Information Asymmetry in Caregiving

Since beginning this journey, I’ve been privileged to speak with a lot of family caregivers, most of whom have been remarkably candid. They’ve told me really intimate stories, and the breadth of the experience is astounding. Moments of triumph are in tension with constant struggle. Feelings of pride are tempered by those of embarrassment and self-doubt. The gift of these vignettes keeps me motivated and grounded, but, if I’m being honest, sometimes they can make me quite sad. Hearing about someone whose dad doesn’t remember their name, or whose marriage fell apart after their child passed away can do that to you. For my own emotional well-being, I remind myself that these are not the whole experience of caregiving, and that I can use them for good — they solidify my conviction in our mission.

It’s been a while since my last real sit-down with a caregiver, so I’ve had a bit of time to reflect on being let into the personal lives of more than a few strangers. Something occurred to me — I’d bet that some of their close friends and family haven’t even heard these stories. There’s something strange about how people perceive privacy. Sometimes, sharing something deeply personal is easier with a stranger — whether that’s a therapist or someone who is on a journey that intersects with yours, but will probably never see again. Telling them your story feels detached from your more intimate sense of reality. I saw this first hand in my time at Idea Couture, working with gifted anthropologists — social scientists who are trained to get new acquaintances to open up, uncovering contextual insights that can’t live on a spreadsheet. In my opinion, a component of why these ethnographies worked so well is because the person being interviewed or observed has no reason to believe that they will ever see this researcher again. How odd that anonymity actually serves to unlock intimacy!

So, armed with this scrap of an insight — that friends and family may not know the intimate details of a caregiver’s emotional and physical journey — what questions does this force us to ask? A short list might include:

Should a caregiver’s friends, family etc. know more?

• If so, who should make that decision?
• What would be the benefit? The cost?
• If sharing is beneficial, how do we make it easier for the caregiver?

What effect does this information asymmetry have on:

• Quality of life for the caregiver?
• Quality of this person’s relationship with the caregiver?
• The amount of support the caregiver receives from this person?
• And as a result, the quality of care being delivered by the caregiver?

Is this asymmetry a conscious decision? Or is something structural/cultural standing in the way?

• Do caregivers want to share?
• Do their supporters want to know?
• Do they have the proper tools and tactics to share effectively?

There are certainly dozens more, and I don’t intend to answer these today. I will say , however, that one of my central hypotheses is that reducing this information asymmetry would be a very good thing for caregivers. To illustrate that point, I want to talk about the phrase I find to be the single most disturbing belief in caregiving:

“You find out pretty quickly who your real friends are…”

My heart sinks every time I hear that, and I hear it a lot. Whatever the equivalent of a “hopeless romantic” is for friendships, that’s me. It could be innate, but I feel like I’ve been conditioned to assume the best in people I know. I have been so fortunate to have many friends whom I know would jump at the chance to help me if I needed it, and I hope they know I would do the same. But what if that chance to help never appeared?

Recently, I reconnected with a good friend whom I hadn’t seen in years. As we caught up, I learned about many things he and his family had gone through since I last saw him. Cancers, blood clots, you name it. He’s doing great now, but I felt a wave of guilt. That feeling was quickly corrected by my brain’s message of “you couldn’t have known”. My brain was right — he was halfway across the world, and neither of us did a good job of keeping in touch, but it didn’t stop me from wanting to go back in time to change things a bit. Thankfully, this friend has maintained a really positive outlook, and our friendship picked up more or less where it left off. Our interaction is an obvious illustration of the surface of this problem — people can’t help you if they don’t know you need help.

Here’s a thought exercise to work through the complexity. Let’s just assume that you, the reader, are a friend of mine with pretty limited medical knowledge — a very common thing. I tell you my newborn son (again, fictitious) has been diagnosed with Down Syndrome (DS). DS is a fairly well known disorder by name, but what do you really know about it? Do you know the symptoms? The outlook? Do you even know what types of language you should use when speaking about my son? Probably not. Are you going to invest anywhere near the amount of time learning about it that I will? Absolutely not. This is the seed of information asymmetry. I’m going through something and you’re not, and you don’t get it — which, by the way, is totally normal.

Ok, now, as a non-medical person, be honest about how comfortable you feel in this situation. Probably pretty shaky. You wouldn’t know how to react to the new reality I’m living in, especially if you were there for a medical emergency. So what’s the best you think you can do? You quickly offer support, but being as vague as possible so I’ll tell you how to help — after all, I’m effectively the boss in this situation. You don’t hear anything back, and you assume all is well on my end.

Meanwhile, if I had any hair left, it would be on fire. I’ve received 40 text messages just like yours and I’m not responding to them because I’m consumed with caring for my son, keeping my job, and figuring out the next 30 years of having a dependent who is living with DS. It’s only weeks or months later that I start to realize that you’re not in my life anymore and, in my stress, I blame you for it. If you’d been a real friend you’d have stepped up when I needed you. Now, not only am I embarrassed to ask people for help, you, someone I expected support from, have fallen off my radar of willing candidates.

Whoah. That got out of hand quickly, right? Especially given that you started with good intentions! You just didn’t know what to do, and now you’re the bad guy. I get why caregivers say “you find out who your real friends are”, but I think we would all be well served to consider the other side, and how stepping up can be really difficult. This illustrates the point one level deeper — if people don’t know how to support you, they often don’t.

A lesson in how to fix this is here, though. Caregivers also frequently mention how someone they never expected anything from had stepped up in the biggest way. You know what a fairly common characteristic of that person is? They’ve gone through something similar (as a caregiver themselves, or as a supporter) before. They know what to say and what not to say. They know what kinds of support are useful and they just act without waiting for your guidance or permission. They are not shaky, and they are not confused. There is just far less information asymmetry. If everyone knew what this person knew, could more friendships survive these ordeals? I think so, and they may even get stronger! Some friends and friendships are strong enough that through sheer tenacity and empathy, the asymmetry is conquered. Unfortunately, most friendships nowadays are periodic — connected via Instagram, not conversation. This is not an effective way to build real empathy in a troubling time.

The future of caregiving sits on a scary precipice (which I’ll write about soon), but there is a bright version. I believe one of our biggest challenges to getting there is finding effective ways to correct information asymmetry.