"Charlie"

Team: Deb Pang Davis, Qinyu Ding

  • December 1st: Background & Stakeholder Mapping

Date Last Updated: December 1st, 2018

 

Background

Alzheimer’s is becoming a growing phenomenon worldwide. 5.7 million Americans are living with Alzheimer’s and the number is still increasing. Not only a patient’s life will be changed dramatically for suffering from this disease, so will their families’.

Alzheimer's diseases has a profound emotional impact on caregivers from family. Research shows that 16.1 million Americans provide unpaid care for people with Alzheimer's or other dementias, 83% of which are family members, friends or other unpaid caregivers Among these caregivers, 1/4 of them are millennials meaning that they care not only for an aging parent, but also for their own family. Juggling both family and career while confronting dramatic decline of their loved at the same time, millennial caregivers frequently report experiencing high level of stress.

Stakeholder Mapping

We used stakeholder mapping to identify our key stakeholders (Figure xx) which includes a person with Early stage Alzheimer’s Disease, a primary caregiver, a patient’s family, and health professionals such as physicians, nurses, therapists and neurologists.

 
  • December 3rd: Interviews

Date Last Updated: December 3rd, 2018

Interviews

We interviewed 9 people in total ranging from their mid-twenties to late-forties, most working professionals and primarily women. The central question of our interviews: What makes caregivers feel stressed out and why.

Deb did 6 interviews and I did 3 while I was doing the second Project with another team at the same time. 

We interviewed 9 people in total ranging from their mid-twenties to late-forties, most working professionals and primarily women. The central question of our interviews: What makes caregivers feel stressed out and why.

Deb did 6 interviews and I did 3 while I was doing the second Project with another team at the same time. 

Our insights from the interviews are:

  • Caregivers overall are women but for Millennials, almost 50% are men. One interviewee stated, "women are more nurturing". One caregiver offered that regardless of gender, people are scared of the disease and tend to withdraw. It is a reminder of mortality and most people don't want to be around it. 

  • People with Alzheimer's Disease “revert” and children. The way they think and process everything is very much like a child. Emotions rule their actions. Logic and critical thinking go out the window. Reasoning can be difficult and caregivers may need to adjust their approach when interacting with their loved ones. 

  • Medication can pose a serious problem. Delusions and mood changes can be caused by medications designed to help people with Alzheimer's Disease. Even slight changes can create dramatic, negative impacts on behavior and mood. It can also be positive and help either slow the disease down and allow people to be independent longer. But getting the medication "right" can be challenging and the side effects can be scary. One interviewee wondered how doctors can just keep throwing medicine at it without looking at the person more holistically. Even the doctor I spoke with was surprised by the changes the medication made in her mother.

  • Communication is difficult between patients and caregivers. Caregivers at first don’t know what to say or how to say it or even how to respond so some try to reason, others go with the flow. The person you once knew isn’t always there so how to respond without escalating the frustrations felt on both sides?

  • Alzheimer's Disease affects individuals in many different ways. While there might be generalizations that can be made, the care, systems, and solutions designed for people with Alzheimer's Disease needs to have a personalization layer. 

  • Taking away the keys is one of the most difficult tasks. No one feels good lying to their parent, grandparent or relative but among all, it was an event that seemed to be one of the more difficult ones to resolve. Taking away the keys is taking away one's independence and when a person who has AD, especially in the early stages is aware of why (safety and the disease) but forgets the connection between driving, the car and safety, this can be particularly difficult. 

  • Moments of joy and laughter are found in music and photos. Almost everyone I interviewed observed or directly experienced a positive reaction or response when the person with Alzheimer's listened to music or looked at photographs. It is as if when listening to music or looking at photos, their loved ones become more like themselves. 

  • Organization of the day-to-day is challenging. Alzheimer’s patients have a hard time planning their days or lose their sense of time and context in the greater world. 

  • Feelings of frustration, confusion, depression, sadness, uncertainty. Many have questions especially when learning about the disease and not knowing how to manage or deal with situations they have never experienced before. Resources are plenty but finding information that may be more relevant to their situation can be more challenging.

  • Alzheimer’s Disease is a major epidemic. There is a lot we as a community do not know and no “cure”. 

  • A support system for both patients and caregivers is lacking. From banks to employers, there is a serious lack of support to assist caregivers with the range of responsibilities and burdens. Red tape makes it often difficult for caregivers to monitor or manage finances, make appointments, sell property, etc. Society as a whole seems to be either unaware or it may be perceived as a private affair. But mental health affects everyone …

  • The stigma is still very present. While most people talked with me freely, there were a few who strongly desired confidentiality. It’s understandable as it is a private affair and in today’s world, it is hard to know how others will react knowing that your mother or grandfather, etc. has a form of dementia. As a society, I fear we are sadly misinformed and every aspect from law enforcement to the grocery clerk needs to be aware of dementia.

  • Although my interviews were not covered in the presentation (I guess because I forgot  to give Deb the access to it), the results of my interviews share some common with Deb's. One of my interview cooks her mom  meals and does all the laundry everyday. Everytime he is going to have a dinner with his friends, he has to go home, prepare her mom’s meal, take her insulin shot first and then go to have dinner with his friends. When I was talking to him. I could tell that he was very stressful but had no one to turn to.

  • For the interview central question. There are different opinion between Deb and I. I think compared to ask the "How" question, "what" and "why" questions are more important. Because there you can get the motivation, goal and frustration from the interviews.

 
  • December 5th: Empathy Mapping and Personas

Date Last Updated: December 5th, 2018

Empathy Map and Personas

Since I was still working on COURAGE project, the empathy mapping and peronas were all made by Deb.

 
  • December 5th: Prototyping & User Tests

Date Last Updated: December 5th, 2018

Prototyping

Since Deb did all the scenarios and conversation flow when I was doing the other project, I am not including those parts of her work here. And Deb finished almost all the design work by the end of the second project. So I took care of the prototyping work. After trying almost 10 prototype tools, I finally found one that can realize almost all our thoughts and the one that I could figure it out - Proto.io. Prototyping a chatbot was A LOT OF work since one chat showing up and going back would require two individual interactions between three different states where I had to decide each element's position for each state so that they didn't mess up when displaying prototype. I could not remember how many days I spent just try to figure out 1 thing - automatically scrolling up when a new chat from Charlie showed up. And Proto.io kept losing the interactions I had already created so I have to redid and redid and redid.... Wow... that's ... frustrating.

Any way, here comes our 1st version of prototype! This one still cannot automatically scroll up.

User Tests

We did  our user tests on two of our interviewees. One was from Deb's, the other one was from mine. The feedback we had from them were:

  • “I like the layout as if its a text message and I like the three options for aid, particularly option two!”
    “I also like that it is customizable to the user and hypothetically to the users’ unique experience with the Alzheimer’s patient.

  • “This should be the first choice for a caregiver; not a website.”

  • “It looks good. The color is calming. But conversation is at first, a nice pace, then goes too fast.”

We also had some valuable feedback from our class:

  • Give Charlie more personality (as an owl) to appeal to Millennials

  • Onboarding is in Charlie’s voice. “Let’s see Charlie”.

  • What about having a doctor answer questions?

 
  • December 6th: Design Concept

Date Last Updated: December 6th, 2018

Journey Map

Turns out I am at least good at making journey map. Lollll. Here we go one of my best design methods.

Deb and I decided to use journey map for the final design. We decided to seperate the phases users would interact with Charlie into 3: Before using Charlie, While using Charlie and After using Charlie. Again, putting ourselves in our persona's shoes helped us find more potential frustration and goals which enlighted our final design.

Site Map

This time, we decided to highlight the coaching session. The new site map is:

 

One of the pros that I found about Finding Themes is that as a team, you can have more aspects about one story. Using this method for analysis of user interviews can help designers find more detail information to uncover the behavior patterns.

  • December 10th: Final Project

Date Last Updated: December 10th, 2018

Final Project

To keep the style consistent, Deb took care of most the design work while I gave some advices and did the prototyping. Finally figured out how to automatically scroll a screen! Yeah! Although the process was still REALLY tough.

Based on feedback from classmates, our professor, and some user testing, we made updates to the prototype:

 

  • Gave ‘Charlie’ a more visual personality.

  • Added a wee bit of personality to Charlie related to being and owl.

  • Added an example of a guided (structured) conversation flow when a caregiver activates a guided lesson.

 

Here is a link to the most recent (active) prototype:

https://pr.to/U8JLK2/

 

Always Learning

Working with Deb I can always learn a lot. Thank you Deb!

 

The last project's experience was so different from the other two. I was doing the COURAGE project while my friend Deb was doing "Charlie". I joined her after finishing COURAGE project so I had not really engaged in the process until December. So basically Deb did most of the interviews, empathy maps and personas and "Charlie" was in pretty good shape back then (I feel sorry for not being able to help back then). After I joined her, I did my best to help. Journey map, prototype (Ugh, still not enough).

Things I learned about design from designing a chatbot were (YES, I still learned a lot):

1. Chatbot is all about conversation. Design this kind of text-based application is not easier than others. I learned when I was doing the journey map. Users might be thinking "Why does this solution work but the other one doesn't?" "What can I get from Charlie?" Answers for these questions should be well integrated in designing conversation of Charlie.

2. Length of the text, tone, pace really matter in chatbot design. I tried really hard to adjust the pace of Charlie's talking (Hey, I think this is also design, right? ). After a lot of trials and errors, here we have, this improved version of  "Charlie". Of course, it's still not good. But it's much better than before.

Thank my friend Deb for always supporting me. I did the 1st version of the paper for SIGCHI, Deb helped correct A LOT of my writing which really added up her workload. I guess that's what I am going to work really hard on during the break: ENGLISH WRITING & DESIGN!

That's a wrap!

 

Anything worth doing is worth doing well

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