You Don’t Know What You Don’t Know

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There are things you know. There are things you don’t know. But there are also things that you know you don’t know as well as things that you don’t know that you don’t know. Sounds like a tongue twister, but it actually makes a lot of sense if you break it down. For example, I now know how to self-publish a book. I don’t know how to design a rocket engine. But I know that I don’t know how to design a rocket engine. And there are aspects of rocket design that I do not even know exist.

When someone is given a diagnosis of Alzheimer’s disease or another dementia, there will be lots of knowns and unknowns. The medical system is hopefully there to help navigate. You know your loved one has dementia, but you don’t know how long the disease will last. You know there must be treatments and best practices, but you don’t know them yet. And there’s a whole host of things about dementia that you don’t even know that you don’t know about.

This was true even for me, a physician. I knew a lot, and I knew that there was a lot that I did not know, but that I would find out. I was surprised to learn of things that I had no inkling about. Like geriatric psychiatry units and the fact that seizures are a complication of Alzheimer’s disease, especially in the younger-onset variety. I didn’t know that I didn’t know that, so I had no way to prepare for it.

Family caregivers need information from their physicians and others in the medical system. Too often, families feel dropped or left to figure out a diagnosis of Alzheimer’s disease on their own. It’s as if the physician says, “Your loved one has dementia. Good luck.”

That certainly is not literally the case, and hopefully, it doesn’t happen exactly like that. It’s just that it feels like that to the family.

So what do families, and their loved ones, want and need from their physicians and others?

A good roadmap of what the future going forward might look like would be nice. When I asked this, I was told something along the lines of, “We just don’t know. Every person with this disease is different.” Which is true, I know! But not very helpful.

I think a brief discussion of the stages of Alzheimer’s disease would be in order, as well as a list of recommended books and websites in which to gather more information. I never did this as a physician, but it’s a good idea. Looking back, it would have been nice if I had a handout ready to give: “You’ve Been Diagnosed With Alzheimer’s, Now What?” And a similar one for caregivers.

Beyond information given after the initial diagnosis is made, information about each stage  could be made available at subsequent appointments. Too much information at the beginning stages would be overwhelming, but being caught unawares about something is just as scary.

Handouts or brochures about the disease would ideally also include information about area resources. A list of support groups, respite care programs, adult daycares, and agencies that provide help could be given at every office visit. There are definitely resources available to families affected by dementia, but there is a lack of knowledge about them by most physicians as well as the general public.

Because we don’t know what we don’t know!