CONNECTING THROUGH DEMENTIA

The roar of the traffic, the passage of undifferentiated
faces, this way and that way, drugs me into dreams; rubs the
features from faces. People might walk through me. And what is
this moment of time, this particular day in which I have found
myself caught? The growl of traffic might be any uproar - forest trees or
the roar of wild beasts. Time has whizzed back an inch or two on its reel;
our short progress has been cancelled. 

Virginia Woolf, The Waves

Too many queens in the parade

My grandmother, née Mary Evelyn McGavin, but Mooie to us, spent her last years with her daughter, my aunt, on a remote farm in Nova Scotia called Marginal Farm. One day towards the end of her life she looked out the window at the fields and complained, “There are too many queens in the parade.” This wasn’t Toronto during Pride weekend and it wasn’t an episode of The Crown. She was inhabiting a different world.

Mooie had had Parkinson’s disease for many years, and had developed Lewy Body dementia, which is a particularly intense form of dementia where sufferers can be thrown into a hallucinatory world, often terrifying. It wasn’t all royal parades. She had traveled all over the world back in the age of the big ships and now was often lost in transit. Because of the Lewy Body her hallucinatory dislocation was extreme. But right to the end she could still sling verbal witticisms.

Yet often, with more common forms of dementia, our loved ones just seem to drift away from us.  Now my mother, always so verbal, is slipping into a world where one moment is a bubble detached from the next, and she doesn’t speak much anymore. Although she too is still capable of a good zinger. I myself have one copy of the APOE4 genetic variation that bestows vulnerability to dementia. So part of me is looking to understand and advocate for my mother now with the hope that my kids will do the same for me later.

Like a lot of other people who have parents with dementia, I’m often angry with my mother for not being my mother any more. Where is the person who is supposed to take care of me? And sometimes when a bit of her old self peeks out I realize how much I am ferociously grieving the woman she was.  Like a lot of other people with parents or grandparents or friends with dementia, I wonder how much of her core self is still in there. And how to reach it. I’m trying to figure out how to be with her.

Participatory sensemaking.

I catch your eye. I, who had been thinking myself so vast, a temple, a church, a whole universe, confined and capable of being everywhere on the verge of things and here too, am now nothing but what you see.

Virginia Woolf, The Waves

As a bit of a theoretical tangent,  I’m going take a minute to talk about the idea of participatory sensemaking, because this idea is relevant to, well, making sense, of almost everything I will write about in this space.  Participatory sensemaking is an idea that was introduced by cognitive scientists Hanne De Jaegher and Ezeque iel Di Paolo. If you’re interested in hearing more about it De Jaegher describes it really well  in this video.  Basically the idea is that sensemaking, which is an activity common to all lifeforms, involves determining what things or events  in the environment matter to you because they may be good or bad for your continued existence. The idea of participatory sensemaking is that a huge amount of our sense making is social. What’s more, in any interaction between individuals, the interaction takes on a life of its own. The interaction is greater than the sum of its parts. De Jaegher and Di Paolo use the example of two people trying to pass in a narrow hallway, and getting caught in a dance where each person steps from side to side in the same direction, unable to pass, even though each person wants to.  According to this theory, as they engage, what matters to each individual contributes to, changes with, and emerges from the interaction in a way that would not happen without the interaction. One process that is thought to enable this phenomenon is coordination of actions between individuals, as in the sideways stepping in the hallway, such that individuals fall into and out of moments of high synchrony. De Jaegher and Di Paolo predict that changes in our understanding of what matters are most likely to occur just before we move into and just after we move out of these moments of synchrony.  Participatory sensemaking also creates habits that inform future interactions. Because many participatory processes occur between bodies on a non-conscious, nonverbal level, participatory sensemaking is a very useful idea to keep in mind when we think about connecting with the personhood of a person with dementia. 

Who are we anyway?

I cannot remember my past, my nose, or the colour of my eyes,
or what my general opinion of myself is. Only in moments
of emergency, at a crossing, at a kerb, the wish to preserve
my body springs out and seizes me and stops me , here, before
this omnibus. We insist, it seems, on living.

                                                            Virginia Woolf, The Waves

In a piece he wrote titled Embodiment and Personal Identity in Dementia, psychiatrist/philosopher Thomas Fuchs writes about how, in a culture focused on productivity, rationality, and individualism, selfhood is tied up in the ability to construct coherent, conscious, explicit, verbalizable episodic storylines of past life events. No wonder that people with dementia have been wholly dehumanized and described as “quasi-persons” or “sub-persons.” We tend to think that selfhood IS the narrative of ourselves that is created  through explicit autobiographical memory. This, of course, slips away in dementia. The seminal memory researcher Endel Tulving – known for demonstrating that we have not one but many memory systems —  described episodic memory as the uniquely human capacity for mental time travel – the ability to project yourself to another time and place and replay the events like a video clip. If we think this ability is what makes us fundamentally human, then clearly people with dementia have lost their humanity.  

To have dementia is to be frequently disoriented  – to be lost in both time and space. Fuchs describes the fundamental capacities that fade with dementia as those of decentering and reflexivity. Decentering is the ability to step outside of your own body-centred perspective to imagine yourself from the outside, and its loss results in disorientation as well as difficulties with reflective thought, ‘as-if’ reasoning, and properly sequenced episodic memory for past events. Fuchs writes, “the patients’ lived space narrows down to the immediate environment, beyond which, already in the imagination, there arises the threat of emptiness, disorientation and confusion, causing an elementary anxiety” (Fuchs, 2020, p. 70).  You become unmoored in time.  In my last post I mentioned that my mother seems to sample her present situation from different points in time, not just the recent past. So she claims she regularly goes for long walks, or goes to the basement to do laundry, neither of which she  has done for many years. About that, Fuchs writes, “In later stages of the illness the intentional awareness of remembering itself gets lost. This can result in an unnoticed “shifting” into an earlier phase of life – mistaking one’s wife for one’s mother, or one’s daughter for one’s sister, searching for one’s childhood home, etc. Frequently, different phases of one’s life overlap or even co-exist simultaneously“ (Fuchs, 2020, p. 70).

But it’s not all about episodic memory. Disturbances in decentering often lead to disinhibition because you don’t see yourself from an outside perspective. My mother, always a very strict dieter, will now ravenously eat the food off of anybody’s plate, which can be kind of endearing. Disruption of symbolic, ‘as-if’ reasoning results in taking language very literally. Interestingly my mother and grandmother share an approach to humour that I think of as Amelia Bedelia humour, after the kids’ book about a Manhattan maid who takes all instructions exactly literally (mayhem ensues).

So, given all this disturbance of the things we think contribute to our sense of self, is personhood preserved? Vancouver-based Elaine Book has been working as a social worker, mostly in geriatrics and healthcare, for over 35 years. One of the many hats she wears is Center Coordinator and Clinic Social Worker for the Pacific Parkinson's Research Centre at the University of British Columbia. Book describes her work as being in her bones. Her deep love of her community and her willingness to walk alongside the people with dementia and their loved ones and caregivers has given her a tremendous window into their experiences.

When I ask her whether she thinks personhood is preserved in dementia, she responds that it actually depends on the approach that the family and the care team take. “If  somebody is very open minded, taps into lots of different kinds of strategies, and has the perspective that there’s a person still there,” she says, then personhood is preserved.  “It's not the same person that they married or that raised them, but there's a person there and it just looks a little different. If people are open to that perspective then I think that there's preservation. But when I work with people who really don't appreciate that the person is still there and visits become rote or the care provided is minimal... For example, when they don’t look at the person with dementia when they’re talking to them, or they only provide the most basic, primitive form of caretaking — that's when I think the preservation of the personhood is actually at risk.”

Implicit forms of memory

I took the print of life not outwardly, but inwardly upon the raw, the white, the unprotected fibre. I am clouded and bruised with the print of minds and faces and things so subtle that they have smell, colour, texture, substance, but no name.

Virginia Woolf, The Waves

Such a risk to personhood, grounded in the view that selfhood lies in the capacity for episodic memory and rational decision-making, is tragic. Fuchs points out that this view ignores an abundance of evidence that many of the memory processes that make up selfhood are preserved even in deep dementia. These are the multiple nonverbal, implicit, aspects of memory and decision-making that have been well-established in psychology and neuroscience research. When I lecture on memory to my undergraduate cognitive science and neuroscience students, I always show them a documentary about Clive Wearing, a British composer who in the 1980s completely lost all episodic memory due to encephalitis. Wearing’s post-illness experience provides vivid examples of how implicit memory endures in the absence of episodic memory. These forms of implicit memory include emotional memory, emotional associations we have with things in the world, where we know we love or fear someone or something, even when we can’t name the people or objects or explain why we feel what we do. Wearing’s huge love for his wife Deborah shows up as always present, even when other people from his life are forgotten.  Procedural memory involves ‘how-to’ skills, the things we just know how to do without needing to waste time and effort thinking about how we do them. Simple common examples are riding a bike or tying a shoe. At a much higher level of skill, Wearing retained his virtuoso ability to conduct a choir and play the piano. What Fuchs describes as situational memory  allows us to know how to behave in familiar situations, including navigate spatial environments. Over time, Wearing was able to learn to make tea in a new kitchen when he was moved to a long term care home. Finally, and centrally, intercorporeal  (between-body) memory, is an intuitive, empathetic understanding of others shaped by emotionally-laden interactions beginning in early infancy. Arguably, intercorporeal memory is the result of a lifetime of participatory sensemaking, much of it non-verbal and emotionally laden. These forms of memory allow for a continuity of self that does not require conscious attention, and which Fuchs describes as being “sedimented” over a lifetime of experience. When we are looking for the person through the changes of dementia, this, says Fuchs, is where we find it.

Yet, Book reports that loved ones and caregivers often struggle to understand what capacities are still there: ”Often you'll hear things like, ‘Well, they can't talk to me anymore. They don't really even recognize me anymore. They don't respond. So you hear all the don'ts. And I say, well, okay. But they do have the capacity to be loved. They do have the capacity to love. They do have the capacity to experience joy. They do have the capacity to have meaning and purpose in their day.”

But still, loved ones struggle. They struggle most, says Book, where there is loss of language or misrepresentation of words. They struggle emotionally where they face a vacant look, or aren’t recognized – where it looks and feels like there’s no connection. Book says, “I really emphasize the truth that presence is so powerful. Just sitting holding a hand. Touch is so powerful. I think we underestimate how powerful it is.”

So how DO we connect?

Our hands touch, our bodies burst into fire. The chair, the cup, the table-nothing remains unlit. All quivers, all kindles, all burns clear.

Virginia Woolf, The Waves

One powerful  and intuitive way of connecting is through music. “A friend of mine was telling me about her mum’s final days, which were spent in care. Her mum loved music and they had music on in her room. And on the last day of her life the mom just broke out into one of her favourite songs. It was such clear evidence that the person is there and you don’t always know it…. You think they’re not taking anything in but they are,” says Book. This observation is supported by recent evidence from cognitive neuroscientists Lizzie Blundon and Lawrence Ward, who measured electrical brain activity from cancer patients who were in an unresponsive state in the last hours of life. They found that not only did the patients show evidence that hearing was preserved when other senses were shutting down, as described here, but they also showed signs of listening attentively to the music they loved, right to the end.

My mother has always loved to dance. According to Book, “People who love to dance and still have the capacity can move in their chair and mimic gestures. When you’ve got touch and music and movement, something is going to resonate.” Dancer not Dementia is a recent short film, directed by Anthony Grani, that came out of a collaboration between Canada’s National Ballet School and Pia Kontos, a senior scientist at the Toronto Rehabilitation Institute. Kontos, like Fuchs, emphasizes the importance of embodied memory to our ongoing sense of self, and the power of dance — and the arts in general — as the key to it. Her mission is to challenge the stigma around dementia as a public health priority. Dancer not Dementia focuses on the participants in a community dance program for older adults run by the National Ballet School, Sharing Dance Older Adults.  It emphasizes their identity as dancers rather than their cognitive impairment, and pitches the idea that living with dementia is not the end of the story but a different chapter. In the film, Christiana Egi, Director of Alexis Lodge retirement residences in Scarborough Ontario, emphasizes: “Having dementia doesn’t mean not being alive anymore. It means that you need to start doing things differently.”
 

This approach is not the norm in your average long term care home, to say the least. It’s often up to us, as families and friends, to bring any small kindling of connection. Book emphasizes that, in addition to bringing movement, music and touch, there are other artistic channels for connection. “For the family of a former reader, I encouraged them to read aloud. You may not recognize that there is understanding, but it’s a way of connecting and being together. If they can colour then engage in some colouring activity as there’s a lot of research on people with dementia and expression through art as a way to express thoughts and feeling other than verbally. It’s fascinating to see as a practitioner, but also as a person, to see the ways in which they can express themselves and experience part of their day as meaningful.”

Fidget blankets made for people living with dementia are tactile and provide a concrete and immediate focus of conversation and activity. “When a family member visits and they're at a loss for something to say, they can pull out the fidget blanket and talk about the blanket:  ‘So this is pink and I love this bell and here's a zipper and let's open and close the zipper together.’ So it becomes an activity to connect on as well as a tool that that can be used to help with anxiety.”

And then there’s life review. Book tells me a story of how a friend introduced her to this idea. “She did the life review with her mother first. Her mother was coming to visit her for six weeks and my friend questioned what she was going to do with her for such a long period of time. And a social worker recommended to her that she do a life review. So she started asking her mother to tell stories about events in her life. And then they had something to focus on. It turned out to be a very positive experience for both of them.”

“And then this same friend’s sister developed a Parkinson's plus condition. The sister was living in Montreal. My friend told her sister’s daughters that she was coming to visit, and the daughters said that they were not too sure what she was going to do for five days, because the sister didn’t talk and her responses were very limited. My friend went, and she did a life review with her sister, but this time she did it differently. This time she shared all of her memories of her sister's life and their lives together. She talked about her first boyfriend and talked about the school that they went to, and ‘Remember that time you stole my sweater!’  She told these stories to her sister and there were points when her sister squeezed her hand. Pretty incredible. I have incorporated the value of life review into a lot of the teaching that I do with caregivers and  health care professionals.”

Back to participatory sensemaking

So to get back to participatory sensemaking, the consensus seems to be that we can use art to breathe life into the mostly nonverbal modes of interaction that tap into the kinds of knowledge that are preserved in dementia. The arts allow us to co-construct our understanding of what matters. Instead of trying to restore cognitive abilities that just aren’t coming back, or forcing norms and activities that don’t make sense any more, dance and music and stories and drawing provide means to — to quote Book —‘meet people where they’re at.’ By participating in sensemaking with the people we love, we can all continue to have purpose. And lord knows without that it’s all over. In future posts I’ll write more about specific projects combining art and science to engage in music and dance with people living with dementia. I’ll also write about evidence that the aging brain is different from the younger brain – and it’s not just about decline. Finally, I’m inviting my dazzlingly talented students and other guest writers to contribute pieces to add to what I hope becomes a chorus.     

The video above describes Ariane Boulet’s Mouvement de Passage project, which I’ll write about more in a later post.

Postscript: Book says it’s important for loved ones and caregivers to take good care of themselves, and Fuchs says please let people living with dementia stay in their own homes if you possibly can!