(LEX 18) — This week marks the annual Alzheimer's Impact Movement (AIM) Advocacy Forum, when advocates from around the country lobby their respective congress members to support measures to curb Alzheimer's and other dementia.
Although this year's forum has been restricted to a virtual format, advocates say there is a lot of work to be done as the country emerges from the pandemic.
According to the Alzheimer's Association, there were at least 42,000 more deaths from Alzheimer's and other dementia in 2020 compared with averages over the previous five years. That represents a 16% increase. In Kentucky, there were 921 more deaths than expected from Alzheimer's and dementia, according to the organization.
"We started noticing really remarkable deterioration mentally and physically," Beth Hilliard said, referring to her father, 86, who died in December
Hilliard said her father, Irvin Rice, moved into a memory care facility in Louisville in August 2019, around the time he began displaying signs of Alzheimer's. Rice, who had once been a prolific writer and avid musician, was still able to play golf even as the disease had progressed. But during the pandemic, Hilliard said he was not able to engage in many physical activities. Over time, he grew agitated.
"He was like, 'When do I get to go golfing again? When do I get out of this prison?'" Hilliard recalled. "I don't think he ever understood COVID."
Last November, Rice contracted COVID-19, but did recover.
A month later, though, he died. His daughter believes that social isolation heavily contributed to his decline.
"That fear and anxiety unfortunately can rapidly increase the cognitive decline," explained Mackenzie Longoria, the director of public policy for the Greater Kentucky and Southern Indiana chapter of the Alzheimer's Association.
Longoria said there may be several reasons to explain the spike in excess deaths in 2020, including the overburdened healthcare system, staffing shortages in long-term care facilities, and the high prevalence of Alzheimer's and other dementia in settings that were disproportionately affected by the pandemic.
A report produced by the Alzheimer's Association in March concluded that "this data indicate that the true burden of the COVID-19 pandemic is significantly larger than the confirmed COVID-19 deaths."