My husband and I have just finished watching both seasons of Joss Whedon’s television show “Dollhouse,” which got me thinking about how we value our memories and the fear we hold around losing them.
The aspects of the show that were interesting from the standpoint of dementia is that the worst thing which happens to the people in the show is the exact same thing which happens with dementia. You lose your memories, and often become someone else. People’s personalities change with this disease. You may never really recognize your loved one again because they no longer act the way they used to. And eventually they end up in a “doll state” wandering aimlessly around with a blank stare. The salvation from this disease would be to get your memories back.
We can enter a world of science fiction where people’s minds are wiped clean and we hope for these people to get their memories back. We know how frightening it must be to lose everything about who you are and we think no one should have to endure that. But we do not often understand that something very similar is happening in reality every day.
It is argued in the show that the “dolls” have no idea who they are or what they lost, therefore this mind wiping is not unethical because it does not hurt them physically or emotionally. With no memories, they don’t miss what they once had. People make the same argument about advanced Alzheimer’s patients as well, that they have no idea what they have lost so they feel no grief or pain at what is going on and who they have become. I believe by making such an assumption we are minimizing and not understanding the severity of this disease. We do not know if dementia patients really have no idea what they have lost. In fact, in the television show the whole plot revolves around a few dolls, one in particular, who do remember little snippets of who they were. They know they have lost something they once had and this is profoundly agonizing for them. They can’t vocalize what they have lost, but they know something is wrong and they want to remember. How do we know this is not what advanced dementia is like?
This show, to me, represents the ultimate fear of dementia, that we are trapped in our own bodies, not really knowing who we are but feeling intense terror and grief at what we know we are missing but cannot name.
I know we do not want to describe the disease in that way, but I also know this is what many people with dementia fear the most.
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