Anchoring the Unspeakable: Trauma in Younger Onset Dementia Narratives

“Before the dementia diagnosis, Marcel and I were at dinner with some Jewish friends from South Africa,” said Ruth, Marcel’s wife. I was interviewing Ruth about Marcel’s younger onset dementia. “Marcel started talking about things he never talked of before,” she said. “He told stories about himself during the Holocaust as a child. You know, stories. You know the moral, right? Keep it positive. Don’t talk about the dark stuff. And I said, ‘Stop talking. People aren’t interested.’ . . . But he just kept talking.”

“Maybe his childhood was the cause of his dementia,” Ruth continued. “The separation from his parents when he was seven. They told him his parents had died in the Holocaust. But he never believed it. When he was only 12 years old, upon returning to live in a Paris orphanage, he went to a railway station and sat there waiting. He couldn’t believe his mother wasn’t going to return.” During the war, Marcel was sent with his older sister and brother to a Jewish children’s home in Switzerland to protect them. In 1945 he returned to Paris and lived in an orphanage until he immigrated alone to Australia a few years later. The sea voyage to Australia was a disastrous, life-threatening journey.

“I think he buried a lot,” Ruth said. “He was now obsessively talking about it.” A few months after I met Ruth, I reviewed Marcel’s medical records and found a note from a social worker written one year before his dementia diagnosis. It said: “Marcel has also been speaking more frequently about his experiences during the Holocaust. This concerns Ruth especially when it is done in inappropriate places, such as at dinner parties.” 

Marcel’s silence and late decision to speak of his experience are common among people affected by the Holocaust (and is the subject of other papers). What interested me was how Ruth referred to Marcel’s trauma as a cause of his dementia, how trauma narratives emerged around the time of his diagnosis, and how his family referred to trauma when talking about his dementia. Marcel rarely spoke of his past, telling Ruth only the barest of details. “Until then [the start of his dementia],” she said, “he never really opened up about it. And I didn’t want to push it. I didn’t want to hurt him. He’d been hurt enough in his life.”

Ruth was not alone in her reference to trauma. A pattern appeared. As I spoke with caregivers, families, and people with younger onset dementia (a dementia diagnosed before age 65), trauma experiences emerged as a culturally salient theme in people’s understanding of dementia and their emplotment of dementia narratives.

In 2014, I joined an on-going younger onset dementia study. The research team, when reviewing results from their 77 structured interviews, noticed how narratives of psychological trauma emerged without prompting in 31 percent of the cases. Medical records also referred to trauma experiences in even greater numbers—either reporting patients’ preoccupation with trauma or citing past traumas while speculating on causative or potentiating factors.

I conducted semi-structured interviews with 12 caregiver and person with dementia dyads who spoke of trauma and lived in the Sydney region. And I interviewed five others who did not describe a history of psychological trauma. My interviews were broad, eliciting explanatory models and looking for what I termed “meaningful life events” rather than probing for trauma specifically. My theoretical commitment emphasized the phenomenological presence of trauma (if it arose in the interview) and its relation to various themes such as identity and establishing memorial personhood. I also analyzed the participants’ medical records. My goal was not to establish a causal relationship between trauma and dementia. I was interested in how people used trauma as an anchor, explanation, or focal point in dementia narratives.

Why study younger onset dementia? People diagnosed with younger onset dementia are likely working, have dependent children at home, and have significant financial and future commitments. Compared to older people, they have a greater awareness of the disease at early stages, increased difficulty in accepting skill and cognitive loss, and must confront different selfhood and identity changes.

Trauma is ubiquitous to being human. I don’t consider trauma in 31 percent of dementia cases to be high; although a 1997 study estimated that in some European countries at least 10 percent of the population over 60 may suffer from difficulties related to earlier traumatic experience (Bere and Miesen 1997).

Unacknowledged trauma histories pervade dementia case studies and the academic literature. For instance, in two studies, family members described how the traumatic death of a son was causative or marked the onset of the dementia (Fox 1999:509). In another study, researchers described how some Latino families interpret the diagnosis of dementia not as a mysterious illness, but as a condition unfolding within a traumatic national history and a family legacy of tragedy (Hinton and Levkoff 1999:468). Even fiction points to how the onset of dementia must be connected to a punctuated event. In the final Netflix season of Orange Is the New Black (2019), a doctor attributes the start of Red’s younger onset dementia to the trauma of being in solitary confinement for an extended period. It seems people understand the arrival of something as serious as dementia as needing a definite causal event, a shock, to set the disease, which until that moment has been waiting within genetics or a damaged brain, into motion.

Dementia diagnoses lean toward biological or medicalized explanations, and these models rarely provide sufferers and family members with adequate meaning. People will search for or generate interpretations that are less abstract, more personal, and that have a clear narrative trajectory (beginning, middle, end). Caregiver and patient support services emphasize how we should not reduce dementia, personhood, and the sufferer’s experience to their brain or genetics alone. My interviews similarly showed how people do not always experience or understand the onset of the disease in only medical terms. Two Greek families I interviewed described how their loved one’s dementia was “genetic,” but their understanding was not in reference to DNA. Rather, the dementia resulted from the dubious moral status of their parents and family line—the dementia was all but expected because they were from a bad family with a dreadful history.

Let’s consider another case.

“Tell me about Alan,” I said to Robyn after we finished our introductions. Alan recently moved to a care facility because Robyn, his wife, could no longer care for him. “He’s an only son,” she said. “He didn’t get along with his father and his father used to put him down because he always had his head in a book. His father wanted him to be a footballer, or whatever. Sports guy. Alan was a loner. If he had a book, he was happy. His father had three or four nervous breakdowns. He was in World War Two and probably also had PTSD. Before Alan was diagnosed with Alzheimer’s he was diagnosed with PTSD. He was in the Navy and he’d seen a lot of things when he was up in Vietnam. Atrocities. He watched a colleague’s decapitation. And I think that weighed heavily on his mind. He ran away from home when he was 16. That’s why he joined the Navy. He didn’t want to. He’d say, ‘oh my father caused that.’ He had a really unhappy childhood. So, when the relationship with his father got to the stage where he said, ‘I got to get out of here,’ he joined the Navy.”

We continued to chat about Alan for the next hour. A tapestry of trauma emerged. Robyn’s narrative of Alan’s life depicted a series of events and circumstances arising from accumulating trauma. For Robyn, his childhood trauma and, more so, Vietnam caused his dementia. While we were discussing how his personality changed after Vietnam she said, “If you’d have asked me 50 years ago, I would say there’s something different. But I never would’ve known that would lead to Alzheimer’s. You know what I mean?”

“That his experiences in Vietnam caused it?” I asked.

“Yeah,” she said.

The philosopher Catherine Malabou described how the behavior of subjects who are victims of trauma linked to war, captivity, mistreatment, or sexual abuse display “striking resemblances” with people who have Alzheimer’s or suffered brain damage (2007:10). Indeed, the experiences of dementia and trauma involve loss, which can include, to diverse extents and at different times: a loss of physical and mental health, losing mastery over one’s life, relationship changes, and losing one’s trajectory or grand narrative in life. With trauma and dementia, life’s absolutes, the everyday things we take for granted, are disrupted, unpredictable, or shattered. Vulnerability is accentuated and the person’s agency becomes contingent or diminished. Traumatic events and dementia can fragment selfhood, resulting in feelings of disintegration, estrangement, and isolation (see Stolorow 2011). People with dementia and a history of trauma are subject to a double burden of loss or fragmentation.

The dementia diagnostic process itself is also long, frustrating, and traumatic. “John’s father and I both started to notice funny things with John,” said Pam, a caregiver in her late 40s. “And the doctor said it was depression, which possibly it could have been. But look, I would say when his second wife left him that was the absolute dead set trigger.” John’s wife left him when he was 55 and he was diagnosed with Alzheimer’s two years later. In the years leading to the diagnosis, his doctors said his cognitive impairments were because of depression. But Pam felt they were too severe to be depression alone. “By this time,” said Pam, “the Alzheimer’s was so obvious to me. John was an obnoxiously organized person. He would have all his papers spread everywhere. He would lose his keys. He would forget to put oil in the car—twice it blew up. He’d forget his plants, and he loved his plants. He became more reclusive. After a third visit to the neurologist, I told him that he is wrong. We went to a different doctor and John was diagnosed.” Pam felt the long process, and the doctor’s incompetence, made John’s condition worse.

People with dementia are subject to extensive and conflicting diagnostic testing. The diagnosis and symptoms disrupt work, family, and social life. People fear what dementia’s progression may bring. Once diagnosed, people with dementia experience ongoing traumas and new losses, such as the ability to drive or read.

New trauma can provoke the old. As trauma narratives surfaced in interviews, I observed how people used accounts of trauma to organize experiences and explain why dementia occurred and what it means. Cognitive difficulties and traumatic experiences can be amorphous and fragmented at first, and sufferers might loop through their past. For survivors like Marcel, revisiting unspoken trauma could have been a way to understand his undiagnosed cognitive changes. Pointing to past trauma helps people with dementia and their families fix meaning amid uncertainty and change. Emplotting narratives objectifies the formless and pins any floating meanings down. In my interviews, people used trauma as an anchor or node to construct new plots and structures of meaning around the dementia and the changes at hand. This process is perhaps akin to Jacques Lacan’s point de capiton. Like a quilting point, trauma narratives can hold together dissimilar signifiers and anchor free floating, open, and overdetermined meanings of dementia.

Dementia discourses and caregiving practices too often view people with dementia as diminished beings (see Jennings 2009:426)—people in a state of disappearing, marked by absence, or are rendered non-persons. Malabou’s (2008) scholarship on destructive plasticity is helpful to think with here. She stresses the formative aspects of destruction; its sculpting and creative consequences. Destruction can also be a creative or constitutive process. The traumatized or damaged psyche is still a psyche, Malabou says. Destructive plasticity opens a space for rethinking the transformations in the self and personhood that occur for people with dementia that move beyond the narrative trajectory of loss.

I do, however, object to part of Malabou’s position when she states that dementia gives rise to a “new being” which “has nothing in common with its preceding form.” That a new persona “takes up all the room,” she says, and “whose present comes from no past” (2008:17). This is perhaps an accurate depiction of the late stages of dementia. Yet the caregivers and families I spoke with described how parts of the sufferers’ persona and identity remained, for some, until the end. Personalities changed. New traits emerged. But old, and often embodied, traits remained or intensified.[1]

“I think John maintained his personality,” said Helen. “There are features that have become more accentuated. His anxiety about safety. And his cleanliness. But he’s always been fastidious about cleanliness. But it is just a couple of little quirks rather than anything else.”

Also consider Maria, with a 10-year history with dementia. Maria’s anxiety was worsening, and she experienced chronic abdominal discomfort that doctors could not explain with CT scans or colonoscopies. At one point she became so constipated her husband took her to the hospital for an emergency enema conducted while under sedation. Her physician noted that Maria is “extremely fearful whenever she goes to the toilet.” That she repeats, “It’s so dirty.” This “exaggerated fear,” her physician said, is likely part of the dementia process. But there is more to it. Maria’s family spoke of her childhood and how she experienced traumatic events that left her incontinent for a period. Since then, she was anxious she could lose control. For Maria, the destruction brought on by Alzheimer’s did not create a new anxiety-ridden persona. It created (or mobilized) a space for her embodied traumas and anxieties to be expressed and even intensified.

A final case brings these ideas together.

Paul developed Alzheimer’s at age 63. His wife, Sara, situated his current anxieties and symptoms within his life history, which included multiple stories of emotional and physical abuse he suffered from his father. She described what she called “instances… which may shed light on his current anxiety.”

“As a child, Paul had a difficult time at school and his father was a bully,” said Sara. “His father was a boxer and he used to teach Paul to be a man, stand up for yourself, and used to box him.” Sara further described how Paul’s father punished his children for getting water outside of the shower, for example, and how he killed family pets that behaved out of line. In his early 20s, Paul was involved in a horrific accident where a drunken man staggered into the path of his car and was killed. When Paul called his parents from the police station, they refused to go and help him. “I never found out why,” she said.

Sara connected Paul’s dementia and behaviors to his history of trauma. A change caused by the dementia is that Paul now fears and refuses to go out alone. He also gets anxious when he can’t see the outside,” she said. “We’ve often talked about not wanting to go places alone, and he said he always got lost when out with his father.” He hated going out with him, as Paul said, “I was always scared. He always lost me.”

As his dementia progressed, his residential care facility said Paul experienced problems when other residents moved into his space, particularly when it involved touching his arms or grabbing. Sara’s narrative and insight contextualized his behaviors and suggested ways of easing Paul’s anxieties around his personal space and fears of being abandoned (as his parents did to him) during trips outside of the care facility. The nursing staff appreciated learning about his trauma, and they changed their interactions with Paul.

Both trauma and dementia involve fragmentation and disjuncture, forms of destructive plasticity, and the erosion of the temporal bindings that support selfhood and identity. Trauma is important for people with dementia and their caregivers. People can revisit and use past traumas to anchor, work through, and give meaning to dementia. Because traumas are often embodied and demand a narrative, a person with dementia might still feel a trauma, but not understand why. A study participant’s psychologist explained when talking about his dementia patient’s trauma that “He naturally has many unanswered questions—questions which really don’t have answers. So, he tends to loop through the traumatic events repetitively. But at each retelling, despite his cognitive issues, he seems to gain a little more composure and understanding of everyone’s role in the whole terrible affair—most particularly, of course, his own.”  

Want to read more? Check out my book “Spirit Children” and find more essays here

[1] Malabou’s reductionism also does not consider how personhood and identity are relational. We cannot answer who we are by delving within the individual or cognitive plasticity alone. We must also look outwards to our relations with others.

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