MEMENTO // Design Research

Design Team: Mandeep Mangat mandeep.mangat.s@gmail.com Haylee Strachan hayleestrachan@hotmail.co.uk

MEMENTO Research Methodologies for Industrial Design Course Code: INDS-3002

Professor

Peter Coppin

PROJECT BRIEF While focusing on the topic of memory loss, this assignment emphasized the project lifecycle stages that pertain to the design research process.

The first phase of the project lifecycle, discovery, (“1.

Introduction” and “2. Environmental Scan”) was supplemented by a literature review to review key issues, thinking and tensions within the field of memory loss.

Next, in order to define the problem, narrative research was selected as an inductive observational technique (3. Research Methods). Secondary sources, affected by memory loss were contacted and asked open-ended questions to prompt a user narrative.

For the conceptualizing stage, the representational techniques of persona’s and a user journey map were used to model the insights generated from the inductive observations (“4. Problem Space”).

A finalized design brief and designed solution, in the form of story boarding key interactions, and prototyping the app (both low and high fidelity) are presented in “5. Final Design Concept”.

Lastly, the designed solution was evaluated through a questionnaire sent to experts, and usability testing of the app by the network (“6. Evaluation”).

PROJECT OUTLINE

CONTEXT 1. INTRODUCTION 1.1.

1.2.

1.3.

1.4.

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BACKGROUND DESCRIPTION OF TARGET PROBLEM RESEARCH QUESTIONS AND OBJECTIVES SCOPE AND LIMITATIONS

2. ENVIRONMENT SCAN:

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2.1 EXISTING INDUSTRIES 2.2 OPPORTUNITY LANDSCAPE 2.3 MARKET OPPORTUNITIES 3. RESEARCH METHODS:

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3.1 INDUCTIVE OBSERVATIONAL TECHNIQUES 3.2 REPRESENTATIONAL TECHNIQUES 4. PROBLEM SPACE:

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4.1 PERSONAS 4.2 UX JOURNEY MAP 4.3 DESIGN OPPORTUNITIES 5. FINAL DESIGN CONCEPT: 5.1 5.2 5.3 5.4

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DESIGN CONCEPT APP DESIGN PRODUCT DESIGN MARKET ECOSYSTEM

6. DESIGN EVALUATION 6.1 6.2 6.3 6.4 6.5

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EVALUATION METHODS QUESTIONNAIRE TECHNIQUE QUESTIONNAIRE INSIGHTS USABILITY: LOW-FIDELITY PROTOTYPE USABILITY: HIGH FIDELITY PROTOTYPE

7. CONCLUSION

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8. REFERENCES

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9. APPENDIX: ETHICS APPROVAL

96 Mandeep Mangat & Haylee Strachan

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TARGET

AUDIENCE The target audience of this research project is the aging population experiencing a lower quality of life due to cognitive loss.

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1 INTRODUCTION

1

INTRODUCTION 1.1 BACKGROUND This project is addressing the decrease in the quality of life of the elderly population due to cognitive decline. This decline reduces the quality of engagements with their surroundings, including the environment and people they interact with. Studies show that social exclusion is a major cause for the declining health and well being of older adults that suffer from the natural aging process, or disease (Levitas, Pantazis, Fahmy, Gordon, Lloyd, Patsios, 2007).

1.2 DESCRIPTION OF TARGET PROBLEM The purpose of this project is to address these issues and facilitate a means where patients can express themselves and gain back their meaningful connections. By empowering these individuals with the tools to communicate and be self expressive, more meaningful interactions can result.

In order to discover opportunities, literary research will be conducted in three fields; neuroscience, regarding the loss in brain function. Therapies surrounding the long-term care of individuals suffering from cognitive decline, and emerging technologies that focus on nurturing the autonomy of the aging population will be explored.

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1.3 RESEARCH QUESTIONS AND OBJECTIVES

The aim of this project is to foster social interactions in long-term care. We intend to increase communication and quality interactions between these individuals, and the people, and environments that add value to their lives.

How is it possible to design something that can express identity, memory, and emotion?

How can we measure emotional responses, emotional satisfaction, and improve two-way communication?

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1 INTRODUCTION

How does the need for independence impact current practices?

How can these individuals regain their autonomy?

To achieve this, we hope to gain insight into this topic through investigating current research in the fields of neuroscience, therapy, and emerging technology. Through literature reviews in neuroscience, the specific role of the perception-action-cycle, theory of mind, sensory memory, and motor cognition hypothesis, of those suffering from cognitive decline, will be evaluated. Additionally, research will be conducted pertaining to existing therapies developed for those with alzheimer’s and dementia, such as Snoezelen Room Therapy (high stimulus sensory environments). The relevant emerging technologies to analyze are: cognitive orthotics, assistive robots, brain-computer interfaces, and tele-care.

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1.4 SCOPE AND LIMITATIONS

This project will be conducted within the scope of cognitive decline relative to the elderly demographic. Research will be conducted through secondary sources to understand memory loss and the extent to which it impacts the lives of those it affects due to stroke, alzheimers, or dementia. Additionally, tools and services that are currently at the forefront of assistive care will be examined.

The limitations of this project are determined by the ethical barriers of accessibility to the aging target audience as they qualify as a vulnerable demographic. Further, validation of hypothesis and design intentions will be limited. In response, expert interviews and evaluations will be conducted with the Delphi technique and heuristics.

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2

ENVIRONMENT SCAN 2.1 EXISTING INDUSTRIES

LITERATURE REVIEW

The categories of neuroscience, therapy and technology were reviewed in order to gain a better understanding of the research and trend landscape regarding solutions being currently developed in the topic of cognitive needs. The focus on this project being the relationship between cognitive loss and quality of life. The context of health and wellness is our focus.

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2 ENVIRONMENT SCAN

NEUROSCIENCE

SENSORY MEMORY

THEORY OF MIND

Sensory perception

Collective conscious perception

Stimuli retention

Knowledge of others

Short-term memory

Knowledge of self

Iconic memory

Social Interactions

Echoic memory

Imagination simulation

Haptic memory

Episodic memory

Behavioural techniques Sensory evoked responses MOTOR COGNITION HYPOTHESIS

PERCEPTION-ACTION-CYCLE

Preflexive understanding

Mentalizing process

Biological actions

Cognitive motor patterns

Action Catalog

Sensory memory/effects

Fundamental Behaviour Loss

Foresight impairment Social decline

Keywords represent the disciplines and themes that are currently practiced and trending.

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THERAPY

ENVIRONMENTAL

MEMORY

Snoezelen room therapy

Reminiscence therapy

High Stimulus Sensory Environments

Cognitive interventions

Sensory Stimulation

Memory Prompts

Therapeutic environments MSE controlled multi-sensory environments

AUTOMATION

SOCIAL

SAR - Socially Assitive Robots

Animal Therapy

Human-Robot Interaction

Companionship

Customized Robotic Therapy

Communication Therapy

Cognitive Robotics Autonomous Facilitation Perception Action Coupling

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2 ENVIRONMENT SCAN

TECHNOLOGY

COGNITIVE ORTHOTICS

BRAIN-COMPUTER INTERFACES

Automated Reminders

Wearable Orthotic Devices

Speech Recognition

EEG Scalp Recording

Virtual Assistants

Neuronal Recording

Auto-reminders

Eye Tracking

Client Mapping

Virtual Reality Augmented Reality Behavioural Prediction

TELE-CARE

ASSISTIVE ROBOTICS

Remote Monitoring Systems

Facial Recognition

Smart Home

Computer and Machine Vision

Ambient Assisted Living

Speech Recognition

Bio-medical Sensors

Machine LEarning

Forgetfulness Detection

iCat

Wireless Sensor Networks

Paro

Keywords represent the disciplines and themes that are currently practiced and trending.

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IMAGINATION AS MEASURE

2.2 OPPORTUNITY LANDSCAPE

MEMORY PROMPTS

CONNECTION

THERAPEUTIC ENVIRONMENTS

COGNITIVE INTERVENTION

ANIMAL THERAPY

COMPANIONSHIP

EXTERNAL PERSPECTIVE COMPREHENSION

REMINISCENCE THERAPY

SOCIALLY ASSISTIVE ROBOTS

PARO OMNIDIRECTIONAL CAMERA

INHIBITING ONE’S OWN BELIEF

THE O MI

HIGH INFERRIN STIMULUS SOMEON SENSORY ELSES PERSPECTI ENVIRONMENTS COGNITIVE INFLUENCE RESPONSE

SNOEZELEN THERAPY

CONTROLLED MULTI-SENSORY ENVIRONMENT (MSE)

SENSORY STIMULATIO

THERAPY

CUSTOMIZED ROBOTIC THERAPY

FACIAL RECOGNITION

NAVIGATIONAL SUPPORT SYSTEM

COGN ORTHO

AMBIENT REMOTE MONITORING INTELLIGENCE TELE-CARE SYSTEM SPATIAL SYSTEM AMBIENT CONTROL OF ASSISTED LIVING

FACIAL DETECTION

COMPUTER VISION

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GPS TRACKING WANDERING DETECTION

ACTIVE GUIDANCE SYSTEMS (COACH)

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BIO-MEDICAL SENSORS

DIGITAL INTERFACE

ORTHOTIC DEVICES

WEARABLES

COMPENSATION SYSTEMS

NE RE

2 ENVIRONMENT SCAN

OPPORTUNITY FOR SIMULATION

EORY OF IND

NG NE

IVE

Y ON

SENSORY INFORMATION 5 SENSES

SENSORY EXPERIENCE

SENSORY MEMORY TYPES: ICONIC, ECHOIC, HAPTIC

SHORT TERM MEMORY

COLLECTIVE AFTER CONSCIOUS STIMULUS PERCEPTION

WORKING MEMORY

NEUROSCIENCE

RECOGNIZING, PREDICTING, MIMICKING, & UNDERSTANDING BEHAVIOURS OF OTHERS

SENSORY MEMORY DECLINE

SOCIAL INTERACTION

PERCEPTION MENTAL PROCESSSING ACTION CYCLE FORESIGHT (+ GOAL ORIENTED) IMPAIREMENT

PHYSICAL BEHAVIOUR LOSS

MOTOR COGNITION

AUTOMATIC RESPONSE

MOTOR COGNITION HYPOTHESIS

MOTOR PATTERN

PREFLEXIVE (MUSCULOSKELETAL SYSTEM) BIOLOGICAL ACTIONS, ACTION CATALOG

AUTOMATED REMINDER

NITIVE OTICS

MOBILE IMAGING

SENSOR ARRAY

BIOMETRIC COLLECTION BRAIN-

COMPUTER INTERFACES

EURONAL ECORDING

WORD PREDICTION

FOCUS TRACKING

CORTICAL RECORDING

SIGNAL TRANSLATOR

TECHNOLOGY Mandeep Mangat & Haylee Strachan

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2.3 MARKET OPPORTUNITES

OPPORTUNITIES Ambient Intelligence System Tactile Environment Cues Animal Computer Interface Intuitive Self Management Sensory Memories Social Sensing

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Action Cat Memory Retention

NEUROS

Augmenting Perception Action

2 ENVIRONMENT SCAN

Automated Self Management Remote Monitoring

Predictive Analytics

TECHNOLOGY Social Robotics

Artificial Intelligence Tactile Environment Cueing

Ambient Intelligence System

talog

Social Sensing

Animal Computer Interface

Cognitive Interventions

Reminiscence Therapy

SCIENCE

g n

Knowledge of self and others

Intuitive Self Management

Sensory Memories

THERAPY High Stimulus Sensory Environment

Memory Loss

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3

RESEARCH METHODS 3.1 INDUCTIVE OBSERVATIONAL TECHNIQUES

NARRATIVE RESEARCH

The chosen inductive research method used to understand the complexity of and develop empathy towards those affected by memory loss was the narrative research technique. By using open ended questions, interviews were designed to inspire a user narrative. These secondary sources provided a range of exposure to the stages of memory loss; from mild, medium, to severe.

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3 RESEARCH METHODS

3.2 REPRESENTATIONAL TECHNIQUES To model the research insights generated from the narrative research we have utilized persona’s and an experience journey map.

The persona’s are interpretred user profiles - an amalgamation and synthesis of the personal stories revealed through the narrative research.

Insights regarding behaviour patterns that consist of pain points, moments of truth and mindsets were gathered in order to model the memory loss journey.

The journey map of the progression of memory loss includes the impact across all stakeholders. Through representing the problem and opportuninty space via persona’s and a journey map, further patterns will emerge to guide design criteria generation.

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4

PROBLEM SPACE 4.1 PERSONAS

PERSONA

MARGARET MACINTOSH

AGE: 46 STATUS: CAREGIVER CONTEXT: CLIENT HAS MILD MEMORY LOSS

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4 PROBLEM SPACE

Margaret is a certified nursing assistant living in Florida who takes care of elderly people who are aging in place after being hospitalized. Specifically, these people are recovering from a hospital visit such as surgery or recovering from a stroke.

Margaret is trained to provide non-custodial or non-medical care, such as helping her patients get dressed, bathing, getting in and out of bed, and using the toilet. She also prepares meals, and accompanies her clients to medical visits.

Additionally, Margaret grocery shops, provides companionship and conducts other errands on behalf of her client. She is also responsible in making sure medication is being taken and measuring the level of comfort her clients are experiencing. She is an invaluable component to her clients lives and they depend on her.

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What is it like working with someone that has memory loss?

My clients memory loss is a mild case. She regularly forgets about scheduled tasks that were spoken about the day before, it’s her short term memory that is affected. She is very capable and sharp for her age. When we speak socially, she continually reminds people that her memory is not like it used to be. She repeats this everyday, either with me or during a conversation with someone else. I tell her I know, but its not something to worry about.

I remind her to writing things down the minute it becomes available.

To try and get in the habit of writing it down the minute she thinks she might forget.

When she speaks about past events, she begins to remember more.

Like memories in a sequence, one memory leading to another.

She likes to socialize and asks to speak to her contemporaries. She does this over Skype or the telephone. When she is social, she is happier, it revitalizes her.

Memory loss does seem to be routine. In the morning hours and after naps, I notice she remembers memories from her past. In the evening hours when she is tired, her memory is not sharp. It’s like it doesn’t work as well when she is tired.

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4 PROBLEM SPACE

USER

INSIGHT ARTIFACTS REPRESENT SELF AND MEMORIES RECALLING MEMORIES IS PREDICTABLE AND ROUTINE STORYTELLING IS A THERAPEUTIC TOOL TOOLS ARE REQUIRED FOR REMEMBERING

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PERSONA

JAMES THOMAS

AGE: 54 STATUS: PRIMARY-CAREGIVER CONTEXT: FATHER HAS MILD MEMORY LOSS

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4 PROBLEM SPACE

Just last year, James’ father had a stroke and has never been the same. He has noticed that his father’s memory isn’t what is used to be. He regularly forgets what used to be simple things like having lunch together at noon. He has a hard time adjusting to the fact that his father has changed, but lives just a ten-minute drive from him, so he and his family visit him regularly more than 4 times a week.

When he can’t visit, James will speak to his father over the telephone to see how he is doing and if his father needs anything specific, like groceries or stationary. He carries a smartphone wherever he goes and is his primary source of communication both for personal and professional life.

Since his father’s stroke, James’ relationship with his father has changed. He is more aware of his father’s basic needs.

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What has been your experience communicating with an individual with memory loss?

Speaking with my father. Ever since his stroke, I have noticed that his short-term memory has been affected. I engage him by speaking about the past and start a conversation with “Remember when…” We reminisce when we meet face to face. He shares traumatic or life changing incidents with me as if they just happened.

I notice that when we speak in the evening hours, his memory is worse. He won’t remember what was planned earlier in the day. I feel the need to remind him father to write down dates and times of activities that they have agreed upon. He regularly forgets those things. When he says he will call me back, he never does - I know it is because he forgot.

My father reminds me regularly that his memory isn’t like it used to be. This is when we are discussing somthing that recently happened, or of something that I try to remind him he said.

I perform tasks, such as grocery shopping for my father, some days are more difficult than others for him because it is hard for him to move around. However, I bring him out for family occasions, such as dinner, or to visit the family home and be in the company of others. I am aware that he feels uncomfortable now that he is not as capable as he was before his stroke.

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4 PROBLEM SPACE

USER

INSIGHT FAMILY MEMBERS ENGAGE AS MEMORY AIDS SELF CONSCIOUS OF MEMORY CONDITION MEMORY RECOLLECTION CHANGES THROUGHOUT DAY SELF -INDUCED ISOLATION

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PERSONA

BRADLEY STEVENS

AGE: 30 STATUS: CAREGIVER CONTEXT: INTERACTS WITH ALZHEIMER’S PATIENT

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4 PROBLEM SPACE

Brad is married with two children and is engaged in family events on a regular basis. He has a good relationship with his in-laws and takes his children to play with their grandparents on a regular basis. Brad’s wife is an at-home-mom, taking care of their children and gets help from her mother and sister.

Brad’s father-in-law is suffering from the beginning stages of Alzheimer’s disease. He was an esteemed professional that held the highest position at the company he worked at until his retirement. Brad is well aware of the changing conditions of his father-in-law’s disease as his wife grieves over the condition of her father’s decline.

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What is your expeirence like with someone with Alzheimers?

My father-in-law has Alzheimer’s. I was told that his first symptom was his personality changing. He had extreme mood swings like being extremely agitated by little things, to very angry. It wasn’t like him at all. His personality has continued to change and now it is very flat. He is more quiet, and chooses to not engage with anyone, I think he is hiding his condition. He is also very depressed all the time.

I think that he is aware of his condition, and hides the fact that he may not remember something. When he is abnormally quiet, we know that he doesn’t understand what is going on. He has started to do things wrong, like getting dressed. Putting his shirt on backwards is another sign that his disease is getting worse. The family has been told that it won’t stop, it will only get worse and there is no cure.

He has also become extremely attached to his wife. He gets really anxious when she is not around. Whenever she is out of sight, he repeatedly asks where she is despite her having told him. My wife believes it is because he is worried that she will never return, even though she is just out walking the dog.

He has also lost his sense of taste. When I cook for the entire family he uses huge amounts of salt or an abnormally large amount of ketchup with his potatoes. It looks almost childlike. The more they get worse, the more childlike they become.

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4 PROBLEM SPACE

USER

INSIGHT EXTREME ATTACHMENT TO ANOTHER PERSON CHANGE IN EATING HABITS ARE CUES FAMILY BEGINS TO GRIEVE INTUITIVE TASK DISRUPTION ARE INDICATORS PERSONALITY CHANGES ARE INDICATORS MEDICAL INTERVENTION

This condition of Alzheimer’s is much harder on my wife and her family that him. This is because the family is aware of their father’s condition and how he is affected without even being aware that it is happening. My wife wakes in the middle of the night crying, saying it would almost be easier if he died so she can grieve him, instead of grieving him while he deteriorates.

They are beginning to look for a home where their father can be taken care of, because it is about to get worse.

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PERSONA

REBECCA HAMMOND

AGE: 53 STATUS: CAREGIVER CONTEXT: MOTHER HAS ALZHEIMERS

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4 PROBLEM SPACE

Viviene is a 53 year old professional living in Canada. Her mother is a highly developed case of Alzheimer’s disease.

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What has been your experience with Alzheimer’s?

In my case - my mother. Our relationship has come full swing and now I sit and hold her hand, trying to see a glimmer of recognition from my mother, who was extremely intelligent and well spoken, a gifted piano player, now a physical shell. One of the hardest parts is trying to connect in any way with her, to try and understand what she might be thinking, feeling. The relationship is one way only.

When my mom was first diagnosed the doctors and therapists encouraged her to write her Memoirs. She found it deeply satisfying to write and reminisce about all the things she had done, places she’d seen etc. She was really surprised a year later when we read her notes back to her, she had completely forgotten big chunks, some coming back when she heard the events described in her own words.

It was initially quite jarring to see my mom a very intelligent fiercely independent women showing the first signs of Dementia: putting blouses putting on, over top of pajamas without realizing; realizing she had forgotten how to make tea; seeing her lose weight rapidly because she would forget to eat; seeing she no longer understood what 4pm meant - no concept of day vs night;...

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4 PROBLEM SPACE

After a year recognizing she could no longer carry on a conversation, or take care of personal needs (washroom, cooking or feeding, walking by herself) having live in caregivers worked for a while. She had always been adamant she didn’t want to go into a ‘home full of decrepits’. But it was really hard on me and my sister to see her like this, sudden to always very angry, agitated, anxious, which was not her personality at all. I was seeing my mother about once a week at this time. I would usually cry all the way home after seeing her.

When the caregivers said they couldn’t handle her anymore and she required more proximity to medical care full time, we were forced to move her into a home. It was crushing, to see a once vibrant woman, being hoisted by a ‘crane contraption’ in and out of bed, being spoon fed mush food, diapers, etc. Having a conversation was no longer an option. Music and the music programs at the home do seem to spark a recognition, we can see her foot trying to tap and her eyes do go to the piano player. When I visit I try bringing my iPad with photos of things she might recognize.

She responds to occasional things , like her granddaughter walking in with a coffee, the smell triggering memories. She is calmer now that she doesn’t know/isn’t aware of what’s going on. She real seems to respond when her music is played when she goes to bed.

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USER

INSIGHT LOSING ABILITY TO CARRY CONVERSATIONS CALMNESS AS A SYMPTOM FOR NON-AWARENESS LOSS OF SELF AWARENESS LOSS OF CONVERSATIONAL ABILITY ONE-WAY RELATIONSHIP MEMOIRS AS MEMORY STRATEGY

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PERSONA

VIVIENNE LONG

AGE: 27 STATUS: CAREGIVER CONTEXT: FAMILY MEMBER HAS ALZHEIMER’S

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4 PROBLEM SPACE

Vivienne is a 27 year old accountant, living in Victoria, B.C.. While growing up, her grandparents both lived with her family. Her grandmother was always there, and played an instrumental role in raising her. Four years ago she was diagnosed with Alzheimer’s.

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What has been your experience with your grandmother?

Within the span of 6 months after diagnosis, my grandmother had gone from a completely self sufficient woman, to needing full time medical care as the progression of the disease impacted even the most basic physical functions. It was extremely difficult watching a loved one suffer with the realization of what was happening, and how quickly she was progressing.

I remembers moments of true helplessness, where my grandmother didn’t know where she was, or why she was there, and she would be screaming at me or crying, and asking for help.

In the rare, few moments that she realized where she was and what was happening to her, I would watch, again helplessly, as her facial expression turned to one of horror and anguish. That was the hardest time, when she still had those moments of understanding the situation.

I remember a clear distinct moment of realization, a moment in all the haze of what was happening to her and the stress of trying to arrange the logistics for full time care. It was during this time, that I realized I had lost my grandmother. I knew her body was still alive, but MY grandmother, the person that she was, was gone.

I remember realizing I had been grieving this loss all along, grieving the individual right in front of me. This surprised me, and angered me, that i hadn’t realized this earlier. Accepting this loss and growing to understand the new relationship I had with my grandmother, was extremely difficult.

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4 PROBLEM SPACE

Visiting with her now consists of sitting in a room with a person who doesn’t even know I’m there, or for that matter, that she’s there. She looks straight through me, almost as if she is in another world. A good day, is when there is a momentary flicker of engagement, when all of a sudden she can see me, as if she’s re-entering our world. And there is a look of recognition, and sometimes even happiness at the familiarity. Sometimes she will even squeeze my hand and try to say something, it doesn’t come out as words but it shows me she’s there and she knows I’m there.

Those are the moments I live for.

I try to help encourage her to come ‘into the present’, to engage, I tell her stories I think she might like about family members, and talk about places she would remember.

This was really hard to do at first, visiting was something I used to dread, because it was so emotionally draining, and I always felt uncomfortable. I didn’t know what to do with myself when I would visit. Sitting in a room with someone who doesn’t know you’re there and who doesn’t respond can be jarring, and forcing this one sided forced conversation always felt disingenuous and superficial.

It was always easier when i would visit with someone else, with me, so that at least I didn’t feel like I was forcing something for my own benefit. And it allowed me to hear stories about my grandmother I had never heard. Which is something I craved at that time… and still do. It helps me feel as if i’m still connected to her, helps me feel like theres still some kind of relationship there. I cling to those memories and stories of her and find myself surrounding myself with things of hers, pictures, knick knacks, clothes, furniture. I wasn’t able to let anything of hers go because in some way I felt like it would be letting more of her go, loosing more of my connection with her.

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USER

INSIGHT BEGINNING OF AMBIGUOUS LOSS URGENCY TO DISCOVER AND RECORD PAST LIFE UNAWARE OF WHAT THEY ARE THINKING AND FEELING COLLECTING ARTIFACTS THAT REPRESENT A PERSON GRIEF REACTION WITHOUT CLOSURE LOSSOF BASIC PHYSICAL FUNCTIONS

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4.2 UX JOURNEY MAP

MEMORY LOSS J MEMORY LOS MILD

John DeForest Age: 86 Status: Retired Condition: Alzheimer's Patient John currently lives in a long-term care facility. His Alzheimer's condition is at an advanced phase.

INDIVIDUAL

LEVEL OF MEMORY LOSS

Media used to recall memories

Storytelling becomes as therapeutic tool

M

Required tools to remember

Memory quality fluctuates depending on time of day

Beginning of lowered self esteem

Communication technology used to socialize

Recalling and sharing ones past

Artifacts represent self and memories

Sense of self through objects

Self isolation: resistant to going outside

Personality changes like aggression

Mood swings

New eating habits due to loss of taste

S h -g

LEGEND Mindset

Moments of truth

Areas of opportunity

The DeForest Family Age: 12 - 86 Status: Visitors The DeForest family consists of John DeForest’s daughter, Mary, her husband, and two children. Mary visits him bi-weekly, or whenever she has time in her busy schedule.

The rest of family visits on special occasions. Mary’s eldest son, Joshua, 18, visits more regularly since he is more mature and able to handle the reality of his grandfathers condition.

TOUCH POINTS STAKEHOLDERS Patients

COMMUNITY

Paint points

Doctor intervention

PSW Therapists

Aware of inconsistent memories

Family members engage as memory aids

Loss of Self Esteem

Dependency to Remember

I. Aware of others correcting mistakes in planning and agenda.

I. Technology and outside sources are more reliable, consistent, and easy to use.

C. Correcting user by reminding them of errors related to memory.

C. Family members have developed a habit of “filling the gaps” for shared memories.

I. An increasing value placed in artifacts that are designed to record memories.

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Dependency on Community

Self-isolation

Externalizing Self

Personality Change

I. Comfort zone decreases while personal space increases. Companionship is no longer sought out.

I. Artifacts begin to reflect self, relative to the dependency on them.

I. Memory loss leads to confusion, discomfort and loss of control - which are emotionally acted on.

I. Increasing feelings of lack of control.

I. Inabilit

C. Experiencing a withdrawal due to cancellations and excuses.

C. Objects become heirlooms.

C. Personality changes are cause for alarm and therefore leads investigation.

C. Overwhelmed with caregiver responsibilities.

Search for longterm care begins.

C. Heigh ment to creates f

C. Diagnosis and treatment stage begins.

Doctors

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P th

A ca

Family Members Caregivers

Urgency to find long-term care facility

Loss of

JOURNEY MAP

SS JOURNEY MAP

MEDIUM

SEVERE “reduced mental representations” Memory loss feeling isolated and detached from family

Abnormal attachment to loved one

Losing sense of identity

Loss of awareness of surroundings and experiences

.

Losing ability to carry conversations.

Second nature habits inconsistent getting dressed

Loss of basic physical functions

Mood swings, change of temperament

Encouraged to reminisce (memoirs as a tool)

Personal herapy

Aversion to are facility

not able to reference past events when socializing.

Admittance to facility

Group Therapy

Grief reaction

Family members begin grieving process

Hallucinations leading to panic and paranoia

Calm behaviour as symptom of unawareness

“Trances” induced meditative state

Unsure, Am I helping?

Am I making this easier?

Not being able to know what their thinking & feeling

Wanting to engage with memories of the individual

Uncomfortable visiting with uncertainty and fear

Ambiguous loss

Feeling helpless

Music Therapy

Palliative Care

”Lewd Body Dementia” loss of ability to talk

No Longer Self Aware

Feeling that the Individual’s Gone

Grief reaction without closure

Fear of inheriting the disease

One way relationship little to no communication

Surrounding themselves with objects of individual, to feel connected.

Clinging to stories, and memories

Craving Connection

Clinging to moments of recognition

Emotionally draining visits

Unsure how to engage individual

Shell State

f Emotional Self

Declining Connection with Community

Loss of Engagement

Loss of Social Self

Loss of Personal Self

ty to fulfill basic needs begin.

I. Loss of memories leads to a decreased sense of confidence. Fear of abandonment is extreme.

I. Inability to recall memories makes communication more difficult.

I. Inability to carry conversations makes socializing not possible.

I. The advancing of neuronal loss causes symptoms that are associated with advanced Alzheimer.

I. Increased brain atrophy causes the complete inability to communicate and interact with the environment.

I. Completion of neuronal cell death is a compete loss of self. With no memories, we do not exist cognitively.

htened awareness to persons needs. Attachindividual and loss of their independence fear and mistrust.

C. Feelings of personal loss due to extreme changes in personality. Who they once knew, are no longer present.

C. Facility environment and change relationship make interaction more painful and difficult.

C. Feelings of personal loss continue. Who they once knew, are no longer present and become more emotionally painful to interact with.

C. A sense of detachment causes individuals to cope through reminiscing.

C. The complete loss of 2-way communication causes individuals to connect through artifacts.

C. To the community, a physical shell remains.

The individual has disappeared with only a body that is left to represent them.

Loss of Self Perception

C. End of visitations.

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4.3 DESIGN OPPORTUNITES

JOURNEY MAP ANALYSIS 01 RELIANCE ON TOOLS AS AIDS

Required tools to remember

Sense of self through objects Artifacts begin to represent self and memories

Support network surrounds themselves with individuals artifacts

DESIGN REQUIREMENTS PERSONAL ARTIFACTS MUST COMPLIMENT MEMORY RECAL AND SELF IDENTIFICATION. OBJECTS COULD HAVE THE ABILITY TO RECORD PERSONAL MEMORIES FOR LATER REVIEW. ARTIFACTS SHOULD BE TRANSITIONAL FROM INDIVIDUALS TO FAMILY MEMBERS. 46

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DESIGN OPPORTUNITY 01 MEMORY RECALL TOOL A DEVICE THAT CAPTURES AND PRESERVES COLLECTIVE MEMORIES.

STAKEHOLDERS

SUPPORT NETWORK

THERAPIST

INDIVIDUAL

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JOURNEY MAP ANALYSIS 02 LOSS OF IDENTITY

Losing sense of identity.

Self isolation begins.

Ambiguous loss.

Loss of awareness of surroundings and experiences.

Fear of inheriting the disease.

DESIGN REQUIREMENTS SOCIAL AID TO FACILITATE SOCIAL INTERACTIONS. A METHOD TO REPRESENT PAST IDETNTITY/SELF. MITIGATE LOSS OF IDENTITY. PROVIDE SUPPORT THERAPY FOR LOSS. STIMULATE AWARENESS FOR ENGAGEMENT. A PREVENTION STRATEGY TO MITIGATE FEAR. 48

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DESIGN OPPORTUNITY 02 SUPPORT THERAPY A THIRD PARTY SERVICE THAT FACILITATES MEANINGFUL INTERACTION THROUGH SUPPORT AND THERAPY BETWEEN THE INDIVIDUAL SUFFERING FROM MEMORY LOSS AND THEIR FAMILY.

STAKEHOLDERS

SUPPORT NETWORK

THERAPISTS

NURSES

INDIVIDUAL

DOCTORS

P.S.W’S

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JOURNEY MAP ANALYSIS 03 COPING WITH LOSS

One way relationship, littoe to no communication.

Craving connection with individual.

Clinging to stories and memories.

Encouraged to reminisce.

Feeling that the individual is gone.

DESIGN REQUIREMENTS FACILITATE MORE MEANINGFUL COMMUNICATION. FACILITATE CONNECTION WITH OTHERS IMPACTED BY LOSS. A MEANINGFUL REPRESENTATION OF THE INDIVIDUAL. 50

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DESIGN OPPORTUNITY 03 DIGITAL MEMOIR PLATFORM A DIGITAL NETWORK THAT MITIGATES LOSS THROUGH SHARING CURATED MEMORIES.

STAKEHOLDERS INDIVIDUAL

SUPPORT NETWORK

CONTENT NETWORK

THERAPISTS

P.S.W’S

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JOURNEY MAP ANALYSIS 04 PROFESSIONAL INTERVENTION

Admittance to long term facility.

Doctor intervention with diagnosis.

Urgency to find long term care placement for individual.

Entering palliative care.

DESIGN REQUIREMENTS INCLUSIVE OF MEDICAL PROFESSIONALS. A SUPPORT AID AND INTERVENTION AID. STREAMLINE COMMUNICATION BETWEEN MEDICAL STAFF AND FAMILY. SHIFTING FOCUS FROM INTERACTION TO SENSORY STIMULATION 52

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DESIGN OPPORTUNITY 04 SPECIALIZED ENROLLMENT NETWORK A SPECIALIZED INTERMEDIARY THAT EASES THE PAIN OF NAVIGATING AND ENROLLING INTO THE MEDICAL OR CARE SYSTEM.

STAKEHOLDERS INDIVIDUAL

SUPPORT NETWORK

ADVISOR

DOCTORS

P.S.W’S

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5

FINAL DESIGN

MEMENT 54

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TO Mandeep Mangat & Haylee Strachan

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5.1 DESIGN CONCEPT VALUE PROPOSITION With complete integration between the accompanying device and platform, Memento will support you throughout all the stages of Alzheimers. Through adaptive, transitional features, the device fully connects to the app. Both the device and platform facilitate more meaningful interactions between the user and their community.

STAKEHOLDERS

MEMENTO OBJECT

PLATFORM

INDIVIDUAL DIAGNOSED WITH ALZHEIMERS

COMMUNITY (FAMILY & FRIENDS)

PSW’S & THERAPISTS

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DESIGN CRITERIA Reducing passivity and social isolation.

Increasing vitality and selfexpression.

Self-curating personalized future care.

Improving quality of life through early participation.

Improving sense of connection and communication with the individual.

Facilitating a sense of community as a source of support throughout the process.

THERAPEUTIC Reminiscence Therapy has been shown to decellerate the progress of cognitive decline.

ADDITIONAL DESIGN FEATURES SELF- CURATED CARE Self-curate your own future care through identifying preferred content for future caregivers to replay - designing your own means of enjoyment in later years.

PERSONAL TIMELINE Create a personal timeline of your life for you and others to view. Family and friends can take part through uploading pictures, videos, and voice recordings.

COMMUNITY SUPPORT Through inviting your network, you create a community that can connect with, and support one another.

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A DIGITIZED SOUVENIR NO MATTER HOW IMPORTANT PERSONAL MEMORIES ARE, THEY SLIP AWAY WITH THE ONSET OF ALZHEIMERS. PRESERVE THE STORY OF YOUR LIFE THROUGH THE INTERACTIVE PLATFORM, MEMENTO. CURATE A NETWORK OF LOVED ONES AND FRIENDS WHO CAN SHARE IN THE STORY OF YOU! HELPING TO BRING YOUR STORIES TO LIFE AND KEEP YOU CONNECTED TO THOSE YOU LOVE!

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CREATE A COMMUNITY THROUGH INVITING PEOPLE TO JOIN YOUR NETWORK THROUGH EXISTING CONTACT LISTS. BUILD A NETWORK OF LOVED ONES AND FRIENDS WHO CAN SHARE IN AN INTERACTIVE STORY OF YOU! TELL YOUR STORY IN YOUR OWN VOICE! HEAR CHERISHED MEMORIES RECALLED BY THE PEOPLE YOU LOVE. YOU AND YOUR NETWORK OF LOVED ONES CAN SHARE OLD MEMORIES THROUGH UPLOADING CONTENT. THE STORIES CAN BE FURTHER ENHANCED THROUGH THE OPTION TO ADD WRITTEN AND VOICE DESCRIPTIONS TO ACCOMPANY PHOTOS OR VIDEOS. 60

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YOU HAVE COMPLETE CONTROL OVER WHO IS INVITED, AND SET THE PRIVACY SETTINGS OVER WHO HAS VIEWING, SHARING, AND COMMENTING PRIVILEDGES. IF GIVEN PERMISSION, THOSE YOU INVITE CAN UPLOAD CONTENT, ADDING TO THE STORY OF YOUR LIFE. THROUGH CREATING A MEMENTO COMMUNITY, THOSE INCLUDED BENEFIT THROUGH PEER-TO-PEER ACCESSIBILITY AND SUPPORT. THE PLATFORM CAN CONNECT CAREGIVERS TO IMMEDIATE FAMILY MEMBERS, GIVING THEM THE OPTION TO PROVIDE RELEVANT CARE UPDATES.

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THROUGH UPLOADING AND INDICATING PREFERRED CONTENT, MEMENTO GIVES YOU AGENCY OVER YOUR FUTURE CARE EXPERIENCE.

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CONTENT, SUCH AS YOUR PERSONAL PLAY-LISTS CAN BE RETRIEVED BY CARE PROVIDERS, AND CAN FURTHER AID IN MUSIC THERAPY.

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THE PLATFORM CONTAINS INTERACTIVE FORMS OF CONTENT, SUCH AS; VOICE MEMOS, VIDEOS, AND CHAT CONVERSATIONS. CREATE “COLLECTIONS” OF DIFFERENT THEMES THAT HOLD VALUE TO YOU. THIS CAN BE SHARED WITH YOUR COMMUNITY, AND ACCESSED TO FACILITATE MORE MEANINGFUL INTERACTIONS DURING THE LATER STAGES OF ALZHEIMERS.

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THE “RECENT STORIES” FEED LETS YOU VIEW THE LATEST CONTENT THAT HAS BEEN CREATED OR UPDATED THROUGH COMMENTARY (WRITTEN, OR AUDIO RECORDING).

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YOUR COMMUNITY CAN UPLOAD CHERISHED VIDEOS AND MEMO’S THAT CAN EASILY BE LISTENING TO AT YOUR CONVENIENCE.

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THROUGH COLLECTIVELY DIGITIZ CREATES A POWERFUL TIME-CAPS OTHERS TO VIEW. RETRIEVAL OF THE EFFECTIVENESS OF R 74

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ZING YOUR LIFE STORY, MEMENTO SULE OF YOUR LIFE FOR YOU AND F THE TIME-LINE WILL ENHANCE REMINISCENCE THERAPY. Mandeep Mangat & Haylee Strachan

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5.3 PRODUCT DESIGN

WITH COMPLETE INTEGRATION BETWEEN THE ACCOMPANYING DEVICE AND PLATFORM, MEMENTO WILL SUPPORT YOU THROUGHOUT ALL THE STAGES OF ALZHEIMERS. THE DEVICE FULLY CONNECTS TO THE APP, WITH ADAPTIVE, TRANSITIONAL FEATURES.

HTTP://RHYME.NO/?PAGE_ID=2125

AUDIO COMPONENTS (FOR PLAYING MUSIC AND MESSAGES).

VISUAL COMPONENTS (FOR VIEWING PICTURES AND MOVIES).

ROUTER TO CONNECT WITH PLATFORM (ACCESS TO DATA, AND MEANS OF COMMUNICATION WITHIN COMMUNITY).

ALERTS WHEN NEW MESSAGE IS RECIEVED FROM LOVED ONES.

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SENSORY AND STIMULUS TECHNOLOGIES: ALLOWS THE DEVICE TO BE RESPONSIVE TO PHYSICAL MOVEMENTS AND SOUNDS. PRODUCES HIGH STIMULUS ENGAGEMENT, SIMILAR TO SNOEZELEEN THERAPY.

BEND SENSORS, TOUCH SENSORS, MOTION SENSORS, RFID READER

PHYSICAL COMPONENTS: FIDDLE-TOY PROPERTIES (ABLE TO BE MANIPULATED) ARE INCORPORATED INTO THE DESIGN. TEXTILE, TACTILE ELEMENTS ARE SEWN IN (IE TOUCH QUILTS, TOUCH WALLS, ETC).

HTTP://RHYME.NO/?PAGE_ID=2125

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MEME

5.4 MARKET ECOSYSTEM WELFARE TECHNOLOGY

OBJECT RHYME WEARABLE TECHNOLOGY

TECHNOLOGY (HARDWARE) COGNITIVE ROBOTICS

THER

SOCIALLY ASSISTIVE ROBOTS

SENSORY STIMULATION MULTISENSORY ENVIRONMENTS

BRIGHT

RHYME WAS A FIVE YEAR RESEARCH LIGHT THERAPY STUDY (2010-2015) FINANCED BY THE DEVICES RESEARCH COUNCIL OF NORWAY THROUGH THE VERDIKT PROGRAMME. THE GOAL OF THE RHYME PROJECT IS TO IMPROVE HEALTH AND LIFE QUALITY FOR PERSONS WITH SEVERE DIABILITIES, THROUGH USE OF “CO - CREATIVE TANGIBLES”.

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SNOEZELEN THERAPY

5 FINAL DESIGN

IPODS ARE OFFERED FREE OF CHARGE TO PERSONS DIAGNOSED WITH ALZHEIMERS WHO LIVE IN TORONTO. PARTICIPANTS RECIEVE AN IPOD LOADED WITH PATH THEIR MUSICAL FAVOURITES, SPARK AND A PAIR OF HEADPHONES. MEMORIES

ENTO

RADIO (ALIVE INSIDE)

SOCIAL MEDIA NETWORKS

PLATFORM

PHOTO SCAN APP

DIGITAL TECHNOLOGY

RAPY

ALZHEIMER SOCIETY OF CANADA (ONLINE GROUP THERAPY)

MEMORY THERAPY

REMINISCENCE THERAPY

COLLECT PHOTO/ JOURNAL APP

THE IPOD PROJECT

GRAYMATTERS APP

“MEMTRAX” MEASURING BRAIN HEALTH

THROUGH PARTNERSHIPS WITH BRIAN TRAINING APPS, ACCURATE MEMORY TESTING AND MEMORY TRAINING TESTS CAN BE PROVIDED.

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6

DESIGN EVALUATION

6.1 EVALUATION

METHODS Questionnaire Technique: A questionnaire (a list of structured questions) was delivered to various experts. The questionnaire itself, was designed to seek out three different forms of evaluative feedback: generative questions on the topic of Alzheimers, existing care facilitites, and dynamics between the various users affected; the functionality of the design concept; and, a qualitative assessment of the designed solution.

Usability Testing Technique: An assessment of the user’s ease-of-use, speed-of-use, accuracy in performing tasks, and emotional experience while using the app was acheived through low-fidelity, paper mock ups, and then again through a high-fidelity responsive digital app.

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6.2 QUESTIONNAIRE TECHNIQUE Along with the questionnaire, experts were provided with storyboard prototypes. The storyboards provided an in-depth understanding of the sequence of interactions with the designed solution relevant to the progression of memory loss, and the stages of the system itself (ie, setup, and adaptable usage). USER EXPERIENCE....?

To gather unbiased information, experts were requested to answer the generative questions prior to veiwing the storyboards.

GENERATIVE QUESTIONS From your experience, what is lacking in the existing care facility environment?

What do you consider to be some of the biggest obstacles that Alzheimer patients experience?

What is being done to address the emotional needs of the individuals suffering from Alzheimer’s?

What do you consider to be some of the biggest sources of discomfort for the family and friends of the patient?

Describe the typical relationship like between a PSW and the family of a person diagnosed with Alzheimer’s?

What are the current modes, and processes of communication between medial staff and the community?

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FUNCTIONALITY ASSESSMENT Does this design remind you of other products that are currently available or in development?

Do you think the design (both object and interface) would provide meaningful interactions between the individual and others?

Do you think that the design will support the community in coping throughout the different stages of Alzheimer’s?

How could providing a direct mode of communication between the family and the PSW benefit the PSW throughout their tasks?

What other forms of input could be used to provide a ‘sense of self’ of the individual?

How adaptive do you foresee this design being with current residents?

What can be done to improve the adaptability, learnability, and memorability of the design?

What therapeutic features can be included into the design for those in later stages of Alzheimer’s?

Do you foresee any error scenarios or opportunities for misuse regarding the usability of the design?

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QUALITATIVE ASSESSMENT What aspect of the design achieves the greatest benefit?

What is the lease useful feature of the design?

In terms of impact, can you list the storyboards from most valuable to least valuable Do you think the therapeutic properties of the design could help to prolong the individuals entrance into full time care?

Any additional comments?

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6.3 QUESTIONNAIRE INSIGHTS

The platform will provide comfort to the community, through providing insight into the individuals state (based on platform activities) A ‘sense of self’ can further be prompted with time-capsule input, where the user can record themselves to play back at a later time.

Additional therapeutic features to investigate for inclusion might be memory tests that use the media the users have to previously in-putting.

Could this technology be beneficial to other populations?

Project Coordinator at Circle of Care, Patient and Caregiver Advisory Board Member.

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6 EVALUATION

One of the biggest obstacles for Alzheimer patients is feeling isolated from the community.

The direct mode of communication between the family and PSW will be helpful in allowing the personal support worker to plan their treatment approach.

Interactions and an increased sense of community could be created with allowing online groups interactions with other patients.

Accessibility Designer, Currently Completing PH.d - Dementia Master of Design - Inclusive Design/ OCAD U.

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The platform could create a global connection between those who have dementia...sort of like an online support group. That way they’ll know they’re not alone.

The curating and ‘sense of self’ promoted through the design would allow a greater connection between the PSW and the patient. The care provider would see the person for who they were across time, and not just view them as a task.

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6 EVALUATION

Preserving ‘sense of self’ through the app gives the individual (and family members) a sense of dignity.

The platform and device features will greatly improve visitation through allowing younger people to emotionally adjust to the situation.

You could create themes - based on phases of their life - or whatever interests them.

Employees, The Alzheimer Society of Canada

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6.4 USABILITY TESTING:

LOW FIDELITY PROTOTYPE

User’s responded well to the different login options (i.e. social media accounts included).

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For many, the journey to the single pos screen was not as intuitive as we had predicted. How to sort through post channels needs to be addressed.

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6 EVALUATION

A low-fidelty, paper prototype of the app’s functions was mocked-up for the purpose of evaluating the user experience journey. Using this prototype method allowed for quick adjustments to be made during the user testing process. These sessions were facilitated to gather feedback in the form of notes and photographic evidence.

User’s responded positivley to the “Remind Me” function. Many intuitively understood its purpose.

Users were unclear of the audio button, and interpreted it as a video clip. A storytelling post function will be added.

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6.5 USABILITY TESTING:

HIGH FIDELITY PROTOTYPE

Users suggested that there be more options for linked social media accounts after logging in, and throughout the app.

The current interface is appropriate for, and meets the need of the network. However, users that are older in age might 90

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6 EVALUATION

Feedback from the low-fidelity paper prototype informed the direction and refinement of the digital interactive version of the Memento app. A link was sent out to users to test the user experience, and user interface on their own smartphones.

We acted as moderators during this process and promoted feedback with generative questions.

have difficulty with the current user interface. An alternative version of the app should be made to address their usability needs, consideration should also be given to simplifying some of the features.

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CONCLUSION Our next step is to return to the design phase, and continue protoyping while synthesizing the feedback recieved during evaluation.

For the platform, the app features need to be simplified and the interface made more readable to address specific user needs of the aging population.

Therefore, our next steps for the app will include designing an alternate, simplified and more readable interface. The JACOB Neilsons 10 usability Heuristics for Interface design will be applied in order to better evaluate the new user interface for the intended user. Additionally, an environmental scan of existing apps that are aimed towards the elderly will help inform our interface design.

Next, the evaluative phase revealed potential features for the platform.

These included; a “Time Capsule� that the user curates for their future self; memory tests, or memory games; and fostering the potential for various communities to form (such as online interactions between patients, or communitiy outreach).

Lastly, for the object, we will use the Wizard of Oz method to simulate the objects functions and evaluate it against our user group. Based on the feedback from this process we will begin the next prototype of the object considering other design elements (beyond function, such as look, feel, weight, and durability).

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REFERENCES RESEARCH REFERENCES Beech, R., & Roberts, D. (2008). Assistive technology and older people. SCIE websitebriefing paper, 28.

Bishop, N.A., Lu, T., & Yanker, B.A. (2010). Neural mechanisms of aging and cognitive decline. Nature, 464 (7288), 529-535.

Cardinaux, F., Bhowmik, D., Abhayaratne, C., & Hawkley, M. S. (2011). Video based technology for ambient assisted living: A review of the literature. Journal of Ambient Intelligence and Smart Environment s, 3(3), 253-269.

Daly, J. J., & Wolpaw, J.R. (2008). Brain-computer interfaces in neurological rehabilitation. The Lancet Neurology, 7(11), 1032-1043.

Levitas, R., Pantazis, C., Fahmy, E., Gordon, D., Lloyd, E., & Patsios, D. (2007). The multu-dimentional analysis of social exclusion.

Pollack,M. E. (2005). Intelliegent technology for an aging population: The use of AI to assist elders with cognitive impairment. AI magazine, 26(2), 9. http://designresearchtechniques.com/#/ RHYME project

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VIDEO FOOTAGE SOURCES Video footage and filmed interviews - from Alive Inside Documentary, with permission to use only for class presentation purposes from a foundation representative.

Audio Interview played over video - recorded by us at interviews at Alzheimers Society Toronto, with consent and permission from those recorded.

Footage of app - recorded web footage off our app in use.

Footage of object sensors - used rescource footage from the RHYME project database, tool to help illustrate functions and sensors (in use) that our concept would incorporate.

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