“Vivek Murthy, the current Surgeon General, has talked a lot about loneliness and isolation, including of older people. But we don’t talk about how alone caregivers are, too. There isn’t the concrete support people need about how to how to provide care.

For example, dementia is a tremendously complex illness. We need to understand what it what it means to have dementia, how many different manifestations and the caregiver relationship. What if you’re estranged? What if this is a really fraught relationship? What should the expectations be? I think we’re making a lot of assumptions as a society, that come as a complete surprise to caregivers. That was another set of data that I found shocking, that for so many, they didn’t anticipate becoming a caregiver. They didn’t plan for it. Sometimes they don’t even call themselves a caregiver. But suddenly, somebody ends up in an ER, and there’s a call like, “Okay, come get Mom.”

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“Our mental health system is also pretty broken, as is our drug treatment system. If you look at that combination, a lot of older people are supporting younger relatives — kids, grandkids, nieces, nephews, whatever — who they’ve supported for a long time, because they love them, even though there’s a mental health issue or developmental disability issue or drug issue. Then, as the older person ages deeper into old age, and sometimes into frailty, sometimes the tables turn, and they need care. But they want to stay at home, they feel loyal to the younger person they’ve been trying to support, and suddenly it shifts so that the younger person falls into the position of being a caregiver. That can work for a little while. But as the care needs mount, it’s often a recipe for disaster.

I think we haven’t recognized it. We don’t have good data on it. We don’t talk about it. I get the reluctance to talk about it, because we want to say, caregivers should be hallowed. And also, a lot of people aren’t equipped to provide decent care. Part of it is that social pressure to say, “Okay, now you have to be the caregiver,” because there are very few options that are affordable. That pressure can be really insidious, and really counterproductive in terms of health and well-being. People need to perceive that they have choices, and that they have support so that they’re not so alone.”

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“As a culture, we need to be less reactive and more proactive. We also need to do that in our own lives and families. We need to start having the hard conversations. We need to have them way earlier. We need to say okay, what do I want my old age to look like? What’s important to me? How much money do I have? How do I want to allocate it?

Generally, there’s someone in the family maybe who’s better at helping with money, and maybe somebody who’s better at fighting with insurance companies and somebody who’s better at maybe arranging caregiving or dealing with parents. How do we want to allocate that? What’s important to us is tremendously important. We have the social structures and what’s called choice architecture that takes us to retirement. But we don’t have much for this prolonged, late chapter of life to help us through 20, 30 years.”

Read more in Salon.