Prepare for Alzheimer’s: Narratives to bind us together Patty Tiaoling Wang Master of Design candidate
Research
Research Questions Related Products & Services Benchmarking
Literature Reviews
Narrow Down Topic
1st Stage interviews (with Experts)
Hypothesis
Literature Reviews
Problem Identification
Online Statistical Survey Analysis
Sharpen Direction
Further Benchmarking
Narrative Inquiry
Proposal
>>>The Ageing Problem | percentage of population aged over 60, 2017 33 29 25 23
21
Brazil
25
24
26 21
21
20
22
20
16
13
Australia
25
25
9
Canada
China Denmark (mainland)
France Germany
India
8
Italy
Japan Netherlands Russia Singapore
Spain
Sweden
South Africa
South Korea
UK
US
Source: UNDESA. (2017). World Population Prospects The 2017 Revision - Key Findings and Advance Tables.Source: UnitedUNDESA. Nations. (2017). World Population Prospects The 2017 Revision - Key Findings and Advance Tables. United Nations.
(mainland)
Africa
Korea
Source: UNDESA. (2017). World Population Prospects The 2017 Revision - Key Findings and Advance Tables. United Nations.
>>>The Dementia Problem | top 10 countries of over a million seniors with dementia, 2015 9.5
4.2
4.1 3.1 1.6
China (mainland)
US
India
Japan
Brazil
1.6
Germany
1.3
Russia
1.2
1.2
France
Indonesia
1.2 Italy
Source: Prince, M., Wimo, A., Guerchet, M., Ali, G.-C., Wu, Y.-T., Prina, M., & Alzheimer’s Disease International. (2015). World ALzheimer Report 2015The Global Impact of Dementia (pp. 1–87). Alzheimer’s Disease International.
Source: Prince, M., Wimo, A., Guerchet, M., Ali, G., Wu, Y., Prina, M., & Alzheimer’s Disease International. (2015). World Alzheimer Report 2015 The Global Impact of Dementia. Alzheimer’s Disease International.
Why China?
Cultural & Sociological influences
#One-child Policy
#Unadaptable Care Mode
#Decreased Family Size
Asking help or care from outside is too expensive.
ONCE Multiple Generations Live Together
NOW Only Two or one Generation Live Together
#Public Poor Perception Senile Dementia
Crazy
Ageing = Memory Loss
You have a problem with your brain?? Mocking
Silly mind!
Don’t talk with me about that!
Shameful!
Seniors have it!
Normal Phenomenon?!
#Remained seniors & Empty-nest elders Our son cannot come back this year because of busy work, we are proud of him and we are fine.
#Extended Life Expectancy Could you tell me your age?
But we are lonely... I am 89.
I am 91.
The Future Is Calling! Image source: https://www.cagle.com/luojie/2013/08/chinas-one-child-policy-and-pension-issues
Research Questions
?
?
Q1: What do Chinese millennials think when asked about their knowledge of Alzheimer’s disease? Q2: How can Chinese millennial generation, especially the single children, more actively engage their peers and loved ones to take a proactive leap for their future health and well-being against Alzheimer’s?
Methodology Mixed research methods
Statistical Survey
Narrative Inquiry
SCOPE
DEPTH
Understand the current extent and level of AD knowledge among Chinese young population
Clarify the depth of public awareness of AD, unearth my target population’s opinions about AD.
• 103 reponses • ages 18 -37; • Dec 13 - Dec 31, 2017 • China mainland and aboard
• 4 purposive samples; • ages 24 - 30; • participated in online survey
Research | Statistical Survey Duration: 2017.12.13 - 2017.12.31; Respondence: 103 Chinese Millennial Generation (ages 18 - 38). Learn more statistical results please contact with attendee. “Yes.”
“Absolutely no.”
31.7%
17%
What’s that?
19% Yes, but little
Yes
What do you want to know more about Alz?
64
Uncertainty and low rate of respondence “who has Alz” indicate the under-reporting of disease and a sense of shame on admission.
5.9% “Yes. They are...”
“I guess no.”
64%
How to identify Alz?
Is there any acquaintance around you who has Alzheimer's disease?
27.8%
Do you know Alzheimer’s disease?
What do you know about Alzheimer’s?
34.6%
How to prevent Alz?
87
How to cope with Alz?
76
What kind of care would you give if your parents/family members developed Alz?
60 Take care of them by myself
74 Ask professional assistance.
28 24/7 private care
22
19
Send to hospital
Send to nursing home
2 Others
People and Age to develop Alz
48
Common syptoms
57
Progressive syptoms
10
Risk factors to develop Alz
14
Related treatment
10
Care knowledge and approaches
7
Professional service resource
2
Know little about this disease
34
Contrastive and fragmented results indicate the scope and depth of knowledge about Alz are superficial and obviously inadequate among young people.
Research | Narrative Inquiry CHINESE MILLENNIAL RESPONDERS
Outsiders People who might not have a relative with AD yet, but with a little knowledge and interest to know more about this disease.
Name
Age
Occupation
Knowledge about AD
Attitude at AD
Additional Notes
Xue
28
Office Lady
Almost nothing
Optimistic
She was once diagnosed with cancer before
Tan
27
Accountant
Nothing
Pessimistic
Passionate learner
Insiders People who have/had relatives with AD, and being adequate to speak their own feeling and opinions about AD from their own perspectives.
Faye
24
Graduate Student
Superficial
Pessimistic
•Grandma has mid-late stage Alzheimer’s; •Witness her mom’s hardship as the only caregiver in family
Jeff
30
Freelance
Superficial
Relatively Optimistic
•His grandpa died of Alzheimer’s
Research | Narrative Analysis Purposive sample of 4 Chinese single children (ages 24-30) who participated in online survey • Two have not Alz-related acquaintances • One had a grandparent passed away of Alz • One has a grandparent suffering mid-late stage Alz Learn more narrative results please contact with attendee.
Elder generations have their own self-esteem, this makes them kind of over-confident and try to escape from things that they don’t know.
I hope I can tell the public to step into sufferer’s shoes, not just feel that only patients are pathetic...
I don’t want to live in the fear of ignorance. But I also concern about how to tell the truth from advertisements.
Actually I don’t know what a healthy lifestyle is like. But I’m truly afraid to face the problem myself.
Contexts & Rationale
General perception of Alz in China is still in its infancy
Chinese Alz sufferers and their families feel socially isolated by the disease and are often reluctant to discuss it.
The Chinese population usually emphasizes how to cope with the disease, while easily overlooking the significance of prevention.
Young people in China bear great responsibility for supporting their parents/families in future.
Primary education of Alzheimer’s is urgent to be promoted
Design could function as a bridge to connect people affected by Alz with people who are unaffected
Pro-actions & reactions should be paid attention to simultaneously
Young people play the key role to care and plan for their families’ future health
Benchmarking
Engagement
Media
Non-profit Projects
Products
Ads: Knowledge Promotion
Gamification
Yellow Wristband Fading Memories Of Taste
MindMate
Ads: Emotional Advocacy
Professional Service in Community Free Clinics
Wearables News Simulation
Senior Care Nursing Home
Thematic Activities Flash Mobs
Popular Culture Films
Dementia Simulator
Accompanied Products
Drama Documentary
WALKS MoMA
Tabi Kaeru
Archives
Social Platform Alz Connected
Journals
Support
StoryCorps Rhino Story
Caregiver Buddy
Opportunity Map
focus: evaluate and locate the opportunity Activity-oriented High Negative Affectivity
High Positive Affectivity
WOW!!
Dimensions: Informative vs Persuasive Activity-oriented vs Care-based Persuasive
Informative
Low Positive Affectivity
Care-based
Low Negative Affectivity
Research | Affordance Analysis Caregiver Buddy Caregiver Buddy is a free App focuses on providing instant tips and support for the caregiver in areas of daily routine, communication, behaviors, activities of daily living 7/24.
Spatial
Encyclopedic
• Thematic color (purple) with organization • Minimal styling • Iconic representation • Navigation bar at bottom of screen
• Professional of tips from official organization • Log of entries hierarchied in app • Option to manage notes • 7/24 helpline to Alzheimer’s Association
Home
Entry
Tips
Take Notes
Live Help
Share
Caregiver Buddy • Click-through operation • Search engine
• Instant tips and advice • Share tips via system • Note-taking and management • App-based • Self-help entry
Procedural
Participatory
Research | Affordance Analysis AlzConnected A free online community for everyone affected by Alzheimer’s or another dementia, including people with the disease, caregivers, family members, friends, individuals who have lost someone to Alz.
Spatial
Encyclopedic
• Thematic color (purple) with organization • Navigation bar located above the content • Design for two groups • Waterfall view
• Log of entries in forum • Catrgorized forums • Archive in website • Discussion Board • Connection to other offical websites
AlzConnected • Linear format of input with no change • Search engine
• Log in to post • Randomly reading without log-in • Website based • Blog messaging
Procedural
Participatory
Research | Affordance Analysis Steller A social platform to discover, create, and share incredible stories with photos, videos, and text.
Spatial
Encyclopedic
• Photographic design • Navigation bar at bottom of screen
• Log of entries store on cloud • Database of filter, layout and typerface • Option to manage posts
Steller • Story search engine • Microphone or camera used to attach to entry
• Storybook messaging • Share tips via system • Posts management • App-based • Self-presented entry into application
Procedural
Participatory
Research | Affordance Analysis Instagram A social platform to discover, create, and share incredible stories with photos, videos, and text. Spatial
Encyclopedic
• Minimal styling • Photographic design • Navigation bar at bottom of screen
• Log of entries stored on phone and cloud • Database of editing tool • History • Favorites archive on cloud
Home
Instagram • Search engine • Live story engine • Prompts to posts • Microphone or camera used to attach to entry
• Instant messaging • Share via application • Mainly used on cellphone • Random notifications prompting entry into application • Self-presented entry into application
Procedural
Participatory
Make a story
Send to audience
Live
Benchmark Findings
Expand audiences increases the exposure and engagement
Medical content is useful but might not promote engagement
Internet technology can convey information persuasively
Stakeholders Map
When it comes to Alzheimer’s disease, design is no longer a simple design practice but a comprehensive service system that involves all types of stakeholders.
What actions could be taken?
Medical
Intervention Triangle
Financial
Social
What actions could be taken?
Intervention Triangle
Design Opportunity
Design Opportunities
A collecting and sharing platform
• Social Engagement • Emotional Support • Education
Share economy of care service
• Care Assistance • Social Engagement • Professional Guides
Health workshop in community
• Education • Professional Guides • Foster Perception
Social activities to raise awareness
• Social Engagement • Foster Perception
IoT intervention product & service
• Care Assistance • Professional Guides
Memory in the making
• Memory Archives • Social Engagement
Everyone around you has a story the world needs to hear. Maybe these stories will remind us what’s really important, and maybe, it will help us recognize the simple truth that every life, every single life, matters equally and infinitely. --Dave Isay
At this time when we have a global crisis of those who are older losing the very essence of who they are, we must rely on the young to make this caused the definition of their generation. Those who are forgetting should never be forgotten. --Leeza Gibbons
Target group
Chinese millennial generation affected by One-child Policy #OnlyChild
#WellEducated
#DigitalDrivers
Aged 18-33; Average high degree achieved; Probably single/unmarried. If married, the partner is more than likely in the same generation. Not living with parents often.
#OpenMinded
Opportunity
Target population: single Chinese millennials
A social platform with digital and printed support resources, to connect the Alzheimer’s insiders and outsiders.
Alzheimer’s Profession
Opportunity!
Alzheimer’s Insiders
This bridge could • Spread the insiders’ voice to outsiders; • Build a peer-to-peer education & network; • Correct public perception of Alzheimer’s disease.
Alzheimer’s Outsiders
Thank you!