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Why the U.S. Must Care for Its Elders Better

'Genius grant' winner Ai-Jen Poo discusses her new book on caregiving

By Emily Gurnon and SCAN Foundation

Ai-Jen Poo, director of the National Domestic Workers Alliance and a MacArthur “genius” grant winner, has recently been touring the country to promote her new book, The Age of Dignity: Preparing for the Elder Boom in a Changing America. She sat down with Next Avenue at the national Aging in America conference in Chicago last week to talk about the book:

Next Avenue: You write that the elder boom is often associated with the language of concern and crisis and that the lexicon does not account for all the potential positives of it. What are the positives?

Ai-Jen Poo: The elder boom is a reflection of both the aging of the baby boomer generation and also the fact that people are living longer than ever, which is actually a good thing. It’s longer to connect, to live, to learn, to love, to teach. Living longer is potentially a huge opportunity to live in a whole new way with an extended sense of life’s possibilities.

Except that we haven’t adequately prepared for what we need. The opportunity is that in the process of preparing for what it will take to live well as we live longer, we can address many of the longstanding problems of this country that we’ve needed to address anyway.

One is the fact that as a culture we’ve been resistant to aging — denying or delaying the process, rather than embracing it and preparing for it, the way that we prepare for birth and other stages of life. Another example is caregiving. We have never in this country adequately valued or accounted for what goes into raising families or caring for families across generations, whether it is child care or elder care. We’ve long been at a point where it’s unsustainable.

I love that you point out that caregiving is not just this thing that we are all going to need when we’re old and sick. It happens throughout all of these stages of our lives.

That’s right. It’s such a fundamental element of human life, this caring, both giving it and receiving it. It defines us as humans. If we don’t embrace the ways we all need assistance at every stage of life… it makes it seem like there’s something dehumanizing about needing care. Actually, it is fundamentally so human — not just for older people or people of different abilities, but for all of us. And it reminds us that older people and people with disabilities also give care all the time.

(MORE: Talking With Love Ones About How They Want to Die)

You said in your book that a fundamental problem with our current health care system is that it defines success as “the delay of death rather than the quality of life.” What do you mean?

I mean just how incredibly medicalized the whole field has become, and how we’ve undervalued the actual 'care' aspect of health care. It is a reflection of the fact that we’re always looking for the next medical/pharmaceutical treatment. We’ve really undervalued palliative care, hospice care and the kinds of training and support and resources that help families prepare emotionally and spiritually for everything that happens toward the end of life.

The challenges are a real reflection of the fact that our entire health care system reflects a denial of death and therefore everything is oriented toward how long we can delay it – as opposed to living well throughout every stage and doing what we can to support people to live well. I think the fact that it’s much easier to get very expensive pharmaceuticals in a nursing home than to get a little iPod for music therapy if you have Alzheimer’s is a reflection of that. I recommend the documentary "Alive Inside" to learn more about that.

That’s how the system is set up, right?

That’s right. The system incentivizes pharmaceutical-based and medicalized treatment as opposed to caring and the more human dimension of what people need for quality of life.

(MORE: Why Long-Term Care in the U.S. Is Headed for a Crisis)

Those of us in the boomer generation who are watching our parents go through this — it hits home.  

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Yes. And that’s the other reason why I feel so hopeful and I don’t think of the elder boom as a natural disaster is because I actually think that if ever there was a generation that had the potential to change the way that we feel and prepare for aging, it is the boomers. The generation that brought us rock and roll and all these justice movements, right? This is a culture-driving, culture-changing generation, and we really need a change in culture around aging and caregiving.

You call for a living wage for caregivers. But where does that money come from, especially if the person needing care doesn’t have a lot of money him or herself?

One, there needs to be more economic supports for families to be able to afford the care that they need. So we’ve been rethinking some of the caregiver and dependent care tax credits that exist, and whether those can be expanded.

Long-term, I think we need a whole new approach, a real investment in caregiving infrastructure that actually anticipates the long-term care needs of families, not just the health care needs. The way the current health care system is structured, with ¾ of all health care funding happening in the latter stages of life, there’s so much waste in the way that we spend on health care.

If we could actually invest more in long-term care supports and services that are based in the home… We have to take apart our dependency on nursing homes and institution-based care, because home care is actually much more cost-effective. We have to take apart pieces of our health care system that are hyper-medicalized, that incentivize expensive treatments over palliative care. And we have to invest in the long term care direct care workforce, manage chronic illnesses, prevent unnecessary emergency room visits and (thereby) save the system billions of dollars per year.

(MORE: Sizing Up a Continuing Care Retirement Community)

What is the most important thing for the baby boomer generation to be doing on this issue now?

We think it’s two things: One is having the conversation within your families now about preparing for future caregiving needs, when it’s not in a moment of crisis or emergency. And we’re hoping that that helps people enter the conversation from a more hopeful place than a place of dread and foreboding.

And then the second thing that we’re asking boomers to do is to lead the charge in taking this conversation from one that happens behind closed doors into the national public conversation about our priorities for the future. How do we make caregiving a national public policy priority for the future? It should be something that every candidate in next year’s presidential election cycle will have to answer for.

Emily Gurnon
Emily Gurnon is the former Senior Content Editor covering health and caregiving for Next Avenue. Her stories include a series of articles on guardianship abuse that was funded by the Journalists in Aging Fellows Program. She previously spent 20 years as an award-winning newspaper reporter in the San Francisco Bay Area and St. Paul. Reach her through her website. Read More
By SCAN Foundation
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