Do people with dementia really “live in the past”?
Wow, this question led me down a rabbit hole.
And then I thought about Alice in Wonderland and that rabbit hole.
Hmm, that is so meta.
In Alice in Wonderland, when Alice follows the White Rabbit down the rabbit hole, a common interpretation is that she is on a journey to seek knowledge. The White Rabbit itself is sometimes considered a symbol of curiosity.
“Alice follows the rabbit because she is ‘burning with curiosity.’ Soon she finds things becoming ‘curiouser and curiouser.'” – Alice in Wonderland, Lewis Carroll, p. 19
Another parallel with Alice in Wonderland is the interpretation that Alice is entering the surreal, an alternate world, a complex and perplexing world. And the fear that she is losing herself.
This is how people have described the experience of dementia to me.
I believe we have to go down the rabbit hole, in a quest for continued and deeper understanding about the experience of dementia, and to become curiouser and curiouser.
So, let’s jump in, shall we?
It started with this question: Are people with dementia really living in the past, as if they really believe they are in a previous time, at a previous age, like a time traveler?
I am considering this question because I have heard this phrase of “living in the past” used often to describe people living with dementia. And it seems like we have developed several ways of responding to, and trying to support, people living with dementia that is based on this seeming assumption that people living with dementia are actually living in the past.
So, it made me wonder what we mean by “living in the past”, and that we perhaps might need to become curiouser about it.
What we observe about people living with dementia is that they might talk about their children as if they are still young. Or, tell us that they need to go to work, when they no longer work. Or, disagree with us that they are their actual age, perhaps suggesting they are a younger age. They might ask for their mothers, as if their mothers are still living, when they are not. Or, recount stories from their childhood or young adulthood. They might use their native language.
So, perhaps we assume then that they are “living in the past”.
When I think about it, I have never seen any neuroscientific evidence that people with dementia are actually living in the past, in that their brains have rewound to that time.
Overall, there seems to be limited evidence regarding the strength or weakness of long-term memory in a person living with dementia, from a neuropsychological perspective, mainly because it is complex and hard to measure. Aspects of long-term memory are better for some people with dementia than others. For many people living with dementia, especially Alzheimer’s disease, aspects of long-term memory seem to weaken with progressive brain damage from their disease. The evidence that does exist, related to memory in people living with Alzheimer’s in particular, mostly refers to a person’s difficulty in recalling information. It seems important to note that recall refers to the ability to retrieve information from the past. Could it be possible that memories are still “there” and they just can’t be accessed easily?
So, memory is very complex and there is a lot we don’t know about memory, including how it works in people living with dementia. What we do know is mainly based on how brains work in contrived laboratory situations, whether it be neuroimaging or neuropsychological assessment. Not necessarily real-world situations. (Neuropsychologists and neuroscientists, we say this with love and respect, and perhaps you would not disagree. Just being curious!)
In other words, it is difficult to support the idea that people with dementia actually “live in the past”, from a neuroscientific perspective.
Might there be alternative explanations for a person with dementia “living in the past”?
Let’s keep tumbling down this rabbit hole.
Perhaps when people living with dementia seem to be “living in the past”, they are having strong vivid memories. They feel real, and they are real, because they are being experienced by that person.
All of us can identify with this.
Have you ever had a moment when you were hit by a strong recollection of something in your past? Maybe it was a memory of a time in high school, and it felt so real. You can remember small details of who you were with, what you were doing, and what music was playing. Maybe even, in some way, you were transported back to that time, as if you embodied that memory.
We all have had strong memories of the past. But when you experience that memory, are you really living in the past? Do you really believe you are that past person?
Perhaps, when people with dementia are talking about a past event or time, as if it is happening now, they don’t actually believe they are living in that time.
Perhaps they are using the language that is available to them to describe what they are experiencing. Because many people with dementia have challenges with language, could it be, that because that memory is real to them, they are articulating it as real? But that they do not actually think they are living in that time.
Even when a person living with dementia speaks in her native tongue, could it be that she is using the language that is available to her? Rather than thinking she is living in that past time when she often used that language?
There are endless alternative reasons for why a person living with dementia seems to be acting like she is “living in the past”.
We focus a good bit on the past of people living with dementia. Possibly because we (misguidedly) think “that is all they have”. A person’s life story is extremely important. That goes for all of us. Yet, would any of us want to be entirely defined by our past?
To be clear, I am not saying that reminiscence and talking about the past is “bad”. The focus on people living with dementia “living in the past” is well-intentioned. It is an effort to maximize the strengths of people with dementia – if a person can’t seem to recall recent events, and can seem to remember past events, it makes sense to focus more on what a person with dementia CAN remember. Perhaps reminiscing about the past brings a person with dementia joy and comfort. Perhaps it helps a person feel grounded when the world around her seems confusing. Perhaps it helps a person feel whole.
The concern is that this assumption of people “living in the past” is interpreted to mean that all people with dementia only live in the past, or mostly live in the past, or are actually going back in time. When they might not.
I’ve become curiouser and curiouser about what this assumption might mean for how we see people living with dementia, and support them
We are picking up speed down this windy rabbit hole.
How does thinking that people “live in the past” affect how we think about them?
Describing people with dementia as “living in the past” has the potential to “other” them. It abnormalizes this normal human behavior of reminiscing. And it is a way of maintaining that people living with dementia are so different than us. “Those people” who “live in the past” are not in “our” reality.
Yet, they are still here, right in front of us.
An over-emphasis on people living with dementia as “living in the past” might also result in an over-emphasis on memory challenges and keep us from seeing the other non-memory-related cognitive challenges they face – difficulty with attention, information processing, and language, for example. For some people with dementia, having challenges with memory is not their most significant challenge. Cognitive challenges of dementia are different for each person.
Why is this important? Why could it be limiting to think that all people living with dementia “live in the past”?
When we hold this assumption about all people with dementia “living in the past”, we build supports, services, and residential communities that are centered around this. This could be confusing to people with dementia, or it might not meet their needs.
Each person with dementia is a unique individual with a different life story. There are endless ways in which one person with dementia is different than another person with dementia.
A person’s past is made up of many different things. It is highly complex. And what is clear to a person at any given moment may change in another moment.
Even if a person with dementia seems to be “living in the past”, there is likely not a single version of the past that a person is “living” in. I grew up in a very urban neighborhood in Queens, New York. in an apartment. I also spent a lot of time at my grandparents’ country home. Then I lived in a suburban area during high school. These are all aspects of my past. So, if one was creating supports and services for me, as a person with dementia who is “living in the past”, would you re-create my Queens experience? My country one? My suburban one?
But why does this matter?
Because believing that people with dementia only “live in the past” limits our ability to see people with dementia for who they are today.
Not just for what they can or can’t remember today. But for who they are today.
Focusing on people with dementia “living in the past” has possibly kept us from another important quality of people living with dementia – that they actually are really good at living in the moment. That they have an amazing ability to accept what is in front of them, and be with it, for that moment.
Why is this important?
Because people living with dementia are individuals. They are multidimensional human beings who have more than one story, and a myriad of memories that are all part of who they are today.
Because we need to see people with dementia for more than who they were, but for who they are now. And who they WILL be. We are all capable of ongoing growth and experience, including people living with dementia.
Because people with dementia might be the exemplification of curiosity, with their ability to deeply experience long-past memories, as well as deeply experience this present moment.
How do we cultivate this curiosity, and honor its complexity? How do we ensure that the supports and services we create for people living with dementia reflect who they are as multidimensional individuals?
“‘Who are you?’ said the Caterpillar.
This was not an encouraging opening for a conversation. Alice replied, rather shyly, ‘I — I hardly know, sir, just at present — at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.’
‘What do you mean by that?’ said the Caterpillar sternly. ‘Explain yourself!’
‘I can’t explain myself, I’m afraid, sir,’ said Alice, ‘because I’m not myself, you see.’
‘I don’t see,’ said the Caterpillar.
‘I’m afraid I can’t put it more clearly,’ Alice replied very politely, ‘for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.’
‘Well, perhaps you haven’t found it so yet,’ said Alice; ‘but when you have to turn into a chrysalis — you will some day, you know — and then after that into a butterfly, I should think you’ll feel it a little queer, won’t you?’
‘Not a bit,’ said the Caterpillar.
‘Well, perhaps your feelings may be different,’ said Alice; ‘all I know is, it would feel very queer to me.’
‘You!’ said the Caterpillar contemptuously. ‘Who are you?’
Which brought them back again to the beginning of the conversation.”
-Alice in Wonderland, Lewis Carroll, p. 59