More than a decade ago, my father stood outside a Denver apartment and wouldn’t get in the elevator because he didn’t know what it was. That was my first clue that something was amiss — and soon after came the diagnosis of Alzheimer’s. Since then, it’s been a complicated path of understanding the disease and the man he has become, but from that confusion came some clarity.
September was the month set aside to draw attention to this disease. But we need to pay attention to it year-round.
So I’d like to offer the final lessons my father has taught me.
Dementia is a particularly difficult path to death, both for the afflicted and the caregivers, and the road ahead is truly dangerous: An estimated 135 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 laws and policies regarding heathcare options and coverage, and 3) reassessing our end-of-life decisions and culture.
Currently, Alzheimer’s research receives $566 million in funding (according to the National Institutes of Health). Research investments in other conditions, such as cancer ($5418M) and HIV/AIDS ($2978M) are paying off. This proven approach should be applied to Alzheimer’s, if for no other reason than Alzheimer’s is the most expensive disease in America. For every $100 that the NIH spends on Alzheimer’s research, Medicare and Medicaid spend $26,500 caring for those with the disease. The Alzheimer’s Association could use our financial support so they can continue to advocate for funding dollars. As the largest national voluntary health organization, they also offer the most on-the-ground services — the Colorado chapter offers over 90 support groups in our state, for instance.
A rethinking of our health care system is needed too. Seventy-five percent of Alzheimer’s patients now receive at-home care, which I believe is not always the best option. A recent New York Times article, terrifically outlines the situation, namely that for-profit health care models have made community-based care/services cost prohibitive for most Americans; Medicare provides very little help for the type of care most needed (custodial); and social policy or social insurance has been underexplored. Very few can afford private health care, and those that do end up spending their life savings. We must have a better way of caring for those with dementia.
Finally, we must rethink our approach to death — and embrace it — and make medical decisions accordingly. By the age of 85, 40 percent of us will have dementia. It’s important that we all (doctors and regular folk) learn to say judiciously say no to medical intervention and allow death to happen. Should my father contract pneumonia, for example, my hope is antibiotic not be administered, not because I don’t love him — I love him very much — but because death is a natural part of his life, and continued medical intervention is a denial of that fact. I hope we, as a culture, understand the difference between saving a life and prolonging a dying.
I wish for a lot. I wish my father had stepped in that elevator that day. I wish the disease didn’t exist. I wish cures or effective treatments were on the foreseeable horizon. In absence of all that, though, my hope is that we use this this month for a renewed interest and clarity on this disease and the ethical decisions that surround it, and start now by donating, volunteering, contacting our legislators, and writing out our plans (both legal and personal) for a good death.
Laura Pritchett, PhD, is an American author and Colorado native. Her latest novel, “Stars Go Blue,” is based on her experience with her father.
To send a letter to the editor about this article, submit or check out our for how to submit by e-mail or mail.
