About two decades ago, my dad stood outside a Denver apartment and didn’t want to get on 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 we had heavy boxes in our arms, so when he said, “What is this?” I cut: “It’s a elevator, daddy ‘, and it wasn’t until we stood inside that I thought, ah no no no and wait what? and my stomach fell with the elevator.

It was one of the worst times of my life. My brilliant geneticist-professor-dad didn’t know what an elevator was?

Soon after came the diagnosis of Alzheimer’s disease, which was confirmed by autopsy after his death. During the 12 years of its decline, my family went through the complicated path of learning about illness and care. Most of the burden fell on my mother’s shoulders, although certainly all of her children, extended family and friends were affected. The disease itself and its wider impacts on loved ones are complex, but out of this puzzling experience has emerged some clarity and some lessons.

September is Alzheimer’s Disease 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 touched by this disease, I paused to reflect on some lessons that my father taught me.

First, the situation is bad, and you might as well face it. My dad was a straightforward, straightforward guy, and I think he would have looked hard at anyone who couldn’t face the facts. Dementia is a particularly difficult path to death, both for the afflicted and for caregivers, and the road ahead is truly dangerous: in the world, there are 50 million people with Alzheimer’s disease, and an estimated 152 million people worldwide will be living with dementia by 2050. An honest look must be directed to the complex ethical, legal, financial and societal issues that this disease raises, but three issues are clear and deserve attention. immediate attention: 1) funding research, 2) promoting legislation that will change policies regarding health care options and coverage, and 3) a general reassessment of our decisions and culture regarding care end of life.

First, the money. Alzheimer’s disease research is set to receive $ 3.2 billion from the National Institutes of Health in 2021, and although this is up from previous years, the funding is far less than that spent on other diseases. . Indeed, although Alzheimer’s disease deaths are almost the same as cancer deaths, Alzheimer’s disease receives a fraction of the funding — not that I want to cut all cancer funding.

The personal toll is extremely painful – my family relationships and my personal health have deteriorated alongside my father – but in economic terms alone, Alzheimer’s disease is the most expensive disease in America. For every $ 100 that the NIH spends on Alzheimer’s disease research, Medicare and Medicaid spend $ 28,000 to treat people with the disease. Donations to the Alzheimer’s Association, which is the largest national voluntary health organization, are always an option; they’re advocating for policy change, and the Colorado chapter has some great support groups and educational seminars. Contacting your legislators is another way.

Second, our health system itself suffers from a disease, the pathology and symptoms of which are complex. But briefly: 75% of Alzheimer’s patients receive home care; very few can afford private health care, and those who can end up spending their savings; two-thirds of caregivers are women; and caregivers report more financial, emotional and physical difficulties than those caring for people without dementia. Of the lifetime cost of caring for someone with dementia, 70% is borne by families.

We need to completely overhaul our end-of-life health care, the for-profit models of health care, which have made community care and services prohibitive for most Americans. You might have heard of these cool-sounding villages in Oslo and France, but I think most of us would favor something much simpler, basics like affordable and safe assisted living. and where health 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 objective.

Finally, and perhaps most controversially – listen to me – I think we need to rethink our approach to death in general and make medical decisions accordingly. How and when to tell the difference between saving a life and prolonging a death? It’s 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 New Zealand physician eloquently described how flabbergasted he was at American behavior.all-Approach to prolong life. Doctors and ordinary people had to learn to say wisely no to 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 prompts us to believe otherwise.

I wish so much. I wish my sweet and kind dad was still alive. I wish the disease didn’t exist. I wish my dad had always known what an elevator was. I want more funding, different models of health care, and a culture of positive communication for death.

I hope we will use this month to renew interest and clarity on this disease and the ethical and practical decisions that surround it, whether through donating, volunteering, advocating and reaching out to our lawmakers. , and making our own end-of-life plans, both legal and personal. Above all, I hope that we can look to the future with clarity and not look away, lest our stomachs fall in surprise one day.

Laura Pritchett, PhD, has been a lifelong writer and coloradian. Her novel “Stars Go Blue” is based on her experience with her father. www.laurapritchett.com

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