Rebuild writing skills for a dementia patient

Participatory design with a caregiver

What is Participatory Design?

Participatory design is an approach to design attempting to actively involve all stakeholders in the design process to help ensure the result meets their needs and is usable. Our participant is Susan, a full-time caregiver of her mother Patricia, a dementia patient. Susan is involved in all of the research, design and testing stages.

Co-Users

Understand the experience of Sue and Patricia

Dementia patients may have impaired ability to remember, think, or make decisions that interferes with doing everyday activities. However, dementia patients and their caregivers have very different experiences based on the disease stage, symptoms, personalities, etc. Through a few detailed conversations with Sue, we spotted 2 pain-points.

The first direction requires extensive medical knowledge and daily data to make appropriate and adaptive recommendations. Therefore, we focused on the second painpoint.

Impaired writing ability affects memory and emotion

Exploring multiple design solutions, we found that writing plays an important role to Patricia’s memory formation and retain.

Writing is a big part of memory recollection and logical reasoning

Writing deeply affects Patricia’s self-esteem

This shaped out ideation direction -

How might we create a tool for the patient to reinforce memories through rebuilding writing skills, and for the care-givers to assist and learn about the patients conditions?

Co-design with Susan

Step 1. Conceptualize

Since our participate Susan is from a non-design background, we need to provide design guidance. I developed a template to categorize and conceptualize Patricia’s thoughts into the design.

Step 2. Brainstorm with Susan

After conceptualization, we screen-shared the Figma file and started to brainstorm visually with Susan.

Step 3. Build caregiver and patient usage flows

Step 4. Usability Testing with Patricia and Susan

The challenges of designing for a dementia patient

However, after the usability testing, we realized there are still assumptions and biases we hold from a non-disabled perspective. Here are my takeaways:

Use explicit UX writing to avoid any wrong memory reinforcement

Try to include the patient as much as possible

Before

Enable the caregiver to find trends

Final Prototype

Reflections

Dementia care overwhelming experience for the caregiver. To start the conversation in a more positive and compassionate tone, we asked the participant to recall a joyful memory with her mother. This conversation brought us closer and made Sue more comfortable sharing her emotions.

We quantified our questions to a scale so Sue can choose from a list of feasible choices instead of providing vague suggestions. At the same time, we gave Susan flexibility to add, change and design with us. This way, the co-design becomes efficient and thought-provoking.

The writing portion is overly less generalizable than the writing management because it heavily relies on personal preference as well as the stage of dementia.

• Concept testing with more patients and caregivers - Does this solution work for patients with varying stages of dementia and accessibility needs? Is a photo-generated prompt a good cue for memory recollection?

• Development Introspection - Does handwriting recognition work with patients with severe tremor(e.g Parkinson’s)?

• More Usability Testing

• Longitudinal study