Reimagining our view of dementia
In a new book, Dublin-born neurologist Dr Jules Montague looks at what happens to the person left behind when memories fade
One day, Patrick found his wife's handbag in the fridge. They had spent the previous half-hour looking for it and there it was. On the second shelf, next to the cream cheese.
As Alzheimer's disease eroded Anita's brain, nerve connections malfunctioned, abnormal proteins gathered and neurotransmitters failed. She asked Patrick the same questions repeatedly. Words vaporised and sentences misplaced structure. She muddled up faces and names. She was just tired, she thought. These were senior moments. She reassured herself, others reassured her.
They did the Bog of the Frogs walk four times a year. A three-hour loop up the promenade of Howth, north-east of Dublin. Up the path over Balscadden Bay by WB Yeats' childhood home, along the cliffs watching peregrines and kittiwakes and razorbills, towards the old Baily Lighthouse looking out to Dublin Bay, through the Bog of Frogs, a circle of the Ben of Howth and back along the tramline to the harbour for seafood chowder, watching the sea lions as the day faded away.
Somehow Anita had fallen behind the rest of the group, lost sight of them for just a moment. Then she was alone, looking at the little arrows on wooden posts that marked the route and they were pointing to the right one minute and to the left the next. She decided to try one way, which way she couldn't remember now, but it was hopelessly wrong.
On a small muddy path, the voices of fellow walkers grew distant as panic soared. A man from the golf course had found her, shivering and bawling and unable to figure out how to dial Patrick's number.Anita sat in front of me now at my Neurology clinic, Patrick by her side. I think they already knew.
She could remember childhood summer trips to Butlin's Holiday Camp at Mosney: the Holiday Princess Competition, HB cream ices and treasure hunts. But ask her what she did that morning or the week before and the room swelled with silence.
"Apple", "table", "penny", I asked Anita to say three times. A minute later, I asked her to repeat them. She couldn't. She knew the month and the year but not the day or date. I asked her to draw a clock - she bunched up all the numbers to one side. Doctors are taught to look for asymmetry, outliers, differences. That's where pathology lies.
"That thing, you know that thing, that thing. Lions the wet. Carcan leap deep parz. Children sea." Pronouns disappeared, syntax ebbed away.
But despite this gradual transformation of speech and of thought and of being, wasn't there something of Anita still present throughout? Wasn't Anita still, in a sense, Anita?
Anita's memories, it seems to me, are her story, her record of herself. Those earlier experiences link present Anita to past Anita, they seem to make her the same person. And this sameness is at the core of identity - the confluence of things that make you you, over time.
Let's try an experiment. Gather all your memories into a cardboard box - of building sandcastles and breaking wine glasses, of first loves and lost loves, of road trips and car crashes, of sunsets and storms. Emotion trickles through each memory - sorrow for a friendship allowed to fade carelessly, the elation of a relationship rekindled.
Once the box is full, imagine you're standing at the foot of a mountain. While you're doing that, I'm standing at the top of the mountain and I'm emptying my brain of each and every memory it has ever held. Next, a volunteer takes the box you've filled (it's heavier than she expected!) and ascends towards me. She tips your box of memories into my brain. Where are you now? The essence of who you are? At the foot of the mountain bereft of those memories? Or at the top, in a different physical body?
I think most of us would intuitively feel that we are wherever our memories lie - of those first loves and lost loves, and sunsets and storms; of the things and people and times we sense made us who we are today. You are at the top of the mountain.
Yet when I wonder if Anita is the same person as before through her Alzheimer's, I suspect there must be more to us all than a box of memories. She appeared more vague, more fragile, with each clinic visit. But she still resembled the person who had walked into this room three years before.
"Cogito ergo sum," wrote Descartes. "I think, therefore I am." The body is simply a possession - in Alzheimer's seen, sometimes, as a battleground to clean and control, secure and constrain. But switch the filter and another view emerges: it's not just that we have bodies; we are bodies, we are embodied. Bodies that interact with the world and engage with it.
Take Raymond's story. Early on in his dementia, I glimpsed his fear of physical contact - his shoulders tensed, his fists clenched even as a nurse checked his blood pressure. Later, he could not verbalise the abuse of his childhood but he shouted whenever the parish priest passed by his home. In the past, his wife told me, he had switched channel at the first sight of a religious programme. In this new parish priest, Raymond saw the priest of his childhood. He shouted in order to switch the channel.
Raymond was the tears he cried when his brother put a hand on his shoulder. He was the way he bounced his granddaughter on his knee. He was his weathered skin from years on a construction site. He was his tender embrace of his wife. His gestures, habits and actions were embodied. His existence was resolutely embedded in his physical experiences, perceptions and interactions. Dementia should not steal this away.
Despite this, our medical model of dementia continues to revolve around inability and invisibility; it insists that Anita is defined by her fading away. Impairment in the ability to perform day-to-day tasks is even a core diagnostic criterion for dementia - as doctors, we cannot tell you that you have dementia until we know what you can't do. And so we ask questions about what's missing rather than what remains. At least in the medical setting, our view of dementia desperately needs to be reimagined. Otherwise Anita's identity can only hurtle towards annihilation.
Shift the pinhole focus on dysfunction to a broader visual field of enablement and engagement and everyday conversations and art classes become not just pastimes but conduits of expression and connection. Take away the dark corridors of residential homes and imagine them into social spaces: design streets in these homes with meeting points, benches, street lights and village squares. How can anyone belong if they are brutally removed from the world? We must enable people with dementia to be present, undeniably so.
Was Anita the same person as before? I believe that her continuity of being lay far beyond the accuracy of her memories or the fluency of her speech or the dexterity of her movements. Beyond the abnormal proteins gathering in her brain or the nerve cells disappearing with each passing day. Which is not to deny her dementia and its inexorable progression until her death, or to deny its ramifications for her and her family, but instead to refuse its capacity to withdraw personhood. To see her, still.
I remember her each time I walk up by Balscadden Bay, along the cliffs, back by the tramline. Where she was lost, but found again.
- Adapted from Lost and Found: Memory, Identity, and Who We Become When We're No Longer Ourselves by Dr Jules Montague, published by Sceptre on March 8.