Empowering family caregivers for people with dementia through storytelling

Project

Tides of Time

Role

User Research

User Flows

Wireframes

UI Design

Prototypes

Team

Solo Project

Year

2023

(6 months)

ABOUT PROJECT

Tides of Time is a digital space that supports the well-being of family caregivers of people with dementia, inspired by observing my family members.

background

Growing need for home-based long-term care

Growing need for home-based long-term care

As the global population ages, the demand for long-term care is steadily increasing. In recent years, societal preferences have shifted towards home-based care rather than institutional care, as families seek more personalized and emotionally supportive environments for their loved ones. However, this shift has placed additional pressure on family caregivers, who often lack formal training and resources to manage the complex needs of dementia patients.

Challenge

How can we alleviate the burdens placed on family caregivers?

Caring for a loved one with dementia involves a range of challenges, from managing daily routines to coping with emotional strain. Family caregivers are often left to balance these responsibilities with their personal lives, leading to burnout and significant mental health challenges. The primary issue caregivers face is the long-term emotional burden of providing care without adequate support systems in place.

Project timeline

Expanding personal challenges into a societal solution through inclusive design

This project began from observing the struggles of family caregivers for dementia patients in my own family. Through ethnographic research at a nursing home and ecosystem mapping, I discovered that this issue spans across many countries. In-depth interviews confirmed that mental and emotional stress is the most significant challenge caregivers face. By applying the theory of change, I designed a digital community where caregivers can share their stories, fostering self-efficacy and building resilience through empathy and shared experiences.

This project began from observing the struggles of family caregivers for dementia patients in my own family. Through ethnographic research at a nursing home and ecosystem mapping, I discovered that this issue spans across many countries. In-depth interviews confirmed that mental and emotional stress is the most significant challenge caregivers face. By applying the theory of change, I designed a digital community where caregivers can share their stories, fostering self-efficacy and building resilience through empathy and shared experiences.

ETHNOGRAPHIC RESEARCH

ETHNOGRAPHIC RESEARCH

Dementia patients need personal, attentive care, but facilities lack the resources

Over two months at Gouverneur Hospital in Chinatown, I observed nursing home residents, mostly dementia patients, and spoke with their caregivers. While family members visited occasionally, most of the residents’ time was spent with nurses and therapists in a communal environment. Dementia patients, with their reduced cognitive abilities, received minimal attention compared to others. I realized that they needed more personal, attentive care, but resource limitations in the facility made it difficult to provide.

Over two months at Gouverneur Hospital in Chinatown, I observed nursing home residents, mostly dementia patients, and spoke with their caregivers. While family members visited occasionally, most of the residents’ time was spent with nurses and therapists in a communal environment. Dementia patients, with their reduced cognitive abilities, received minimal attention compared to others. I realized that they needed more personal, attentive care, but resource limitations in the facility made it difficult to provide.

ecosystem mapping

ecosystem mapping

Caregiving for elders relies heavily on family in a fragmented system across various countries

During an ecosystem mapping session with participants from multiple countries, we explored the systems surrounding elder care. While hospitals and public welfare services exist as part of the broader societal system, it became clear that family members are the ones bearing most of the caregiving responsibilities. Elder care involves a wide range of needs—housing, transportation, and daily activities—yet the support systems to address these are fragmented. This pattern was consistent across different countries, revealing how caregiving often depends on family members rather than formal systems.

During an ecosystem mapping session with participants from multiple countries, we explored the systems surrounding elder care. While hospitals and public welfare services exist as part of the broader societal system, it became clear that family members are the ones bearing most of the caregiving responsibilities. Elder care involves a wide range of needs—housing, transportation, and daily activities—yet the support systems to address these are fragmented. This pattern was consistent across different countries, revealing how caregiving often depends on family members rather than formal systems.

in-depth interviews

in-depth interviews

Family caregivers need a sense of recognition and often lack opportunities to share their stories

I conducted interviews with five family caregivers who have either cared for or are currently caring for loved ones with dementia. The interviews revealed that, while these caregivers experience significant mental stress, they also feel a strong sense of duty to care for their family members. A common theme was the clear need for more societal recognition, education on dementia care, and greater support from the government and community. Interestingly, during the interviews, caregivers expressed both awkwardness and gratitude for the opportunity to share their stories. This insight led me to realize that providing caregivers with a platform to share their experiences could have a positive impact on their mental and emotional well-being.

II conducted interviews with five family caregivers who have either cared for or are currently caring for loved ones with dementia. The interviews revealed that, while these caregivers experience significant mental stress, they also feel a strong sense of duty to care for their family members. A common theme was the clear need for more societal recognition, education on dementia care, and greater support from the government and community. Interestingly, during the interviews, caregivers expressed both awkwardness and gratitude for the opportunity to share their stories. This insight led me to realize that providing caregivers with a platform to share their experiences could have a positive impact on their mental and emotional well-being.

Solution

The digital archive allows community engagement, connecting caregivers through storytelling designed to support their mental health

Tides of Time is a platform I am developing to provide family caregivers with a space to share their experiences through recorded interviews. This digital archive focuses on intergenerational storytelling, enabling caregivers to reflect on their experiences and pass them down to the next generation. The platform’s multi-language support ensures that caregivers from diverse backgrounds can participate.

Information architecture

Information architecture

Design Principles

Design Principles

Reciprocity, Co-creation, and Accessibility

The design of Tides of Time is based on three core principles: reciprocity, co-creation, and accessibility. Caregivers are both contributors and beneficiaries, as they gain value from sharing their stories. The platform encourages collaborative storytelling, allowing participants to co-create the narrative. Additionally, multi-language support ensures the platform is accessible to a global audience.

User Journey

User Journey

Facilitating intergenerational storytelling to promote well-being and resilience

The interview becomes an interactive documentary format that engages the audience emotionally, fostering social change and advocacy. Its digital nature allows for flexible viewing and wider distribution, increasing accessibility and potential impact. The participatory archive empowers individuals to share their stories authentically, embracing diversity and providing a co-creative space.

interview guide

interview guide

Shared guideline to ensure ethical interview processes

To support users in conducting interviews, I created an interview guide that emphasizes ethical storytelling. The interview guide fosters openness, flexibility, and collaboration in storytelling. It empowers interviewers to ask open-ended questions and embrace silence, allowing interviewees to lead the conversation. Unlike structured interviews, this guide encourages dynamic exchanges, creating a fluid and organic interaction that deepens understanding and connection.

To support users in conducting interviews, I created an interview guide that emphasizes ethical storytelling. The interview guide fosters openness, flexibility, and collaboration in storytelling. It empowers interviewers to ask open-ended questions and embrace silence, allowing interviewees to lead the conversation. Unlike structured interviews, this guide encourages dynamic exchanges, creating a fluid and organic interaction that deepens understanding and connection.

Next Steps

Developing the website for launch

Developing the platform for launch

The next steps involve refining the platform with a mobile-first design and progressive enhancement to ensure accessibility across all devices. My goal is to officially launch the platform and begin collaborating with NGO groups to further develop it into a sustainable resource for family caregivers.

Other Projects

© 2024 Jaylynn Lee

© 2024 Jaylynn Lee

© 2024 Jaylynn Lee