Family Maps: At the Intersection of Design and Dementia
An essay about conducting Human-Centered Design research on populations living a parallel life to my own.
This Is not a Podcast
I was driving through the Mojave desert in a handicap-accessible minivan that my mom purchased from a friend who had just lost a parent when I heard these words:
“We know how to take care of our elders. There’s only one licensed nursing home on the reservation, otherwise they have to send them off. They don’t belong out there. We’ve always taken care of our own.”
The minivan had come from California, and I was driving it back to New York. With the press of a button, the minivan’s right bucket seat smoothly rotates and slides out of the car, lowering to wheelchair level. It can lift up to 300 pounds. My mom wanted this seat for my grandmother Annelies, I call her Oma, who is at best 90 pounds. Oma has severe Alzheimer’s disease and cannot walk, talk, bathe, toilet, or feed herself. Since taking on Oma’s care, my mother, who is perfectly healthy, has been tethered to her home. Even with help from my sister, aides, and hospice nurses, it is still difficult for my mom to leave the house for more than an afternoon.
We all had hopes that this minivan might change that. That’s a lot to ask of a minivan, I know.
“We’ve always taken care of our own.”
The audio track I was listening to was from a user interview conducted by my colleague, Sabrina Fonseca. The speaker was a Navajo man, the CEO of a Navajo nursing home, with whom we had spoken to learn about his expertise in providing elder care, both personally and through his nursing home.
I work at a company called Coforma (formerly &Partners). We’re a digital design agency, and we use Human-Centered Design to work on ethical projects that help people.¹
[1] Time for a shameless plug! Coforma is a dream company to work for. We work remotely. Everyone on the team is a genius snowflake. We take on interesting projects that matter. AND we have a Slack channel dedicated to our pets (ok that’s fairly generic, but it’s a joy to read). Need I say more?The interview was one of nearly 150 interviews we conducted in due diligence for the Health and Human Services (HHS) / Indian Health Service (IHS) Health Information Technology (HIT) Modernization project.
Sidebar: That’s HHS IHS HIT, and our workstream was about Human-Centered Design, so we added on HCD. What is up with all the acronyms in the federal government? Our documents were labeled: “HHS IHS HIT HCD,” which Sabrina started calling HIHH:
That’s an acronym of acronyms! We put the kibosh on that pretty quickly. I have heard that the cool way to name this would have been H3I. But we did not do that.
And for those of you unfamiliar with HIT, it refers to the computer program(s) your doctors and nurses use to record information from each of your visits. It’s also where they schedule appointments, view your lab results and prescriptions, and file claims with insurance. If you’re real advanced, it allows you to log into your very own patient portal to see all of this information yourself. If you’re thinking, a “portal” doesn’t sound advanced at all, I can do that for literally any shopping website, you’re right, it’s a pretty low bar. If you’re also thinking, you know, my doctor’s office does have a patient portal, but it tells me next to nothing, and I never use it, you’re also right. Health IT is a problem. Universally.
Since I’m off track, this is probably the right time to tell you that I live with my mom. (I haven’t found a cool way to disclose that detail yet. Dating is interesting.) Let’s see how closely you’ve been following. Who are my roommates? Select all that apply.
[A] My mom
[B] My grandfather
[C] My grandmother
[D] My sister
[E] My brother-in-law
[F] My adorable baby niece
[G] A random renter from the internet
If you selected A, C, and D, you have been reading closely. If you selected *every* box, you’re either intuitive or sadistic, but either way you are correct, and I just revealed some plotlines. Why oh why did we sign up for this real life sitcom?²
[2] Rephrase: why did my sister and her family sign up for this real life sitcom? The truth is I returned home with a serious back injury, and my family took care of me through recovery. But now I’m more of a helper and less of a patient (most of the time).
To Be Both Modern and Human
“We’ve always taken care of our own.”
That’s not a modern concept. In fact, that’s a concept as old as humanity. Only in modern times do we have to exchange money for familial care.
How then does that value statement fit within a government modernization project? How can I, as a designer, ensure it’s baked into the process?
On the IHS project, our prime objective was to define the needs of a “modern” HIT system, and not just any modern HIT system, but one specifically designed for American Indian and Alaska Native communities. To do this, we had to focus on uniqueness: what are the needs that aren’t “out of the box”?
We also wanted our report to be explicitly helpful to the IHS in advancing towards this future state. We developed a rubric built with use cases to be used in the vetting and bidding process. The IHS now has a tool to say, “Oh, you have a patient portal? Cool, show me how it fulfills this need: As a patient, I want to receive lab results with an accompanying ‘plain English’ description so I can understand the terminology and implications.”
It was important to construct these in a tech-agnostic way, to leave room for unforeseen innovations.
Beyond use cases, our final report contained a review of the ecosystem, archetypes, and seven service blueprints that cut a cross section of the population to illustrate a diverse array of AI/AN health care needs. The service blueprints we developed for this report were really a mix of service blueprints, journey maps, and user personas. They were highly personal and narrative-driven, built from a collage of true stories we heard in interviews.
Taken together, the seven storylines follow the full arc of a patient’s life, from birth to death. They include a high-risk pregnancy, caring for minors, going to college, visiting the ER, suffering from chronic diseases, receiving veteran’s benefits, and, yes, dying.
The final story is about Leslie, who cares for her father, Bill, when he is diagnosed with dementia. This one is a deeply personal topic for me. As I mentioned, my mother cares for her mother, who has severe Alzheimer’s. Oma’s disease has permanently changed my family.
For all my researchers out there, you know what that means: I’m not the right person to conduct interviews on this topic. I am too biased. I have some pretty well-formed beliefs about how to care for elders and how the system works. My personal knowledge, however, also galvanized my sense of empathy, and it gave me insight. This was helpful in constructing a realistic and human-driven storyline. Indeed, many aspects of my family’s experience were common with Bill and Leslie’s. Still, we kept a strict eye on my potential for projecting.
Nursing Homes Are Not the Answer
So there I was, in the Mojave desert, in my mom’s minivan, listening to Sabrina’s user interviews about elder care. I was driving East, en route to New Mexico. About three hours of the drive ahead would be spent skirting the Southern edge of the Navajo reservation. If I took a left, I could have spent three more hours driving North before exiting the reservation.
“There is only one licensed nursing home on the Navajo reservation.”
Oma was in a nursing home for two years. Before he had a stroke, my grandfather moved in with my mom, and could drive to Oma’s nursing home to see her every day. My mom would visit the memory ward on weekends with her guitar and sing “You Are My Sunshine” and other folk tunes.
In addition to being a guitar toting hippie, my mom is an organizational psychologist. She specializes in corporate governance and change management. She has had a lot of success in her career with clients like NPR, National Geographic, and Save the Children.
Her wealth, among many other factors, afforded our family privileges that few have. There was a good nursing home five minutes from my mother’s house. My mom had an extra room for her father to move into. The nursing home offered food and customs familiar to Oma. These privileges and many more would be extremely uncommon if present at all for the families I was learning about, living on rural reservations.
Even so, we had cause to feel unlucky. Once Alf (yep, that’s my grandfather) had a stroke, he needed assistance with practically everything. He wanted my mom to drive him to the nursing home often. In fact, he couldn’t go anywhere without her. And my mom wouldn’t leave him at home alone.
With this change, it became practically and emotionally impossible for my mother to continue working. Fate handed her a different job. She became a full-time caretaker for her parents. That’s when my older sister and her husband moved in to help out, and together they decided to bring Oma home.
Caring for elderly parents at home is not a common thing for a wealthy, suburban, East-coast-elite type of family to do. In fact, I was pretty opposed to it, and it has a multitude of drawbacks. For one, my mom stopped working. Care planning is a stressful and full-time job that involves inviting professionals into your home at all hours. Having guests over is difficult. Death is very present, which makes many people uncomfortable. And last but not least, we have to watch yesterday’s DVR of Colbert every. Single. Night. Full volume. 8 o’clock p.m. No exceptions. It’s hard.
In the book Sapiens, Yuval Noah Harari describes this phenomenon: if you ask a parent to describe the act of child rearing, task by task, it sounds miserable, yet they also describe parenthood as the most joyful and fulfilling part of their life. It’s kind of like that. Despite challenges, it feels good to be with my grandparents. I want them to experience the comfort and the safety of their family and home as they live out the remainder of their lives.
This seems to be a shared human experience that reaches across the boundaries of culture, location, and wealth. We learned that leaving the reservation to go to a non-Tribal nursing home is extremely undesirable, not to mention unhealthy. Elders in non-Tribal nursing homes are confronted with foreign language, food, and customs. Whenever possible, Tribal members want to let their elders age in place, and to help with the process.
Respect for the End of Life
Respect, duty, and reverence towards elders is a theme that came up universally in our research. In AI/AN cultures, elders are wise and sacred emissaries of the past, not to be taken for granted or forgotten.
Of course, respect for elders is part of many cultures. I live with my grandfather, and I love him, and I try to show him respect, but the truth is that I slip. His tastes represent a value system and a time that I would often rather forget.
In contrast, in Alaska, in South Dakota, in Cherokee country, all over, we saw a fundamental respect for elders manifested so thoroughly that it shaped the community and, yes, even the healthcare system. If an elder is waiting in line, they go first, no matter what. The community will bring elders firewood in the winter. One registration admin said that they will take extra steps to contact elders’ insurance provider, outside facilities, and social workers to ensure they don’t get lost in the system.
At Southcentral Foundation, which is a major outpatient hospital in Anchorage, Alaska, they set up Elder Advisory Councils to provide feedback directly to leadership on programs for the over 200 Tribes they serve.
In some locations, elders will host lunches at the local clinic to raise money for a neighbor — like if someone’s house burns down. The promise of stories from the elders is enough to pack the cafeteria of a small town clinic and successfully raise the funds. This, I’d say, is much cooler than a Kickstarter.
We heard many staff members say, “My favorite part of work is interacting with the elders.”
Leslie’s Journey: Caring for a Loved One
I want to return to the story of Leslie and her father, Bill. After months of research, our job was to collate these unique experiences into something representative, interconnected, and realistic. The story of elder care covers a few Health IT themes:
- Giving a caretaker proxy access to patient information;
- Aging in place;
- Home visits;
- End of life planning;
- And interoperability with outside organizations like hospice and funeral homes.
Across these topics, we wanted to explore how a modern Health IT system might improve care given Bill’s situation.
I knew a lot of what was coming Leslie’s way. I knew Bill’s diagnosis. I knew the uncertainty of not knowing how long her life would be on hold. I knew the doctor would diagnose dementia, unsure of its stage for language reasons (Oma is Dutch, Bill speaks his native language³). I knew the hospice nurse that would come to their house and the devices they would bring.
[3] We did not ascribe specific Tribes or nations to any of the actors in our stories.Mitigating Bias in Research
We developed a process for using my experience. As mentioned, I did not join the interviews. However, I did write Leslie’s story leveraging my personal experience. We flagged the pieces of the story that did not come directly from user interviews and reviewed each iteration of the storyline, in depth, with Tribal representatives.
Here are some examples of things I got wrong in the first version of this storyline:
- Bill falls on a walk, and his neighbor calls an ambulance. In review, we learned that Bill would never go on a walk alone. He would never be alone, really. He would likely be with his wife, Dorothy, or at least with a family or community member.
- Bill and Dorothy kept a strict traditional diet. We learned that dementia is negatively correlated with traditional diets (and positively correlated with Western foods), so that was an unlikely grouping of factors.
- There was a Tribal hospice provider. We learned that hospice is almost always provided by programs off the reservation, but that those programs operate adjacent to the reservation. These aides and nurses usually know a fair amount about AI/AN culture. The main improvement needed was to communicate Bill’s end of life plan to his primary care provider and the Tribal funeral home.
Other factors that set Leslie’s experience apart from that of my family were ruralness, income level, access to Medicaid and Medicare, and of course the lack of a handicapped minivan.
This project provided constant lessons. Of course, I learned about the IHS’s healthcare system and the treaties that shaped it, but also about structuring our research to deliver something honest and effective. This was a priceless opportunity to develop a practice of caching the things I “know” to make room the truths of other people.
Want to Work with Us?
We want to continue to improve our processes to include more representation from end users in our team. It’s the right thing to do. In the words of Mike Monteiro, empathy is a placeholder for inclusion. And inclusion is a value we hold high.
We are continuing our research in January and hosting a code-a-thon next year. If you are interested in working with Coforma(full-time, not just for this project), we want to hear from you. You can email us with questions or a cover letter and resume at hello@andpartners.io.
This post was updated 9/27/2020 to reflect the company’s name change.
