| On Good Intentions

| Neal K. Shah

| Reprinted from his Substack by permission

Last week, I was sitting in a meeting with a group of people who genuinely, deeply care about older adults. They talked about dignity, about family, about how the system is failing older Americans. Then, the meeting ended, and everyone went back to a system they participate in every single day… without changing a thing!

I was thinking about that meeting when I read a new study just published a couple of weeks ago. Researchers found that among high-income people, the stronger someone’s love for nature, the larger their carbon footprint. The environmentally passionate wealthy were actually the biggest emitters.

The reason is almost embarrassingly simple: caring about something gives you the resources, the social connections, and the travel habits that produce the very harm you say you oppose. You fly to the climate conference, drive the SUV to the nature retreat. You buy the organic produce shipped from three countries away.

The researchers called it a value-action gap. I think about it as something older and more human than that. We are very good at holding beliefs. We are much less good at letting those beliefs cost us something.

I have spent years working at the intersection of aging and healthcare, talked to hundreds of families watching a parent disappear into dementia, sat with adult children who quit their jobs, moved across the country, and gave up years of their own lives to provide care.

And yet, I have watched an entire professional class of people who say they care about this crisis continue to do almost NOTHING structurally to fix it.

Dementia now affects nearly 7 million Americans, and that number will double by 2060. The informal caregiving those families provide is worth an estimated $1 trillion a year in unpaid labor.

The people doing that labor are disproportionately women, disproportionately low-income, and almost entirely invisible to the policy conversations happening in rooms full of people who care very much about aging.

The gap between caring and acting shows up everywhere in this space. Family caregivers report rates of depression and anxiety that would alarm any clinician. And yet caregiver support remains one of the most chronically underfunded corners of the entire healthcare system.

People nod along at conferences, they post thoughtful things online; and then, they move on. What is interesting to me about the environmental study is not the hypocrisy, because I don’t think many of these people are malicious. The surprising thing is the mechanism. Affluence gives you access to more ways to express your values, and those expressions often carry hidden costs you do not see because you are not the one paying them.

I think that is exactly what happens in elder care.

Families with resources hire help and move on. Families without resources absorb the cost into their own bodies and bank accounts and relationships. The people with the loudest voices in healthcare policy are rarely the ones who have spent a sleepless night wondering if their mother wandered out the front door.

Research on dementia caregiving has shown for decades that supporting the caregiver is inseparable from supporting the patient. We know this – it is not a secret. What does not exist is the willingness of society to change behavior.

The wealthy environmentalist flying to Europe is not always a villain. Neither is the policy advocate who attends the aging summit and then goes home. They are both doing something very human: holding a belief at a safe enough distance that it cannot fully reach them. So I’m not asking whether you care about the caregiving crisis–most people do, at least a little.

I’m hoping this makes you think: What are you willing to let it cost you?

Neal K. Shah is a healthcare researcher focused on caregiving for the aging population. He is an NIH-funded Principal Investigator on the YayaGuide AI for Dementia Caregiver Training project that he started at Johns Hopkins. Neal is the CEO of CareYaya, a social enterprise providing affordable eldercare, and serves on North Carolina’s Steering Committee on Aging.