Person-first — Designing for a (future) dementia inclusive society

Master of Design Thesis — Preliminary Research Documentation

I have always been a nostalgic person, I cherished moments captured in photographs — whether it was images of my own infancy or memories featuring friends and family. I would look at these images andI couldn’t help but weave stories around them. I’d imagine the laughter, the shared glances, and the conversations frozen in those framesIt fascinated me to think about what might have transpired in those moments — what brought people joy, what made them laugh, and whether they faced similar struggles to those we experience today.

Are they the same person they are now?

As a child who moved around frequently, memories became my anchors — fragments of what I did, whom I encountered, where I was, and, most significantly, who I was. The transient nature of my lifestyle made it challenging to stay connected with people or preserve every token of their presence. Often, when I reflect on my past, I perceive my life as unremarkable, lacking in noteworthy stories. However, this perspective shifts when I delve into photographs or recollections of specific individuals. These moments serve as a vivid testament to the richness of my life, transforming what may seem ordinary into a remarkable adventure.

My extensive vault of memories encapsulates the essence of who I was, who I am, and the potential of who I will become.

During the initial phase of conceptualizing my thesis, I explored diverse thematic areas ranging from education for students with special needs, the intersection of design and education, the correlation between design and mental health, to the convergence of design and neurodivergence. It was during the course of my extensive research into these domains that I encountered the intriguing concept of lifelogging, a phenomenon that particularly captivated my attention, given my pronounced inclination towards nostalgia. Subsequently, this exploration led me to delve into the realm of the quantified self, wherein I probed into the potentialities of leveraging acquired data for the purported enhancement of human memory, which is often susceptible to lapses.

These pursuits left me with a sense of dissatisfaction, prompting a reevaluation of my focus towards addressing a tangible issue. This realization led me to recognize the heightened significance of memories for a specific demographic — individuals encountering challenges in generating new memories and recalling existing ones, notably those affected by dementia. Given the multifaceted symptomatology associated with dementia, it became apparent that memory loss stood out as a predominant concern and one that warranted focused attention in my investigation.

I dedicate this thesis to my two grandfathers.
My paternal grandfather, who had dementia due to Parkinson’s passed away in March 2023. In contrast, my maternal grandfather, carrying the Parkinson’s gene, has not exhibited signs of dementia or the disease. This personal connection not only sparks contemplation about my own genetic predisposition but also prompts a reflective consideration of the societal and environmental conditions I would aspire to navigate if confronted with such a diagnosis.

For the thesis I conducted extensive secondary research to understand dementia from a non-medical perspective. The medical industry is hyper-focused on seeking cures and improving functional well-being rather than improving emotional well being as well.

Overview of Secondary Research

Landscape

Currently there are 50 million people living with various forms of Dementia around the world. This number is said to triple by the year 2050. Dementia is a general term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life.

Personhood

Personhood is the quality or condition of being an individual person. This includes having a continuous sense of being the same person over time. Personhood is also formed by social interpersonal relationships with society. Traditionally dementia is considered a threat to personhood because of the loss of memories and difficulty in remaining the same person that the individual was before their diagnosis. But this loss of sense of personhood is not solely attributed to the individual but also to how society treats them differently from how they were treated before their diagnosis. When an individual is stigmatized, for example as, ‘different’ or ‘demented’, they can often take on society’s view of themselves. This may lead to a self-fulfilling prophecy causing feelings of failure, resulting in self-depreciation and loss of self. Individuals with dementia also tend to be socially isolated from society after being deemed incapable of being part of society post diagnosis.

Threat to personhood

1. Stereotype threat
   It refers to the fear or apprehension that individuals from a particular group experience when they are at risk of confirming a negative stereotype about their group. According to Goffman (1986), when an individual is stigmatized, such as being labeled as ‘different’ or ‘demented,’ they often internalize society’s perception of themselves. It can lead to decreased performance and increased anxiety in situations where the stereotype is relevant. (Steele & Aronson, n.d.) Traditionally dementia was viewed as a process of inevitable decline, to the point of loss of the properties of being a person, such as self (Surr, 2006). This can potentially result in a self-fulfill
2. Social Isolation
   Due to the stigmatization of people with dementia, they are often socially isolated in their homes or care facilities. Individuals with dementia often experience a faster deterioration of their condition when their social interactions are limited. Loneliness is defined as the subjective experience of feeling socially and emotionally isolated. (Donovan et al., 2016) Research has demonstrated that in cognitively intact older adults, loneliness can impact brain physiology by elevating the amyloid burden, a biomarker of Alzheimer’s disease (AD) dementia.

A combination of stereotype threat and social isolation cause a person with dementia to deteriorate emotionally and cognitively. It reduces the quality of life of the individual drastically

Invisible Disabilities

Numerous accommodations exist within our societies to address physical disabilities, ranging from wheelchair-accessible ramps in public spaces to the utilization of braille script to assist individuals with visual impairments. In contrast, there is a notable scarcity of accommodations tailored specifically for individuals grappling with invisible cognitive disabilities.

Dementia-inclusive society

A society in which people with dementia and their carers fully participate in society and can belong. It is a society where they enjoy respect, freedom, dignity, equality, accessibility and quality of life. Striving to create such a society would help individuals with dementia reduce their steep decline of quality of life and their cognitive abilities.

The Research

The steps to take to create a dementia inclusive society would be to create better accommodations in physical environments to reduce attitudinal and environmental barriers that hinder their full and effective participation in society. With this thesis I intend to speculate about a dementia inclusive society where accommodations in public spaces help individuals to be more social, interact with more people in public spaces and feel confident in using such spaces. Using personhood as the foundational concept, I intend to design solutions that promote cognition and social interaction by creating opportunities for them to be a part of society again.

Engaging in everyday activities such as taking the bus, going grocery shopping, or simply crossing the road can transform into stressful tasks when compounded by memory loss, cognitive impairment, and a lack of accommodations. However, as society becomes increasingly accepting of these challenges and endeavors to establish safer and more conducive environments, individuals with dementia are more inclined to venture outside their homes without fear. This, in turn, enables them to foster social connections while navigating tasks that demand higher cognitive functions.

Through extensive literature review, on-site observational research, expert interviews, focus groups and co-design workshops this thesis will aim to speculate and design for a dementia inclusive future. It will explore the themes of personhood and person centered care for creating solutions for accessibility in social environments.

Primary Research

I am volunteering at the Memory Hub, an initiative led by the UW Memory and Brain Wellness Center, functioning as a community center designed to be accommodating to individuals experiencing memory loss. The primary objective of the Memory Hub is to facilitate connections among individuals with memory loss and their families. Offering a diverse array of in-person and virtual educational, supportive, and wellness programs, the Memory Hub encompasses activities like support groups, memory loss classes, and workshops addressing various aspects such as caregiving, creative arts, technology, among others.

I have been conducting field observations at the Memory Hub and associated events since October 2023. I am now an active volunteer of the community and have participated in various events.

Legacy Letters
This program pairs a student with an individual with early stage dementia to help write a letter about their life, this could be a letter that talks about their legacy, or answer some tough questions about life. Over a period of 6 weeks I have gotten to know these individuals and their life stories. I have also learnt that being vulnerable in a community is not easy but extremely rewarding.

SOAR — Shared Outdoor Adventures for Resilience
It is a program for individuals with early onset dementia and a partner (family member, caregiver or friend). This program involves going on 3–4 mile hikes and other outdoor adventures in the Seattle area. I have had multiple conversations with formal and informal caregivers of people with dementia to understand what the challenges they face on a daily basis are.

Interviewing an individual with dementia and his informal caregiver
I had an interview with an individual with dementia and his sister mainly about transportation and regular activities like grocery shopping. I gained multiple insights into how they navigate through their days living with memory loss. I understood the nuances of the difficulties faced when going grocery shopping. Although very healthy physically the individual feels nervous about going out by himself because he is worried about what people around will think of him and about how he would feel helpless and confused in these scenarios.

Expert Interviews
Through the Memory Hub I have had the opportunity to interact with various subject matter experts including people who conduct day programs for individuals with moderate dementia, neurology experts, volunteers and social workers. This has helped me broaden my understanding of dementia — and how there are different perspectives and aspects of dementia that need to be looked at.

Memory Hub Open House
I was a part of the Memory Hub open house which was attended by over 100 people with dementia and their partners. I was in charge of a community weaving project that garnered a great amount of participation and interest. I had the opportunity to speak with a lot of caregivers to understand what their biggest struggles are and how they keep their care receivers cognitively active and busy.

Future Plans

In the Winter Quarter, I aim to conduct

1. Expert interviews
   The Memory Hub has connected me with multiple organizations which work with different aspects of helping individuals with dementia. With these interviews I aim to understand what the existing problem spaces are and what solutions are being worked on. With these interviews I also aim to gain fresh perspectives on how dementia is looked at.
2. Interviews with individuals with dementia
   To better understand the issues faced by individuals with dementia and their caregivers on a daily basis, what and how issues are tackled and to build rapport with them for conducting workshops
3. Participatory Design Workshops
   Multiple workshops with individuals with dementia and their caregivers. These workshops will inform my research and the specific directions I pick, they will also help the individuals with dementia be involved in the process of creating the solution.