Angela was angry—even now, when I listen to the audio recording, I can hear the bitterness in her voice. We sat in the conference room of the public library near her home, where we had met for a formal interview, and she detailed the reasons for her anger, starting right in even before I had turned on the recorder, such that the recording starts mid-sentence. Her husband, psychologically abusive, had left her. She had been unfairly forced out of her decades-long career, a position in which she had once held authority and respect, which she described as being hurtfully undercut as a result of her co-workers’ distrust. And her family was increasingly meddling in her home, particularly the organisation of its contents, which had become all the more important to her. She described coming home to changes they had made, moving items or even clearing them out. And the Alzheimer’s. The Alzheimer’s pissed her off. She was mad at it and hurt and confused at why it had “struck her”.
As we talked, I tried to tease apart the strands, piece together a timeline, stay focused on a topic. It was unclear, for example, when she had lost her job and when she’d been diagnosed, and the effect, if any, that the latter had had on the former. She would begin talking about her family and the disruption in her house, and her husband would appear in the middle, taking the stage for a while before I realised we were talking about her work again. The narratives wound outward and collapsed upon themselves.
The interview experience was, in many ways, a master class both in working with people with dementia and in interviewing. While I think I rolled fairly well with where she took us that day, only slightly and infrequently nudging her back toward the questions and topic areas that populated my carefully crafted, IRB-approved interview guide, I found myself incredibly discomfited by what I felt was my inability to verify even, to my mind, the most basic pieces of her narrative. And I was unnerved by my reaction; I tried to ascertain where it came from. Our interview was conducted fairly early on in my research, so perhaps I was (more) naïve. Although I certainly had enough sense to realise, even then, that any kind of “true” account should not—could not—have been the central priority of the process. She was the first person with Alzheimer’s disease whom I interviewed independent of any contact with her family, which could have contributed. Toward the end of our time, I asked if I could speak with her family and friends, and she readily agreed. Yet, as I drove home, wrote up the notes, and talked with others later, I came to decide that their perspective was not what I sought from my interactions with her. Over time, as I returned to the interview while also continuing to talk more with Angela, I came to see the richness of our interaction that day, of what I feel she was communicating and how she did so, and even of my own reaction to it. It remains a moment which I use to reorient myself when I am struggling with some piece of a research project, to remind me of the fluidity of experience and veracity, to ground me in the ethnographic endeavour of understanding another’s worldview and sense-making.
We had planned to walk around the arboretum that morning, Alan and Joanne Moore, their daughter Tori, and myself. But the weather was dreadful, windy, raining, and cold in a way that foreshadowed the Midwestern winter to come, and so we opted instead to drive around the vast suburban grounds. They had a favourite route, and I wasn’t driving, so I got to sit in the back seat and look out the window at the passing groves, carefully landscaped to appear both “natural” and cultivated at once. The conversation was mostly inconsequential, about whatever we were passing, the music that played (Adele and Mumford and Sons were among Joanne and Tori’s favourites that year, while Alan boasted about his Frank Zappa fandom and mocked The Beatles mercilessly), upcoming family events, and the like. It was quiet and simple, the kind of time, sprinkled liberally throughout my fieldwork, that has since lost the edge of specificity while retaining the easy warmth of the moment.
The impetus for the trip was a luncheon at the arboretum’s visitor centre, organised by a support group for people with early-onset Alzheimer’s disease and their families that the Moores’ had attended since Alan’s diagnosis and where I did a portion of my research. As we finished a loop around the grounds, we pulled into the parking lot and dashed inside, trying not to get blown away. Group members and staff were making their way toward the far end of the building, where lunch would be held, and we greeted several as we walked.
As we passed the restrooms, Joanne asked Alan if he wanted to stop before we sat down for lunch.
“Sure”, he said and started off toward the two gender-designated doors, separated by a drinking fountain. I walked with him, both because I too thought it was a good idea after my usual several cups of morning coffee and because bathrooms could be tricky to find and navigate. Alan walked confidently up to the door and was about to push it open, when Joanne called out, “Alan, that’s the women’s restroom!” He paused, his hand midair, and turned to look at her and back at the door, scowling slightly as he did so. Then he turned and walked toward the men’s restroom, where I held the door for him. As he passed me, he raised an eyebrow and smirked. “I like to keep them on their toes”, he cracked, and went inside.
When Alex was diagnosed with early-onset Alzheimer’s disease, he and Bridget decided they should travel. They focused on nature-oriented outdoor trips. When I met them, they’d already been to Alaska more than once to see the grizzlies, as Alex described it, and during my fieldwork, they would travel to South Africa and Rwanda, going on safari in the latter to see gorillas. During our conversations, they’d often reminisce about their trips, showing me photo albums and telling stories.
One afternoon, Alex started a story about one of their trips to Alaska. “That was a good one, remember that? I took the lead. We were in Alaska, and we were walking around ’cause we like the bears. And so I’m lookin’ for the bears because we’d done it before. So I say, “I can figure this out. I know how to do it ’cause I’ve seen the bear scat on the trail. So then, there it is.” He turns to Bridget, “You saw it”, and she nods, while he continues, “I just naturally got there. And then, we get into the woods there. And I hear ’em, they’re up on the rise there. I know they’re up there. I threw a rock at them”. He laughs, a great, full-throated, lively bark of a laugh. “And he threw it back! And he rolled another one down. Then I thought, ‘Maybe this isn’t so smart’.” He laughed again, as did we all. Bridget piped in, picking up his thread, “I remember you yelling. They growled and you growled right back. Grrrr! And I was like, Yow. I mean it’s one thing if you want to take yourself out, but I’m with you!”
Later, after Alex and I had gone upstairs to see his new stationary bicycle system and spend some time together, Bridget and I were talking. She had been telling me about changes in Alex and how she tried to adjust, and she returned to the story: “I try not to correct him a lot. Like in the conversation that we were having about him throwing the rock to the bear? He never did that. The bear throwing the rock to him? That never happened. Him yelling, ’cause we heard the bear? Yes, that happened. So I kinda keep quiet a little bit, and just nod, you know, but then I’ll add when the real stuff is going on. Like, ‘Oh yeah, and you yelled’ and whatever”. She laughed, quieter than before. “So, to keep his dignity going as best as possible. Because, you know, that’s the most important thing, I think. He feels like—” and she sighed “—he doesn’t want to look stupid, he calls it. He calls himself stupid, or ‘I don’t wanna look like an idiot in front of people. I want people to believe me’. You know? And there’s been a couple of times where I’ve corrected him on something, and he got real upset afterwards, and he goes, ‘I was right in what I said’. And I was like, got it.”
What can we know, in a world that so often chooses to “keep us on our toes”? How can we know it? Moreover, what do we want or need to know, and why? Although explicitly a central concern among those who populate this offering, questions of veracity are threaded throughout the collection, with even the choice of genre—stories—pointing to a degree of open-endedness, unknowability, and multiple interpretations. “Coherence without facticity” is how Athena McLean (2006) refers to the force and form of the narratives that those living with dementia may present. “It is not the actual historical facts”, she writes, “but their construction of a new story that provides meaning to the narrators and gives us clues to their lived experience” (175). She describes coherence as “a symbolic process that depends more on unity of feeling—an affective state—than on logical rules of text or even on actual past experience. It forms its own constant emotional truth” (171).
Toward the end of Annelieke’s contribution, she writes, “There is no time to ponder these questions…”, referring to a series of ethical inquiries that arise from an encounter between a care worker, a resident, and an anthropologist. Too soon, she and Robin, the care worker, must move on. What has been so enjoyable about this collection, in contrast, is its invitation to do just that, to watch the enactors and inhabitants of the stories begin to cohere across the electronic pages and to ponder the questions that arise as one begins to think with dementia.
McLean, A.H (2006). Coherence without Facticity in Dementia: The Case of Mrs. Fine. In Thinking with Dementia: Culture, Loss, and the Anthropology of Senility, A. Leibing and L. Cohen (eds). Pp. 157-179. New Brunswick, NJ: Rutgers University Press.
 I refer to Alzheimer’s disease rather than dementia in an effort to index the breadth and depth of the ideological hold that “Alzheimer’s disease” has within the US imaginary and its power among those with whom I conducted fieldwork.
Aaron Seaman is a medical anthropologist and health services researcher in the Carver College of Medicine at the University of Iowa. He continues to think with dementia in his current research on cancer survivorship. And honestly, after working with families living with dementia, he can’t imagine ever not doing so.