face dementia care and support, including day care centres and care at home.
Ms Barbarino believes there was also a reduction in critical dementia diagnosis due to the lack of or reduced access to healthcare professionals.
"It’s hard to say at this stage, as dementia diagnosis and care statistics for the past year are yet to be reported on. We speculate that the prevalence of dementia in the global population will initially drop due to the horrific increase in mortality of those with dementia throughout the pandemic," says Ms Barbarino.
"Furthermore, the disruption to diagnosis and care caused by the pandemic will also likely contribute to this drop as there have simply been fewer people going to receive medical check-ups for non-COVID-19 conditions over the past year.
"However, due to the neurological effects of COVID, the delay to diagnosis, and cognitive decline of dementia patients during this period, it is expected that these rates will increase in dementia incidence in the future."
Other issues that arose for older people with dementia include anxiety caused by isolation, cognitive decline as a result of lack of interaction, confusion around recognition when people used Personal Protective Equipment (PPE) to protect themselves from COVID-19, and denied or reduced access to family and carers.
Ms Barbarino says one positive solution to these issues was through telehealth or telemedicine initiatives that became a useful option for continued healthcare among people with dementia.
These practices have been used in the past, but not to the extent as to what occurred during the height of the pandemic in Australia, where medical professional found it a useful option to providing necessary health care to patients or family and friends used it as a way to keep in contact with their older loved ones with dementia.
"As dementia associations around the world adjust to regulations that affect how services are delivered, new innovative ways are being introduced to help dementia patients," says Ms Barbarino.
"Associations across the world have implemented new programmes around remote caregiving throughout lockdown to get creative and continue providing services."
Ms Barbarino adds that dementia associations across the world were at the forefront when advocating for people with dementia to be a priority group and among the first to receive the COVID-19 vaccine, and for dementia patients to receive better health care during the pandemic and into the future.