"Living without memories": a case of anterograde amnesia

A few days ago I stumbled across a documentary, as fascinating as it was moving, about a young man who suffered a brain injury in a car accident and, as a result, developed severe amnesia. To give you some context, there are two types of amnesia depending on the time frame:

• Retrograde amnesia: the person can’t remember their life before the accident, trauma or illness. Depending on how severe it is, this can mean larger or smaller gaps in their life story, or being unable to remember anything at all about their previous life.
• Anterograde amnesia: in this case the person loses the ability to form new memories from the accident, trauma or illness onwards. In other words, they remember their earlier life but can’t retain new information. Anterograde amnesia is what our protagonist has.

There are quite a few films and documentaries about the first type of amnesia, but far fewer about the second… Dory from Finding Nemo comes to mind, who would be a case of anterograde amnesia, except that Dory was funny, and real-life cases, not so much…

The man in the documentary couldn’t go more than three days without contact with a particular person, or he would completely forget that they existed and everything to do with them. So if his wife went away for a long weekend and they didn’t keep in touch during those days, he would forget her entirely, see her again and have no idea who was standing in front of him. Everything would be wiped, including his feelings for her. And that three-day window applied to the people closest to him, not to everyone or everything. He explained that he couldn’t remember moments like the birth of his baby (which had happened months earlier), or what he felt at the time. Obviously, this made it very hard for him to make new friends, because every time he met someone he’d already met, it was like starting from scratch: he remembered nothing of what they had talked about or shared, or of what he’d felt towards them.

Can you imagine what it must feel like to live like this? Quite apart from the enormous difficulty of getting through each day and the most basic everyday tasks… We build our identity from our experiences in this world (and I mean that in the broadest sense of the word), experiences that over time become memories we store and that, from a very young age, shape our idea of who we are and of our place in the world. How can I know who I am if I can’t hold on to any of my thoughts, emotions or experiences from a certain point in my life onwards (in this case, the car accident)? This creates huge insecurity, because there’s no common thread running through your life, no inner narrative to help you know yourself, understand who you are, find your place in your own life and in your relationship with the world you perceive. In fact, you can see in the documentary how he breaks down several times when describing what it feels like to live this way.

What can help

What therapy and everyday strategies can help these people lead as functional a life as possible? Most of them are very well described in the documentary; here’s a brief summary to give you an idea:

1. It’s essential for the person to attend neurorehabilitation to give themselves the best chance of improving. In fact, the man in the documentary repeatedly said how important rehabilitation was for him and how much progress he’d made with it. Alongside this kind of therapy, a professional also needs to help the person with the emotional consequences of living this way because, as he made clear, there are very hard moments and emotionally it can often be devastating, both for the person and for their family. Individual and family therapy are both needed to learn how to live with this problem.

2. Another key strategy for people in this situation is writing things down: from notes all over the house reminding them what they need to do that day, what they need to take with them (keys, phone, money), the shopping list… to personal diaries about what happens in their life and what they think, feel and do at each of those moments. Notes are necessary on a practical, functional level, because without them daily life would be impossible for someone in these circumstances. Imagine: you go to the supermarket to buy something, an hour later you’ve forgotten and go back for the same thing. And three hours later, you go again. Or you don’t remember that you’ve dropped your child off at nursery and need to pick them up. And so on with everything.

   Diaries, however, are essential for helping the person on a deeper, autobiographical level. As I said a few lines above, the experiences we live through and the memories they become help shape our identity, who we are and our place in the world. Reading these diaries helps people hold on to those experiences, to know not only what they lived through but also how they lived it, that is, what they thought and felt at the time. Because remember, amnesia covers everything: what I did, what I thought and what I felt.

3. Video-recording everyday events, as well as important ones, also seems to help. As the documentary pointed out, the sounds, colours and movement in a video help people relive the moment more vividly.

4. In cases like this, a well-established routine is very important. It’s common sense: changes or variations create instability and insecurity for these people. On top of that, it seems that the more a routine is repeated, the more likely it is to be remembered.

5. Support. As always, the more support, the better the person’s chances of not falling apart. In the documentary this came from two sources: family support, especially from his partner, and support from an association of people in a similar situation.

In cases of amnesia, both retrograde and anterograde, some people eventually recover their memories or their ability to store new information. However, this doesn’t always happen, and some people, as is the case for our protagonist for now (five years have passed since his accident), have to accept that this is their new life. And that, in my view, is their greatest challenge.

The documentary I’ve based this on is Leben ohne Erinnerung (“Living without memories”). Unfortunately, the videos I used to link to here are no longer available online.