 | By Max Strasser |
What is it like to learn anew every day that you are living through a pandemic? |
That may be unimaginable for you. But for some people with dementia, it's their reality. And that's what Katie Engelhart sought to illuminate in her cover story for this week's Sunday Review. "I wanted to understand what it feels like to live through this terribly disorienting time inside a mind that is already deeply disoriented," she writes. |
Katie, a freelance journalist who covers end-of-life issues, spent many hours talking on the phone or on Zoom to people with dementia across the United States. She also talked to geriatricians, social workers, nursing aides and caregivers. Her reporting paints a heartbreaking picture of people struggling through this incredibly difficult period: dementia patients who fear their mask-wearing nurses; people in care homes who are separated from their families by social distancing rules; a woman who worries she is losing her last good years to lockdowns; a wife who covered her front door with wallpaper that looks like a bookshelf to stop her husband from wandering outside. |
Many people with dementia have experienced a collapse of the routines that give structure to their lives. They are confused, they are frustrated and they are suffering. But they are not alone. There are millions of people in similar situations. Maybe you have a parent or a spouse or a sibling or a friend with dementia. Maybe it will be helpful or meaningful for you to know that you are not alone, too. |
This essay can't answer the question of what it feels like to live with dementia during the pandemic — only those who experience it can do that — but it does draw attention to how difficult it is to provide care for dementia patients, how isolated and alone they can be, and how America's health care system is so often failing them, sometimes in the process of trying to keep them safe. "It's essentially like, we are going to keep you safe, even if it kills your spirit," one geriatrician said. |
By 2050, Katie writes, "the United States is projected to have 13.8 million people with Alzheimer's inside its borders (in addition to people with other forms of dementia), with nearly one million new cases every year." The coronavirus pandemic will be long over by then, but many of the deeper issues discussed in this essay won't be. |
Here's what we're focusing on today: |
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