About two decades ago, my father stood outside a Denver apartment and wouldn’t get in the elevator because he didn’t know what it was.
We were helping my brother move, and we were both hot and tired and hungry and had heavy boxes in our arms, and so when he said, “What’s this?” I snipped, “It’s an elevator, Dad,” and it wasn’t till we were standing inside that I thought, oh no no no and wait, what? and my stomach dropped along with the elevator.
It was one of the worst moments of my life. My geneticist-professor-brilliant father not knowing what an elevator was?
Soon after came the diagnosis of Alzheimer’s disease, which was confirmed by autopsy after his death. In the 12 years of his decline, my family experienced the complicated path of learning about the disease and caretaking. Most of the burden landed on my mother’s shoulders, though certainly all his children and extended family and friends were affected. The disease itself and its broader impacts on loved ones are complex, but from that confusing experience came some clarity and a few lessons.
September is Alzheimer’s Awareness Month—indeed, this year marks the 10th anniversary of this global awareness campaign. Specifically, September 21 is World Alzheimer’s Day, and in honor of my father, and all those who have been affected by this disease, I’ve paused to reflect on some lessons my father taught me.
First, the situation is bad, and we might as well face it. My father was a no-nonsense, direct kind of guy, and I think he would have stared hard at anyone who couldn’t face the facts. Dementia is a particularly difficult path to death, both for the afflicted and the caregivers, and the road ahead is truly dangerous: Globally, there are 50 million people with Alzheimer’s, and an estimated 152 million people worldwide will have dementia by 2050. An honest gaze needs to be directed at the complex ethical, legal, financial, and societal issues this disease raises, but three issues are clear and deserve immediate attention: 1) funding for research, 2) pushing for legislation that will change policies regarding health care options and coverage, and 3) a general reassessment of our decisions and culture around end-of-life care.
First, the money. Alzheimer’s research is projected to receive 3.2 billion from the National Institutes of Health in 2021, and although that is up from previous years, funding falls far below that dedicated to other diseases. Indeed, although Alzheimer’s deaths are nearly on par with cancer deaths, Alzheimer’s receives a fraction of the funding—not that I want to decrease any funding for cancer.
The personal toll is exceedingly painful—my family’s relationship and my personal health deteriorated alongside my father—but in terms of economics alone, Alzheimer’s is the most expensive disease in America. For every $100 that the NIH spends on Alzheimer’s research, Medicare and Medicaid spend $28,000 caring for those with the disease. Donations to the Alzheimer’s Association, which is the largest national voluntary health organization, is always an option; they advocate for policy change and the Colorado chapter offers excellent support groups and educational seminars. Contacting your legislators is another path.
Secondly, our health care system suffers from a disease itself, one with a complex pathology and symptoms. But briefly: 75% of Alzheimer’s patients receive at-home care; very few can afford private health care, and those who can end up spending their life savings; two-thirds of caregivers are women; and caregivers report more financial, emotional and physical difficulties than those providing care to people without dementia. Of the lifetime cost of providing care to someone with dementia, 70% is borne by families.
We need to overhaul our end-of-life health care altogether, namely for-profit health care models, which have made community-based care and services cost prohibitive for most Americans. You might have heard of those cool-sounding villages in Oslo and France, but I think most of us would welcome something far simpler—basics such as affordable and safe assisted living and where health care workers are paid fairly. Basically, places where everyone is treated with kindness and grace. Such a thing is possible, if profit was not the main goal.
Finally, and perhaps most controversially—hear me out—I think we must rethink our approach to death in general, and make medical decisions accordingly. How and when do we differentiate between saving a life and prolonging a dying? This is part of a larger conversation, but I’ll never forget when that conversation started for me. When I was researching a death-positive book, a doctor in New Zealand eloquently described how flabbergasted he was by American’s do-everything-to-prolong life approach. Both doctors and regular folk needed to learn to judiciously say no to some medical intervention, he argued. Since then, “Debitum naturae” has been my guiding principle–our debt to nature is to die. Death is a natural part of life, and we live in a culture that guilts us into believing otherwise.
I wish for so much. I wish my gentle and kind father were still alive. I wish the disease didn’t exist. I wish my dad had always known what an elevator was. I wish for more funding, different health care models, and a death-positive, communicative culture.
My hope is that we use this month to renew interest and clarity on this disease and the ethical and practical decisions that surround it, whether by donating, volunteering, advocating and contacting our legislators, and by making our own end-of-life plans, both legal and personal. Most of all, I hope we can look with a clear-eyed view at the future, and not avert our gaze, lest our stomachs drop with surprise someday.
Laura Pritchett, PhD, is an author and lifelong Coloradan. Her novel “Stars Go Blue” is based on her experience with her father. www.laurapritchett.com
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