June is Alzheimer's and Brain Awareness Month, a time not of celebration but of bringing greater awareness to this major public health issue. According to the Centers for Disease Control and Prevention (CDC), in the United States alone, close to 6 million people have Alzheimer disease and other related dementias. As the past few years of the COVID-19 pandemic have shown us, we can become numb to statistics, but we must remember that these numbers are people—grandparents, parents, friends. My maternal grandmother is one of them.
It started off slowly enough that it seemed like natural signs of aging. She had always been a little forgetful. There was the year we went for Thanksgiving, for instance, and she had forgotten to turn the oven on. But although she seemed to have small memory lapses, she was largely independent as a widow in her 80s living alone. She had friends and joined clubs. She went to church every Sunday. She traveled to Florida for the winters, and even to Europe one year.
But eventually the small signs gave way to bigger ones. Leaving the car running in the parking lot with the door open. Calling to say she didn't remember how to get home from where she had driven. And then the more heartbreaking ones: opening Christmas presents over and over and acting surprised each time. Not knowing whose home she was in when she visited. Forgetting to call my mother on her birthday. Forgetting that her husband, my grandfather, was dead. Eventually, in some warped version of hot potato, she was moved into assisted living, and then to the memory unit, and then to a dementia unit in a full-fledged nursing home. With each move she lost a little bit more of herself.
Now at an amazing 95 years of age, her body is physically healthy (she even survived COVID-19), but she is trapped in a haze. Sometimes, like when I bring my kids to see her, she brightens up, says something that makes sense, like “How cute” or “Put your sweater on, it's cold.” An innate maternal instinct shining a light through the fog of her dementia. Mostly she is no longer verbal, cannot eat solid foods, and spends her days dozing in a chair. The disease has robbed her of who she is piece by piece, year by year. She is alive, but we already mourn her.
Alzheimer disease and other dementias are not only devastating at an individual level but place an incredible burden on the health care system as well as on family caregivers. The American Journal of Managed Care estimated total health care costs for the treatment of Alzheimer disease in 2020 at $305 billion. According to the CDC, the majority of people with Alzheimer disease and related dementias are receiving care in their homes, with more than 16 million Americans providing more than 17 billion hours of unpaid care for family and friends with these disorders each year. These burdens will only get harder as the population ages.
In this month's In the News, our lead story offers an update on where we are with Alzheimer disease and other dementias in terms of risk factors; diagnostic tests; treatments; and new perspectives on care, including examples of activities for cognitively impaired individuals (done in a safe setting), such as music, baking, and dancing, that can help mitigate escalating behaviors. This can be seen on our cover this month, where an art class participant works on a painting at the Louis and Anne Green Memory and Wellness Center at Florida Atlantic University in Boca Raton. This nurse-led center is a state-designated memory disorder clinic that supports the needs of individuals with Alzheimer disease and other related dementias and their family caregivers. In addition to offering comprehensive memory and wellness evaluations; counseling; support groups; community outreach and education; and an adult day program where participants can do activities like music, yoga, games, and crafts, the center also functions as an academic environment for nursing students (for more, see On the Cover).
On June 20—the summer solstice and longest day of the year—the Alzheimer's Association is urging people from across the world to “fight the darkness of Alzheimer's through a fundraising activity of their choice.” To learn more and see what actions you can take, visit www.alz.org.