process book
Kevan D’Agostino design faculty spring: tak yakuwa and don williams fall: casey hrynkow date april 16, 2015
Together is a system that brings families closer. It helps bring light, laughter and positivity to a time that seems uncertain and overwhelming; it helps families who have a loved one suffering with Alzheimers, cherish, love and connect together.
Table of Contents 1 INTRODUCTION Executive Summary Design Proposal
7 SECONDARY RESEARCH Literature Review Precedence Review
21 PRIMARY RESEARCH Observations User Testing Dialogue And Co-Creation
41 SYSTEM DEVELOPMENT Initial Design Development Final System Design
119 BRAND DEVELOPMENT Brand Identity Campaign Language Exhibition Design
145 appendix Bibliography Ethics Application
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introduction Executive Summary page 3
Design Proposal page 5
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Executive Summary
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he idea for my grad project was inspired by my mother, a caregiver at Czorny Alzheimer’s Centre who noticed over her
years of experience that residents with Alzheimer’s Disease often exhibit signs of boredom and loneliness due to a lack of engaging opportunities and appropriate activities. As well, she noticed that families encountered difficulties connecting when visiting their loved ones, which made visits frustrating and discouraging for both. This Project in collaboration with Czorny Alzheimer’s Centre, looks at the possibilities around using interaction design to help improve the connection between Alzheimer’s residents and their families. The Together system addresses these problems by using inter-
action design as a tool to encourage better connection. By combining two well known methods of Alzheimer’s care, play therapy and reminiscence therapy, Together allows families to create personalized activities using curated photographs and other media that help provide a more engaging and meaningful experience. Together helps provide comfort and fun time during visits, a time that is normally confusing, uneasy and uncertain for both parties. 3
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Design Proposal problem: This project looks at two problems often overlooked in Alzheimer’s care: 1. Residents living with Alzheimer’s suffer from boredom and loneliness due to lack of engaging opportunities and appropriate activities inside care homes and 2. Families often feel apprehensive when visiting their loved ones with Alzheimer’s, and have little to no way of connecting when away. goal/objective: To support an engaging and meaningful experience for Alzheimer’s residents and their families thesis statement: How might interaction design help improve the connection between family, residents and staff to facilitate a more successful form of engagement and connection? Target audience: My project focuses on residents diagnosed with Alzheimer’s in the early to mild stages of the disease and the family that supports them. I am looking at this specific population because in the earlier stages of the disease, it is shown that lack of engagement plays a critical role in the day and that they are more likely to feel the symptoms of loneliness and boredom due to the fact that they are still fairly aware of their surroundings and have a higher level of cognition. 5
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secondary research Literature Review page 9
Precedent Review page 17
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Literature Review
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he literature review consists of publications collected through various forms of Alzheimer’s research. The scope
includes research journals, books, popular media and various articles and video, which delved into disciplines such old and new methods of Alzheimer’s care, Gerontology, technological development in Dementia care, psychology, design and biology. They included subjects wide enough to fully understand concepts within Alzheimer’s care and the initatives behind improving these concepts. The perspectives gained from these readings expanded the thoughts of my project’s goals and possibilities, greatly increasing how I approached both primary and further secondary resources. 9
“There is an unmet need in geriatric facilities for stimulating dementia patients, as well providing hard-core data for proving increased cognitive abilities with technology.”
person with Alzheimer’s Disease and his/her relatives when they are cut off from a shared past” while also touching on happiness and storytelling as ways of approaching the disease.
Six Views In A Box
One case study from the Danish School Of Design really showcased the power of the design process, showing how important the connection between families and their loved ones with AD actually was. It was inspiring to see a problem that has been overlooked in the past, come to the forefront of such a devastating and perplexing disease. Six views in a box were made by ten students. During ten weeks the purpose was to help Alzheimer patients and their families to make everyday life easier. The project was an exploratory design process and with empirical researching on different possibilities in collaboration with Alzheimer patients and affected people close to them. The project staged different scenarios and used people’s knowledge and experiences to help, use, reflect and identify the problems that appeared. Those scenarios looked at questions such as “What effect does it have on the relation between a
I’m Still Here
John Zeisel’s book I’m Still Here, based on his groundbreaking work at Hearthstone Alzheimer Care, offers hope. It presents a different way of perceiving, understanding, coping and caring for someone with Alzheimer’s. It teaches the possibilities of a positive relationship between the afflicted and the caregiver based on memories, learning, stories and visits. Dr Zeisel has extensive knowledge and has tested non pharmacological approaches to living with the diagnosis that incorporate art, music, environment, love, caring, and touch to stimulate the memories. The book makes a strong case for a positive approach, for an attitude based on the present, “living in the “now” and the recognition that the afflicted partner is still a human being with substantial remaining capabilities.” In his book three environments are proposed, social, physical and pharmacological that addresses what Dr Zeisel calls the four A’s – agitation, anxiety, aggression and apathy. The book is critical of the usual treatment of these conditions and is gives specific suggestions of how to build a new relationship with loves ones and the care team that surrounds him. There is a wonderful chapter which describes new relationships that encourage the seeking of the potential of change. Many of these suggestions would improve our normal day to day communication and living, even without Alzheimer’s. Caring For A Person With Alzheimer’s Disease
The information in this guide come from other caregivers and from medical research funded by the National Institute on Aging (NIA). It covers areas such as Understanding Alzheimer’s Disease, Caring For People With Alzheimer’s Disease, When You Need Help, The Medical
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This study gives proof that technology can help bridge the gap between patients and staff to improve the quality of life for the cognitively impaired by addressing cognitive functioning and quality of life for people diagnosed with dementia via technology. Research has shown that technology instruments such as iPods, help stimulate those with dementia. This study focuses on innovative devices such as iPads and tablets, which are mainstream and easy to use, cannot only help determine stage of dementia, but also provide stimulation to improve cognitive functioning.
Side of Alzheimer’s Disease, Coping With The Late Stages of Alzheimer’s Disease and how to take care of yourself while a loved one is affected. The Coming Neurological Epidemic
Biochemist Gregory Petsko speaks at ted med and makes a convincing argument that, in the next 50 years, we’ll see an epidemic of neurological diseases, such as Alzheimer’s, as the world population ages. His solution revolves around having more research into the brain and its functions. He discusses our chances of getting ad after the age of 65 exponentially growing and about how 50% of people at the age of 80 will develop ad. He goes on by speaking about the fact that by the year 2050 over 100 million people in the world will have Alzheimer’s Disease; this problem is growing and we are not ready for it. He also discusses the costs associated with ad and the hidden costs to families taking care of their loved ones. He values the cost of this care at 200 billion a year, with around 17 billion hours spent on unpaid work per year by family caregivers.
The Outcomes Of A Technology Supported Leisure Activity In People With Dementia
This paper presents the results of an evaluation of a technology-supported leisure game for people with dementia in relation to the stimulation of social behavior. In this study they explore the additional impact of technology-supported leisure activities on behavioral outcomes of people with dementia in a nursing home and daycare setting in comparison to a traditional leisure activity. The technology supported game aims to stimulate social behavior and interaction among participants using its design features, including a TV, radio, telephone and treasure box. A mixed-method research design was applied. In conclusion, they found that a technology-supported game can stimulate communication and social behavior among players with dementia. Moreover, it helps activity facilitators in making activities more person-centered.
Mobile App Development And Usability Research To Help Alzheimer’s Residents
This study discusses the usability of mobile apps and tablets and the increasing need for tools that meet the needs of the patients, families and caregivers. Highlighting the idea that music and photographs play an important role for family members diagnosed with Alzheimer’s disease (AD), even those with severe AD. Tablets and iPads, which are prevalent, can be utilized with dementia patients in portraying favorite music and family photographs via apps developed in close partnership with geriatric facilities. This article shows anecdotal research that shows that non-verbal late-stage dementia patients who become stimulated when iPods played their beloved tunes. It highlights the idea that “there is an unmet need in geriatric facilities for stimulating dementia patients, as well providing hard-core data for proving increased cognitive abilities with technology.”
Designing Interactive Life Story Multimedia For A Family Affected By Alzheimer’s Disease
In this paper a design project is presented involving primary end users who have declining cognitive abilities such as memory, communication, and problem solving. They are designing interactive multimedia with personalized life stories for individuals with Alzheimer’s disease. They conducted a case study to discover and
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“Technology can help bridge the gap between patients and staff to improve the quality of life for the cognitively impaired.”
address the design challenges for this project. A particular challenge was a limited ability to communicate with the primary end users. In this paper, they present design methods that take this challenge into consideration. The goal was to contribute insight into designing for users with cognitive disabilities, and to present methodologies that are useful for designers who have a limited ability to interact or communicate with end users.
covers everything from the large-scale site layouts of new homes to the simple details and furnishing of individual rooms. It is built to be accessible and works both as an information source to new designers and as a tool to consolidate wide ranging ideas for experts in the field.
Loneliness Twice As Unhealthy As Obesity For Older People, Study Finds
This pack of tips and advice is families struggling to understand and cope with their loved one with AD. The Alzheimer’s Association believes that maintaining activities with people who have Alzheimer’s disease is important. Highlighting that activities may help prevent other illnesses, help them feel like they are important people in the family, and encourage a sense of meaning in their lives. Alzheimer’s disease affects parts of the brain involved with mental and physical activities. However, it is still possible to have memorable times, filled with happiness, and joy with your loved one. We hope this packet provides you with ideas for enjoyable activities to do with your loved one at home or when visiting them in a nursing care setting.
Alzheimer’s Association: Activities With Your Loved One
Loneliness can be twice as unhealthy as obesity, according to researchers who found that feelings of isolation can have a devastating impact on older people. The scientists tracked more than 2,000 people aged 50 and over and found that the loneliest were nearly twice as likely to die during the six-year study than the least lonely. Compared with the average person in the study, those who reported being lonely had a 14% greater risk of dying. The figure means that loneliness has around twice the impact on an early death as obesity. Poverty increased the risk of an early death by 19%. The findings point to a coming crisis as the population ages and people increasingly live alone or far from their families. A study of loneliness in older Britons in 2012 found that more than a fifth felt lonely all the time, and a quarter became more lonely over five years. Half of those who took part in the survey said their loneliness was worse at weekends, and three-quarters suffered more at night.
Dementia Village
cnn’s Dementia Village video showcases a cutting-edge medical village, called Hogewey. It’s the only place of its kind, on its scale, anywhere in the world. All of the residents living here have dementia. It’s village-like set-up allows for residents to walk freely throughout the town and visit familiar areas such as grocery stores, libraries and the hair dresser. According to the Alzheimer’s Association, 6 of out 10 people with Alzheimer’s disease will wander and become lost. Fortunately at Hogeweys, getting lost isn’t a concern. There’s only one way in and one way out of the village -- and that doorway is kept staffed and locked 24 hours a day. A few different modifications are made at Hogewey, for example, when a resident walks up to the elevator, a motion sensor detects the elevator, opens the door,
Better Care Homes: Designing For Dementia
In this project they mapped out the diverse cognitive, sensory and physical needs of care home residents and related these needs to design guidance. The work is presented in an open access web tool that works to share knowledge and influence the design of future and existing care home environments. The site helps designers and providers balance user needs without losing the feeling and characteristics of “home”. The website
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“One of the most productive things you can do to help keep a person with dementia from feeling lost, frightened, or agitated is to help them live as familiar a life as possible.”
and automatically takes the resident to the other floor when they step inside and trigger a weight sensor. Studies have shown that music is processed differently in the brain than many other sounds and that “the words and lyrics are activated on the left side of the brain in the language areas, while the tune and melody are more right brained.” Long after patients with dementia lose the ability to carry out a conversation, they can still nod their heads, clap their hands, and stamp their feet. Music brought joy to the residents’ lives. In the video they were able to remember classic Dutch songs they learned when they were children, even if they have difficulty remembering much about their current day. One of the most productive things you can do to help keep a person with dementia from feeling lost, frightened, or agitated is to help them live as familiar a life as possible. To that end, at Hogewey, residents live in one of seven different
“lifestyle” categories: religious, cultural, urban, homemaker, trade/craft, upper class, and Indonesian. The moods evoked by the furnishing, decoration, and art in each home create an experience reminiscent of each individual’s formative years.
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Precedent Review
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he approach for the precedent summary was to understand the products and services that approached Alzheimer’s care
in traditional ways and why they were important to someone suffering with the disease. However, the primary objective was to focus more on the products and services that were breaking the mold. Although the use of technology is new to Alzheimer’s care, the few projects or apps that touched on this subject followed similar methodologies to general Alzheimer’s care. Connection, reminiscence and stimulation were all prominent in their direction to help reduce bore-
dom and loneliness in Alzheimer’s residents. 17
The Forest Project
Alzheimer’s Australia Vic, worked with game developers Opaque Multimedia, to develop a prototype virtual forest video game designed to create a sensory therapeutic environment enabling people with dementia to experience and interact with the soothing virtual reality of a forest. The game is currently in prototype stages and is seeking funding through crowd-funding. The idea is that there would be no complicated buttons or coordination needed with the use of the Xbox One and its Kinect sensor. The aim through the use of this sensory therapy process is to “enable people living with dementia to experience a sense of awe, wonder and fun in their everyday lives.” Microsoft has supported the project with Xbox One and Kinect development tools. The Kinect allows users to control the environment in natural, intuitive ways – a wave of their hands or a simple command can produce wondrous changes in the virtual world. Promenade App
Promenade is an iPad app designed for family members and caregivers to use when visiting loved ones living with dementia or related illnesses. Created by experts in the field of Gerontology and Therapeutic Recreation, Promenade is a tool that can help stimulate conversation, encourage reminiscence, and make personal visits more rewarding and engaging. Promenade presents groups of photographs based on user selected topics; however, it’s much more than just an image search. Every topic is accompanied by a list of conversation based questions, as well as related topic suggestions to ensure there’s always something to talk about. Conversations will flow with ease as you and your loved one nostalgically discuss memories inspired by the countless photos and questions provided. Bring Promenade along for your next visit, and revisit a life of memories, together. IPad Engage
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“Reminiscence helps those with dementia know that they are not being left behind, feeling that they are still part of the world and contributing to their life cannot be underestimated.”
iPad engAGE aims to inspire Creativity through iPads using various Digital Apps. It is directly focused around individuals living with Dementia, with the purpose of improving engagement and digital confidence. The iPad engAGE programme is designed through a Person Centered Approach, combining familiarity and imagination. Art forms included through Apps will range from Poetry, Storytelling, Visual Arts and Music, facilitated in both one to one and a ground set up. All of the senses will be incorporated with the emphasis on process over creative outcome. iPad engAGE intends to inspire curiosity and innovative thinking. Airloom
Airloom is a device concept for collecting, sharing, and passing down stories and conversations around the family dinner table. It is a prototype designed by Russ Maschmeyer at the School of Visual Arts in New York. The concept gives hope to an interactive solution outside of the traditional tablets. What inspired me about this particular project was the simplicity of the interaction. It allowed the user to interact with content as if it were in physical form.
Alzheimer’s care. By using wooden blocks, and physical objects, Osmo allows interaction outside of the iPad. Because residents are more used to physical objects, the possibilities of using the app would be possible.
Memory Box Network - Our Big Box
Our Big Box is an online reminiscence system provided by The Memory Box Network, a dementia related charity based in Scotland. It uses pictures to help connect family and friends through conversation and reminiscence. Personal pictures can be uploaded to the system and combined with others drawn from a growing library of images provided by digital archive partners. Osmo
Osmo is an educational gaming system that works with the iPad to transform the physical space in front of the iPad into a digital game board. Osmo is specifically targeted to kids, however the games help increase problem solving, creative thinking, visual, spatial and abstract-thinking skills, which could be translated to
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primary research Observations page 23
User Testing page 29
Dialogue and Co-Creation page 37
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Observations
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hat was found through observation was that current activities can sometimes be inappropriate, un-engaging, and
even offensive to a resident’s intellect. This would result in unconstructive experiences that lead to frustrations. I also found that the majority of these activities that were currently in place did not adapt well to the different stages of the disease. In fact, many of the people in the early stages of Alzheimer’s would simply push these activities aside due to them being un-engaging and simply “childish.” Just as much, activities were not adapted well to families visiting, where scenarios that occurred far too often were ones where family would visit, try to engage, wouldn’t know how, and would ultimately be frustrated and discouraged. This required staff to intervene and be directly involved for the success of a connection to happen. 23
“My loved one is way too intelligent for this, she looks at it and already knows that something isn’t right.”
These mind maps depict several emotional stages involved for caring for someone with Alzheimer’s, and what is hindering successful connections for families when visiting
Observations with intervention: When given a variety of “sensory stuff” (ie painting materials, mismatched socks, singing animals. She picks up the sensory stuff and finds the textures feel good but wants to know what its for and what she should do with it. She is only engaged for one minute. She loved looking through the socks and matched all twenty pairs. Later she went to the painting materials and completed a picture with colors matching - added dots + lines inside the image to show texture and dimension.
brief profiles of residents + engaging with and without activities for 5 minutes (observational)
resident 1: Resident: Lady in moderate stage of Alzheimer’s, normally very pleasant and speaks and answers and responds frequently. She is very mobile, social and friendly. Observations without intervention: sitting on couch, keeping another resident company and listening to music on TV. She is playing and touching and wiping everything around her with the apron she has on - remains sitting down.
resident 3: Resident: Man in his early stages of Alzheimer’s, Can be very talkative, social and is aware of people and his surroundings, but has a sudden burst of anger and can be violent.
Observation with intervention: When given magazine/ talking doll/furry square mitt - she starts talking to the doll and picks it up to cuddle it. Puts it down beside her. Asks what the furry mitt is, feels it and then puts it down. Picks up magazine and looks at each page
Observations without intervention: pushing around kitchen chairs, feeling them, turning them upside down, moves from chair to the table and starts to feel the tops then the legs of table and looks around to see if there is anything else he can push.
resident 2: Resident: Lady in her early stages of Alzheimer’s. She is very independent with care and is a very social and pleasant person. Has family that visits
Observations with intervention: when giving him a car magazine, a bendable PVC pipe building blocks, he stops and starts to move the bendable building blocks and puts them together. He piles them onto the table and starts to read the car magazine. He looks through each page and sits down at the table he was once moving.
Observations without intervention: Walking around cottage looking for something to do - getting discouraged with other residents who are moving furniture and paces back and forth trying to find someone to carry on a conversation with her.
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“Daughter comes in to visit her mom but because her mom is not vocal. She always sits at the table with her but doesn’t know what to do. ”
and sit on the couch and listen to music together.
Scenarios of family visiting (observations)
Scenario 1: Daughter comes in to visit her mom but because her mom is not vocal, she doesn’t have any type of conversation to connect to her. She always sits at the table with her but doesn’t know what to do.
Scenario 7: Friend will come to visit and he will sit at table and show her little presents, and she sits and smiles at him the entire time. She loves babies so he will bring them to her while they sit together at the table. She never speaks but when he gives her all these little goodies she never stops smiling
Scenario 2: Daughter comes in with her dog and tries to have conversation with her husband but he is more interested in what is on dvd. She will sit down behind him to try to see what he is watching but you can tell she is upset that there is no conversation or connection. She lets the dog run around and gives him treats to feed the dog which makes him happy which makes her happy. She takes him out to the garden to look around which he enjoys for a short period of time (if she sits him down in the bench he will stay but if she lets him walk he wants to come back in with everyone . He loves cards but he will only play in his room.
Scenario 8: Daughter and son comes in to see mom very little and when they do they are very awkward and are until comfortable and do not know what to say or what to do so they stay for maybe 5 minutes and are gone Scenario 8: Companion comes to visit lady and she takes her outside of cottages to walk to give her new surroundings. The companion will come and sit to watch a musical DVD with her as well.
Scenario 3: Son and his wife come in to visit the mom and always go in kitchen to make tea. They will sit at the table and he will talk to her like this. They have the same routine to sit down and have tea and talk. Scenario 4: Daughter comes in and because she can’t connect verbally goes into her room and reorganizes and brings in new plants and pictures and then she will take her mom out of the cottages to sit with. They always leave to get her out to see new surroundings and will watch whatever is going on out in main building. Scenario 5: Daughter comes into visit mother and if she is sitting at the table ( she is usually colouring or painting or sorting) she will sit down and start colouring with her or help her fold or sort. If she is just walking around she takes her into her room and she will show her all her art work hung up in her room and will take her mom hand in hand outside the cottage to walk Scenario 6: Husband will turn on his wife’s favourite CD
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User Testing
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our alzheimer’s participants engaged with 9 apps with different activities and cognitive skill levels, difficulties, ones
that were suggested by case studies and others we thought would be interesting to assess. The residents engaged with activities such as word matching, puzzles, drawing, fill in the blanks and speech. The results were very successful. With the help of Czorny staff we found that not only did residents actually engage with the iPad, they instinctively knew what to do. When given applications like fill in the word or drawing, with just small encouragement, they were able to fully interact with the application. This new research was a breakthrough in terms of the possibilities for my project in the digital space. I synthesized the results from these residents and found that success was based on three variables: Audio, Color and Interactivity. This discovery allowed me to start to understand what was possible from an interactive standpoint in terms of resident’s engagement. 29
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Results from the user testing were synthesized and organized by categories of success in color, interactivity and audio.
These observational notes were written by a Czorny staff member and highlight four residents interacting on an iPad with various applications chosen by myself and staff, which were based on suggestions through secondary research and cognitive ability predictions.
his finger through the water but did not. I showed him how to do it and then he moved his finger through the water. I brought down the bar which had all the frogs insects etc and told him to touch them so they would go in the pond. He tried to tap them but the images were too small for his hand and fingers and he kept closing the bar which had all the fish on it. He continued to tap them and he continued to make the feature not work because his fingers were too big. I started to make the fish swim into the pond and he was laughing when they made a plopping sound when they entered the pond.
resident 1: Live butterflies: I asked him to place his finger on the screen and he hesitated over and over again. I showed him how to place his finger on the screen and he did but he tapped his fingernail not his finger and then he finally got the butterflies to appear on the screen. I told him to hold his finger in place and he did which caused the butterfly to stay on his finger. He smiled and lifted his finger up and then put in on the screen again. He laughed and said what is this ?
Ginger: I showed him the buttons to make the cat have a shower or dry the cat or brush itâ&#x20AC;&#x2122;s teeth and he was able to touch the buttons well. The buttons were bold and had dark rings around them and he was able to push 3 of them making the cat do some things. I told him to say his name to the cat and he whispered his name and nothing happened. I told him to speak louder and he seemed hesitant to do this but he said he did say his name and the cat talked back. He smiled and shook his head and said â&#x20AC;&#x153; that was enoughâ&#x20AC;?
Egg Heads: When the game began I told him to tap the egg when it would shake and he just watched and listened. I noticed that he was taping to the music that could be heard as the game was playing. I told him to tap the egg and it took him two tries before the egg changed into an animal. He was not pressing hard enough so I moved the iPad closer to him and he was more successful in changing the egg into a character. After 5 changes he said that was enough.
Magic fingers: I showed him the coloured images above the screen and I told him to pick one he liked from all the separate squares. He did not push the squares but instead he went to the very middle of the screen and pushed the arrows that showed left and right arrow signs. I showed him all the selections again and he did the same thing again. I selected the coloured images and told him to put his fingers on the screen. He moved his fingers over the screen and different colours lite up the screen. He smiled as he was doing it. I changed the images and colours and he tapped the screen.
Endless reader: He seemed to be fascinated with the images and the music and all the little characters when this app started. I told him to swipe the cards until he found one he liked and he scrolled through the cards very quickly and it went into a totally different game. I asked him to do it again and he picked a card and he followed the concept of filling in the puzzle with the letters ok for the word CAKE. He did not want to do another one when I asked him.
resident 2: Live butterflies: I told her that If she put her finger on the screen she could catch a butterfly. She just watched them fly around and did not put her finger on the screen. I
Ifish pond: I put the water with only a few fish on first and he just looked at it and started to smile. I told him to run
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showed her what would happen if she placed her finger on the screen and she watched intently while the butterflyâ&#x20AC;&#x2122;s were landing on my finger. I told her again to put her finger on the screen to catch a butterfly and I guided her finger on the screen and she left it there to let the butterfly land on her finger. She did not move it allowing the butterfly to beat its wings. She looked very intrigued.
egg to see what would happen. I showed her how to tap the egg and when it transformed into an animal and made an animal sound and spoke out the name she had the biggest smile on her face. I looked at her and asked her if she liked this and she shook her head quickly saying yes (she has never spoken any words ) so all her cues are done with her expressions. I continued to tap the egg and she continued to smile and was enjoying the music and the colourful characters. I took her finger and told her to tap the next egg but she would not.
Finger painting: I started with a blank canvas and swiped my finger over the canvas and different clouds of colours appeared. She watched very closely at what was happening and I told her to swipe her fingers over the screen but she just looked at the coloured image that remained from previously swiping it. I did it again and told her to do it also but she looked hesitant to start. She did not swipe the screen.
Endless reader: When this app started she stared at all the movement that was happening and I watched her eyes moving from one character to the next as they were in a parade formation playing music and playing musical instruments. When the Rolodex of cards appeared I told her to pick one that she liked but she just stared waiting for something to happen. I picked the card CAKE and I told her to touch the letters that spelled CAKE but she did not want to do this.
Egg heads: When I turned this app on the music caught her attention and she looked closer at what was happening. I told her that these were eggs and for her to tap the
Ifish pond: I started with a simple pond with just a few fish swimming and put on the background that would prompt peaceful zen type music to play. I told her this was a fish pond and to look at the fish. She stared at the screen and watched the fish go by. I told her to run her fingers in the water and I showed her to swipe the screen. I took her hand and I placed it on the screen and she started to move her fingers fanning the water and making it ripple. I had to encourage her to do it again which she did briefly. I then brought down the bar to show the fish and lilypads and she watched while I touched them and made them jump into the pond. I told her to touch the frog but she did not, I told her to touch the lily pad but she did not. She seemed to really be fascinated by all the pond activity but seemed to be content to just watch the fish swimming around and the dragonflies flying around. Ginger: When the cute little cat appeared on the screen
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“I showed her how to tap the egg and when it transformed into an animal and made an animal sound and spoke out the name she had the biggest smile on her face”
she looked closer at the screen and I told her to push the button to give the cat a shower. She just watched and I showed her which buttons to push and she could see what would happen when I did it but she didn’t push any. I did it again and told her to push the button to brush the cats teeth but she just stared at the cat. I took her finger and we pushed the button to give the cat a shower and she smiled but she did not do it on her own
the screen allowing the butterflies to land on her fingers. She once again commented “ I can’t believe that” Eggheads: When the coloured eggs came up on the screen I told her this was an egg and for her to tap it and see what would happen. The egg would shake to catch your attention and she began to tap it but she was not doing it hard enough to start the game, I told her to tap harder and she did and this transformed into an animal with sound and colour and spelled out the name. She followed along with the person talking and repeated what they said and spelled. There was a arrow to the right which I told her to push and she did and this brought on a new egg. She waited until it shaken and she tapped it and made it transform into a new animal. She thought the image which was brown and was a moose was ugly and she didn’t like it but the next one was a white rabbit and she didn’t mind that one. She continued to push the arrow without further instructions 3 more times before stopping. Her comment was that this was very strange.
Magic fingers: I showed her all the different colours and images that appeared at the entire top of the screen and told her to pick a colour she liked. She just looked at the screen so I selected a colour and images and then I told her to put her finger on the screen. She did not do this so I put my hand on the entire screen which caused colourful hearts to fill the entire screen and she looked closer as this happened. I told her to put her hand on it and she did and she left it on the screen and watched all the images come out of her hand. I then told her to touch the screen and she did which caused another colour and images to appear and she swiped her fingers on the screen. I changed the image to a white tornado type image and she touched the screen with all her fingers and left it on the screen making the tornadoes to come out of her fingertips. The music playing on this app is very memorizing and calming and she continued to keep her fingers on the screen and watch the different colours and images on the screen.
Endless reader: The screen showed a ( Rolodex of cards) and I told her to swipe with her finger and to find a card that she liked. I showed her how to swipe the screen and she was able to start and after the 3rd card ( picture and letter D for Dog) she selected this. She was intrigued with the music that started playing and the colourful images that started to appear and she started to giggle and laugh and asked “ What is this? What is this called?” ( pointing to the iPad) The word DOG appeared in front of her and broke apart prompting her to put if back together and I told her to touch each letter and fill it into the word DOG and she was able to drag the D and did the other 2 letter completing without instruction. This then prompted the game to make a complete sentence with the word DOG in it and she was able to fill in by dragging the letters into the sentence. She read out loud what the entire sentence was and also followed along when the game also, said it out loud. She said “ this is amazing, what is this thing called.”
resident 3: Live butterflies: I asked her to touch the butterfly that was flashing to start the game and she pushed the symbol and the game started, butterflies were flying around and she responded by saying “ oh my”. I told her to hold her finger on the screen and she did and the butterflies started landing on her finger and she said “I can’t believe this” she noticed that there were different sizes and colours on the butterflies and without any further instruction from me she continued to press her finger on
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“The music playing was very memorizing and calming and she continued to keep her fingers on the screen and watch the different colours and images.”
Ifish pond: When the screen came up it was an image of a pond with soft music playing and a few fish swimming in the water. I told her this was an aquarium and for her to move her fingers around and see what would happen. The water looked very real and she was very hesitant to put her finger into the water at the beginning but when I did it first she then tapped very slowly at first. She commented that “ this is amazing “ and started to laugh and then started to run her finger over the screen causing the water to ripple. I then moved a bar down and told her to touch whatever she wanted to put in the pond and she reluctantly touched the frog. It jumped into the water and she commented” oh my” and laughed and then pushed it again making more and more frogs jump into
the pond. She started tapping the other features ( lily pad a hummingbirds dragonflies ) until the water was completely filled and busy. She just shook her head and said “ I can’t believe it” “ that was incredible” . I switched the screen back to just the peaceful pond with a few fish and she just watched and kept saying “ I can’t believe this” Ginger: This is a cute little cat that you can shower and dry and groom and feed and it will,talk back to you. When the cat appeared I told her to touch the shower symbol and she did and she laughed at the cat getting soaked. I told her to touch the symbol for the dryer and she did and laughed when the cat got dried off. I told her to say hi to the cat and tell it your name She said” Hello. How do you do?” The cat repeated what she said and she smiled and said “ my name is __” and when it repeated that she shook her head and smiled. Ocean puzzles and colors: When the game starts there are 20 different ocean animals to choose from and I told her to pick one that she liked and to tap it). She tapped a crab and on the next screen a crab appeared and broke up into 5 pieces to make it a puzzle to form back into a crab). I told her it was a puzzle to put together and she asked where the pieces were and I had to show her where they were. She put her finger on a piece and dragged it into the image until it fit into place. She was able to do the puzzle with no instruction from me and when that was completed another screen came up where she could now colour the crab. The colours were on the right side ( which I showed her with my finger) and told her to colour the crab. She tapped the colour she wanted but didn’t know what to do next. I told her she could begin to colour with her fingers and she hesitated but as soon as she touched it she could see that colour was forming on the crab. She stopped and looked at her finger and coloured some more and looked at her finger again. She said” I can’t believe this, I don’t have anything on my finger” she knew to tap the colour pad again to change the
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“She put her finger on a piece and dragged it into the image until it fit into place. She was able to do the puzzle with no instruction.”
colour and she continued with no further instruction for me to colour the crab. She became more confident as the crab became more colourful. She sat back and started to look and sound overwhelmed. Magic fingers: This was by far the most entertaining and captivating of all the apps. A bar appears at the top of the screen with different colours and images) the screen starts off black and beautiful memorizing music starts playing. I asked her to select an image from the top and she tapped it on and then I told her to move her finger onto the screen to see what would happen. She moved her finger slowly onto the screen which caused tiny stars to come out of the tip of her fingers. She said “ Gracious mother of days” and she continued holding her finger on the screen which caused the stars to get bigger and fill the screen up with all different colours. I told her to pick another image which she remembered to touch the box at the top of the screen. She picked an image that caused little white tornadoes to appear and she placed all 5 fingers on the screen and she created 5 tornadoes to surround each finger. She stopped and said “there is nothing on my fingers” and looked at them to make sure. She went through almost all the different colours and images and on her own she swiped her fingers, tapped her fingers, touched with her hand prints. After this app she was exhausted and just kept shaking her head in wonder. She kept saying “ that was amazing”.
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3.2
Dialogue & Co-Creation
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co-creation and dialogue session were set in late January, with staff and families at Czorny Alzheimerâ&#x20AC;&#x2122;s Centre. This ses-
sion included ten staff members from various roles inside the facility
including caregivers, registered nurses, music therapists and social workers; and six families whose loved ones had been admitted to Czorny full time. 37
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Visiting Czorny Alzheimer’s Centre again to speak with families and staff was a really amazing experience. Being welcomed by Dorrie Ferster and her team, I was set up in a room where I lay out materials for the co-creation session and dialogue. Because Alzheimer’s facilities are always moving and unpredictable, staff filtered into my session as they could. In the end I was able to get participation from ten staff members. Staff were curious about the idea of Together, where many ended up staying longer than they had to, in order to ask questions and give suggestions. An hour later, families showed up to participate in the session. Six family members were present during the co-creation session. Although the session went well, the dialogue afterwards is where a lot of the most helpful insights came fourth.
ACTIVIT Y 2 There are a lot of important factors that make up a successful activity for a resident. Rate the categories provided based on their contribution of making an activity successful by circling them on a scale of not important to important.
Interaction
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ACTIVIT Y 1 Part 1: Inside the two squares, please draw or describe activities that you believe are most successful for residents in the mild stages of Alzheimer’s.
staff Part 2:
Staff were asked to fill out various questions using both words and images that asked their opinions on the subject of engagement with residents. Their answers gave me insight into some of the most effective methods of engagement, what was important to residents, and the various details that make activities more successful.
Inside the next two squares, please draw or describe activities that that you believe are most successful for residents in the earlier stages of Alzheimer’s.
families
Families were also engaged with similar questions, however theirs were focused more on the personal difficulties they had when visiting their loved ones. Their answers gave me insight into the wants and needs of families, what they believed would make visits more successful and the various stories and ideas around creating an app for engagement.
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system development Initial Design Development page 43
Final System Design page 69
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4.0
Initial Design Development
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hen i started this project I was imagining that the solution would and could only be something both physical and
tactile. I thought anything digital based would be inappropriate with this demographic in mind. Until Czorny staff mentioned to me that a common trait of a resident watching TV was that they would stand up to touch and swipe the screen; the desire to touch and swipe reminded me of the interactions with an iPad. Suddenly a digital touch solution seemed like it might be worth exploring. By learning further how the iPad had been used throughout other case studies, and by professionals in the space of Alzheimerâ&#x20AC;&#x2122;s care to promote engagement, the idea
was deemed to be a possibility. Early iterations of this concept were drawn out through the fall semester. 43
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Initial mind mapping explored different activities and what was successful about their approach.
physical direction
Initial research showed that a physical solution was the most appropriate route to take for engaging someone with Alzheimer’s Disease. Various ideas were formulated and mapped out that utilized several strategies for engagement such as light therapy, sensory tools, modular game systems, book designs, interior design and puzzle activities. For this initial direction I looked at how a tool could be curated and adapted to resident’s interests. By designing a modular system that could be interchanged on a physical piece of furniture like a table, it would allow staff to tailor activities to varying residents, while also encourages residents to interact with one another. By making the table a centre for interaction, it would create a more social environment for Thinking Digital
Christina Yamagata speaks about the ease of usability of iPads and tablets , In her study, Mobile App Development and Usability Research To Help Dementia and Alzheimer’s Resident’s where she discusses that technology has rarely been employed as a tool to help residents, families and caregivers and argues that the simplicity of the tablet, can be user-friendly to even the most inexperienced. She argues saying that “applications can even be designed to facilitate communication when coherent speech cannot be articulated.” This can be a major issue for people with Alzheimer’s Disease especially since many lose the ability to converse through traditional methods. In fact she argues that technology can help bridge the gap to improve connection saying that as individuals age or begin to suffer from disabilities, the challenges of interaction between those individuals and their families increase, social communications through traditional methods decrease and ultimately this can cause frustration.
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? PLAY THERAPY
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boxes, which are essentially a box full of printed images that stay static. These are usually opened every once and a while but mostly tucked under beds and lost on shelves to never be engaged with until a family shows them. But what these memory boxes and photo boxes do well is help re-live past events, which helps residents become familiar with their surroundings.
Reminiscence Therapy
Reminiscence therapy is one of the main features of the Together system. Reminiscence therapy is a way of thinking back on past events and experiences. It’s a powerful therapeutic approach that often improves mood and brings a person back to a reality they know and more importantly, understand. When living with Alzheimer’s, less and less of one’s current surroundings make sense. With a dissipating short-term memory, feelings such as confusion, mistrust and anxiety are unfortunately all too common. Through reminiscing, a person with dementia can take pleasure in reviewing positive stories and events from days gone by. Use Promenade’s photos, questions and music to enhance your reminiscing experience.
Christina Yamagata speaks about the ease of usability of iPads and tablets , In her study, Mobile App Development and Usability Research To Help Dementia and Alzheimer’s Resident’s where she discusses that technology has rarely been employed as a tool to help residents, families and caregivers and argues that the simplicity of the tablet, can be user-friendly to even the most inexperienced. In fact she argues that technology can help bridge the gap to improve connection saying that as individuals age or begin to suffer from disabilities, the challenges of interaction between those individuals and their families increase, social communications through traditional methods decrease and ultimately this can cause frustration.
play Therapy
Play therapy and game therapy help stimulate cognitive facilities like attention and memory. It uses play to communicate with and help people relieve psychosocial challenges. Play is an integral part of caring for someone with Alzheimer’s Disease, which can result in a more social, emotional and physical well-being.
My objective was to take this concept of reminiscence therapy and combine it with play to create a tool that moved past the typical static photo albums and designed so residents could not only reminisce with familiar photographs and media, but also take advantage of activities to help them become more engaged and stimulate their minds.
utilizing existing therapies
Because Alzheimer’s is most commonly related to memory loss, there is a stigma around the disease that a person with Alzheimer’s is not presently “there,” which means they can not feel or be present. However this could not be farther from the truth. Alzheimer’s Disease and Dementia are not often thought of as a subject for a design problem, however the relevance of interaction design and its ability to help families with engagements can be a new way of thinking about the general care of the disease. Engaging with your loved one after being diagnosed with Alzheimer’s can be a difficult task. In attempt to connect back with their loved ones, common items families bring into care homes are photo albums/or memory
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â&#x20AC;&#x153;Light as Flightâ&#x20AC;? exercise conducted at the end of Fall Term. This helped flush out our problem space, design principles and design direction as we moved into the Spring semester.
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Families upload Personal artifacts
Tailored to different stages + cognitive levels
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App uses artifacts from families
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Initial iterations of combining images with activities. Because residents have different cognitive levels and interests, the activities would be tailored to the residentâ&#x20AC;&#x2122;s capabilities.
initial wireframing and design prototypes
The following pages depict the various iterations that happened throughout the Spring semester. They showcase several directions and design iterations from initial wire frames to further developed prototypes. Areas such as color, interactivity, size, function and typefaces were all addressed and worked on from week to week. The following showcase some of the more abrupt changes in the system that lead up to a more detailed description of the final solution in the next chapter.
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you will find a new way to connect to your loved one while visiting.
Now available on iOS and Android.
Learn more about the benefits of Reminiscent Therapy and brain Stimulating Game therapy
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About us What is Sit With Me? Who we are Projects we love
Help FAQ Trust & Safety Support Terms of Use Privacy Policy
Hello Happening New! Company Blog Twitter Facebook
About us What is Sit With Me? Who we are Projects we love
Help FAQ Trust & Safety Support Terms of Use Privacy Policy
Hello Happening New! Company Blog Twitter Facebook
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4.1
Final System Design
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he final system design includes three platforms, a website, a mobile application and an iPad application. Each part of the
system provides different functions that add to the structure of care. The Together system works to create a robust experience and a support system for families and their loved ones with Alzheimerâ&#x20AC;&#x2122;s Disease. By utilizing feedback given throughout the year, the Together system
gives families a tool to help connect more effectively with their loved ones and to stay more involved in their general care. 69
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together mobile application Togetherâ&#x20AC;&#x2122;s mobile application allows families to upload photographs on the go to existing albums or create new ones.
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The user has the ability to take photos inside the app, or scan-in images from the past.
Users can upload images using third party apps or images from their phone.
Users can add to existing albums or create new albums directly from their phone.
Family can send a message directly to your loved one when away or planning to visit.
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together website Togetherâ&#x20AC;&#x2122;s website gives families access to information around their loved ones and facilitates the bulk of uploads.
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The landing page gives families links to information on Togetherâ&#x20AC;&#x2122;s benefits and other sources of information around Alzheimerâ&#x20AC;&#x2122;s care.
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When families join they would be set up through the care home their loved one was admitted to.
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Once signed in, a dedicated sidebar is present on the home page and gives families information around their loved ones general care. It includes access to selected staff members when they want to inquire about their loved ones well-being or send a message of appreciation or concern, a general RSS feed which can be tailored to display recent Alzheimerâ&#x20AC;&#x2122;s information, and also the general newsletter and calendar from the facility.
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The website gives families the ability to upload photographs directly from their computer, or pull images from third party applications like Flickr, Dropbox and Facebook.
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together ipad application The engagement tool. Here the content uploaded via mobile and website turn into activities families can do when together, or caregivers can engage with when family is away.
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Themes Chosen By You Together takes content uploaded by family and integrates it into the user flow. By displaying images at full bleed, the user is able to navigate through various albums in a fun and engaging way.
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Uploaded albums become a large part of the engagement as these albums turn into themes that represent the content in which the games are made from.
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Bringing memories to life Together combines content uploaded by family and turns it into activities families can do when visiting their loved ones.
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Image and text are combined in this activity to help reassure and reminisce by combining click-able text that relate to images.
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Images and events are paired with suggestions on conversations starters when families want to strike up engaging conversation.
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By combining images with words, this activity allows families and their loved ones to express themselves through poetry.
Text and image are combined to help residents better understand a photographs context. In this activity, families can leave messages or stories to be played out loud when clicked on.
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Combining music and text, karaoke helps visits become more engaging for both residents and families by tapping into favorite songs and lyrics.
Staying connected to loved ones can be attained with the ability to video call inside the app. Users can write messages that are displayed boldly on the screen, and moments can be recorded.
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Access to favorite music during activities
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The ability to capture moments together
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Saving recorded moments into their memory box can be viewed and shared throughout the family. Cherishing moments that live on.
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In the caregivers side of the app, caregivers choose the resident in which they want to engage, and once chosen, have the ability to become more familiar with that individual resident, learn about his/her preferences and also set up activities
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With the limited amount of time caregivers have in a day, they can easily set up an activity that uses the familyâ&#x20AC;&#x2122;s content to engage residents for specific timed cycles where activities would be specifically adapted to fit the residents own cognitive skills levels, difficulty and preferences.
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brand development Brand Identity page 121
Campaign Language page 131
Exhibition Design page 143
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5.0
Brand Identity
B
ecause the majority of engagements occur when residents are sitting down with family or staff, the identity was
originally based on this notion. Come Sit With Me, later becoming Sit With Me was to encourage the idea of connection while engaging with my project. Throughout the development of this project the name no longer held truth as along with the engagement while sitting, I wanted to depict a name that helped symbolize the idea of support-
ing their loved ones both when present and away. The name Together came to fruition as it represented more than just the engagement that occurred between families, it quite literally represented the idea of being together. The name also came to life as the word together could help link the notion that families can work â&#x20AC;&#x2DC;togetherâ&#x20AC;&#x2122; to help make their loved one with Alzheimerâ&#x20AC;&#x2122;s Disease enjoy more meaningful moments. 121
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Visual Precedence
From my initial research I found that there were some aesthetic choices that made residents become more stimulated and engaged with activities. The residents responded well to bright colors, simple graphics and big and bold typography. Therefore, my initial visual precedence followed a similar route.
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together together together together
together together together together
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logo
The name Together came to fruition as it represented more than just the engagement that occured between families, it quite literally represented the idea of being together. The name also came to life as the word together could help link the notion that families can work ‘together’ to help make their loved one with Alzheimer’s Disease enjoy more meaningful moments. The logo gives hint to ‘together’ by physically being closer as if it they were side-by-side.
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Sero Light ABCDEFGHIJKLMNOPQRSTUVWXYZ abcdefghijklmnopqrstuvwxyz 0123456789 #!? Sero Medium ABCDEFGHIJKLMNOPQRSTUVWXYZ abcdefghijklmnopqrstuvwxyz 0123456789 #!?
COLOR
TYPOGRAPHY
Colors can help drive the feeling of any project, however when working with Alzheimerâ&#x20AC;&#x2122;s Disease, colors is an important aspect of the design. Color affects people physically and emotionally and contributes enormously to an inspiring environment. Because aging leads to weakened vision, people with Alzheimerâ&#x20AC;&#x2122;s often have vision problems. It is recommended when designing for residents to use colors in contrast, colors that help stimulate mood and calmness. Colors like peach and apricot, who have a high amount of yellow, and other strong and brighter colors help increase contrast while still evoking calmness. For Together, the strong and friendly blue helps drive important features of the app.
FF Sero was selected by Communication Arts magazine for feature in its 2012 Typography Annual. FF Sero combines the legibility and friendliness of a Humanist sans serif with the striking forms of an American Grotesque. This combination made it a great fit for Together. Its distinct x-height allows for easier legibility amongst people who have difficulties reading at smaller sizes and because of its homogeneous grey scale value every letterform stands out. FF Sero Light and Medium in combination were chosen for contrast and cohesiveness through branding and design.
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5.1
Campaign Language
T
he campaign language displays moments in which together happens and by using text that describes various ways
families spend their time, it tries to communicate the way the iPad and Together app can help frame this. These would work as either post-
ers or take aways in which facilities themselves can pass out to families admitted to their care to learn more about the benefits of Together. 131
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re-live cherish love together
re-live cherish love together
re-live cherish love together
re-live cherish love together
laugh play explore together
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laugh play explore together
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“Gee, that guy is handsome sitting on that camel”
“This song makes me want to get up and dance”
things they say when you’re together
things they say when you’re together
togetherapp.com
togetherapp.com
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enourage, support, connect,
reminisce, share, remember,
The Czorny Alzheimerâ&#x20AC;&#x2122;s Centre
The Czorny Alzheimerâ&#x20AC;&#x2122;s Centre
campaign
Final iterations of the campaign collateral captured moments accompanied with key words that helped shape the idea for each scene. The campaign language described moments that evoked a sense of togetherness, and encouraged the viewer to associate themselves with the situation. The ipad was used as a literal frame, that captured moments of being together.
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cherish, love, connect, The Czorny Alzheimerâ&#x20AC;&#x2122;s Centre
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The Czorny Alzheimerâ&#x20AC;&#x2122;s Centre 140
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Exhibition Design
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he exhibition design was styled to help convey a story about a man diagnosed with Alzheimerâ&#x20AC;&#x2122;s, and how his lifetime of per-
sonal photographs are now elements that can be utilized through the Together app. The blue color was chosen to help define the brand of Together and to convey a sense of friendliness, while the white elements are used to help pull out areas of importance, like the logo. The final design arranges the photos from the wall into the website displayed on the iMac, as if they are moving from tangible into a digital space. The ipad screens printed give the viewer a sense that my project is in fact a digital platform and not a photography project. The body copy describes the problem space, while also giving the reader a quick insight into the main elements of the Together system. 143
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maquette submission
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ongoing design
The design is still in progress, however some elements have been finalized. Since the placement of my exhibition is on a backwall, the blue paint will exist to help grab the attention of viewers. The elements of photography have shifted to be directly above the website (which holds a slideshow of more images) as if the photographs are being directly inserted into the project itself. The ipad screens will be mounted on foamcore to allow them to be more prominent on the wall. As well, the Together logo will be laser cut and painted white to give it presence on the wall.
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most recent design
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appendix Bibliography page 151
Ethics Application page 153
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Bibliography
Cohene, Tira, Ron Baecker, and Elsa Marziali. “Designing Interactive Life Story Multimedia for A Family Affected by Alzheimer’s Diease.” CHI 2-7 (2005): 1300-303. Web. 30 Oct. 2014
Nijhof, N., J. Van Rijn, and JEWC Van Gemert-Pijnen. “The Behavioral Outcomes of A Technology-supported Leisure Activity in People with Dementia.” Technolo gy and Disability 25.4 (2013): 263-73. Web. 30 Oct. 2014.
Yamagata, C.; Kowtko, M.; Coppola, J.F.; Joyce, S., “Mobile app development and usability research to help de mentia and Alzheimer patients,” Systems, Applica tions and Technology Conference (LISAT), 2013 IEEE Long Island , vol., no., pp.1,6, 3-3 May 2013
Mokhtari, M., et al. “New Trends To Support Independence In Persons With Mild Dementia--A Mini-Review.” Gerontology 58.6 (2012): 554-563. Academic Search Premier. Web. 16 Nov. 2014.
Six Views In A Box: Dialogues On Everyday Life With Alzhei mer’s. Copenhagen: Danish Design School, 2011. World’s Untold Stories:Dementia Village. Perf. Dr. Gupta. 2013. Film.
TED’s The Coming Neurological Epidemic. Perf. Biochemist Gregory Petsko. 2013. Film.
Timlin, Gregor, Jiang Ying, and Lisa Johansson. “Better Care Homes.” Designing for Different and Changing Abil ities. Helen Hamlyn Centre. Web. 16 Nov. 2014. <http:// www.bettercarehomes.org/> Britton, Beth. “Improving Dementia Care: Ask Those Who Have Lived with the Illness.” The Guardian 13 Nov. 2012. Web. <http://www.theguardian.com/so cial-care-network/2013/nov/18/improving-demen tia-care-patients-and-families>.
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Shaw, Gina. “Living with dementia: ‘The world has opened up for me.” The Guardian 13 Nov. 2012. Web. http:// www.theguardian.com/dementia-friends/living with-dementia-the-world-has-opened-up-for-me “Seven Stages of Alzheimer’s.” Alzheimer’s Association. Alz heimer’s Association. Web. <http://www.alz.org/alz heimers_disease_stages_of_alzheimers.asp. “Guidelines For Choosing An Activity.” Alzheimer’s Society of British Columbia. Web. <http://www.alzheimerbc. org/getdoc/d1afd5a3-4009-4a92-9aaf-ae9e29115e0b/ Guidelines-for-Choosing-an-Activity.aspx>.
“Http://memoryboxnetwork.org/.” The Memory Box Net work. Web. <http://memoryboxnetwork.org/
National Instute of Health National Institute on Ageing, “Alzheimer’s Disease: Unraveling the Mystery,” Alz heimer’s Disease Education and Referral Center, 2008. http:// www.nia.nih.gov/
L. Hebert, P. Scherr, & L. Beckett, “Age-specific incidence of Alzheimer’s disease in a community population,” The Journal of the American Medical Association, 1995: 273 (1354).
Coppola, Jean F. PhD; Kowtko, Marc A.; Yamagata, Christina; and Joyce, Shannon, “Mobile App Development and Usability Research to Help Dementia and Alzheimer Patients” (2013). Wilson Center for Social Entrepre neurship. Paper 18. http://digitalcommons.pace.edu/ wilson/18
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Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association Volume 10, Issue 4, Supplement, Pages P181–P182, July 2014
Zeisel, John. “I’m Still Here: A New Philosophy of Alzheimer’s Care” Penguin/Avery Books. 2012
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TCPS 2: CORE
Date of Issue:
5 September, 2013
has completed the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans Course on Research Ethics (TCPS 2: CORE)
Kevan D'Agostino
This document certifies that
Certificate of Completion
Navigating the ethics of human research
PANEL ON RESEARCH ETHICS
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Office of Director of Research
EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB)
FORM 205.2 Student Research Ethics Application This application form is used in courses that are approved for participant research. The instructing Faculty Member has completed a Form 205 Course-Based Research Ethics Application and has approval to review and supervise student research. This form can also be used for student research in courses that have not been approved for participant research. In this case, students will complete this form that will be submitted under the supervision of the instructing Faculty Member for review to the Research Ethics mailbox or to ethics@ecuad.ca. If more space is required to answer the questions, attach a document with the long answers labeled to correspond to the questions on the form. (ECU-REB Use Only) ►
File #:
2014091201
Date Received: Reviewers: Casey
Date Reviewed:
Hrynkow
Status/Date: Approved
10/16/2014
SECTION A – GENERAL INFORMATION A1. PROJECT TITLE: A2. PROJECT DATES: (Commencement to Completion)
Come Sit With Me: Making A Connection With Alzheimer's Disease September 7th, 2015 - May 30th, 2015
A3. COURSE NAME & MNEMONIC:
DESN-410/420- 2D Core Design Studio VI
A4. RESEARCHERS: Principal Investigator (Instructing Faculty Member)
Name
Principal Student Researchers
Faculty/Progrm
Phone
Casey Hrynkow
Design + Dynamic Media
6,048,443,800 chrynkow@ecuad.ca
Kevan D'Agostino
Design + Dynamic Media
6,048,364,581
kdagostino@ecuad.ca
Other Student Researchers
6,048,364,581 A5. PARTNERS:
List the organizations or companies that will be involved in this research project. Include any agreements that are available.
Name of Contact Person for Partner Organization -
Partner Organization (name and address) -
Dorrie Ferster Czorny Alzheimer's Centre Dorrie.Ferster@fraserhealth.ca
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SECTION B – SUMMARY OF PROPOSED RESEARCH
B1. RATIONALE Briefly describe the purpose and aims of the proposed research project in non-technical language.
My aim is to increase enjoyment and facilitate a more meaningful connection for residents living with Alzheimerʼs Disease. I am also trying to help address the apprehension that occurs when family members visit, a situation that often leads to confusion, frustration and discouragement for both parties. This unconstructive experience plays a critical role in the day of the residents, and has an impact on residents who often suffer from depression, mood changes and apathy. This tool will help facilitate a more successful social connection between visiting family members and their loved ones affected with Alzheimer's Disease, while also encouraging independence and enjoyment for residents when feeling bored and alone.
B2. METHODOLOGY: Check all that apply and describe sequentially how the various research procedures or methods will be used.
Describe -
Check all that apply ✔ Questionnaire/survey (mail, email/web)
The primary research stage will entail the following:
✔ Questionnaire/survey (in person)
1) Observational field notes observing residents during activities at Czorny Alzheimer's Centre. These notes will help me assess connections that happen between families, residents and staff.
Interview(s) (telephone, skype) ✔ Interview(s) (in person) ✔ Secondary Data
Computer administered tasks Ethnographic documentation ✔
Observational field notes
✔ Oral history
Focus Groups Journals/diaries/personal correspondence ✔
Photo/audio/video recording
Unobtrusive observations Non-invasive physical measurement ✔
Participatory design (probes, co-creation
activities, storytelling) Other
2) Co-creation sessions with staff and family. I will design, introduce and pass out activities. The co-creation session will take approximately 1– 2 hours. Activities will be largely centred around collecting information related to engagement around Alzheimer's Disease and thinking about what helps stimulate engagement in residents and between family and staff. These activities may include exercises such as the following: - word/picture associations - material samples - audio/video - generative drawing Tools such as yellow stickers, material, large pieces of color paper, images and pencils are provided to some participants to express, ideate, communicate and think about issues presented by myself in close collaboration with them and with other participants. These tools are essential in engaging the participants in creativity. The materials resulting from the co-creation session will allow myself to consider solutions from multiple perspectives. Co-creation activities will vary depending on group engaging in session. 3) Questionnaire for Families and Staff- A questionnaire will focus on collecting information from the public. This will serve as a general baseline to understand prevailing attitudes towards Alzheimer's Disease and the care for them inside care homes. 4) A series of interviews with key personnel at Czorny and family members, to help establish existing activities inside care home and to help understand new ways for improving connections.
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EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB)
B3.PARTICIPANTS: Indicate the groups that will be targeted in recruitment for participation in the proposed research.
Check all that apply ✔ Undergraduate students of Emily Carr University Graduate students of Emily Carr University Faculty or staff of Emily Carr University ✔
The industry partners’ employees or associates
Patients of a health care organization Students of another educational institution (specify) Members of specific groups or organizations (specify) People who identify as Aboriginal People who do not have full capacity to offer free and informed consent (describe) ✔
Children or adolescents (specify)
✔
Adults
Describe any specific inclusion criteria (affiliations, gender, age ranges, capacity for consent, other) -
Family members of residents and Czorny staff members will be involved. If under the age of 18, parent or guardian will sign for participation. All parties will participate only if they choose to. Research on residents will be collected by only using observational data collection.
Elders Other (specify) What is the expected number of participants?
Describe any exclusion criteria –
5-20 family members, 5-20 staff members
B4. RECRUITMENT & INCENTIVES:
Describe how the participants will be recruited. Attach any materials that might be used for recruitment (eg. Email texts, posters, flyers, advertisements, letters, telephone scripts). Describe the rationale for incentives offered to the participants –
Participants will be recruited by fliers, newsletters and sign up sheets. Staff members and families will participate on a voluntary basis. No coercion will be used in this process. There is no direct solicitation of participation. The family may also be surveyed through an online survey platform that only stores data in Canada and is in accordance with the Tri-Council's policy on data storage.
B5. SETTINGS OF RESEARCH:
Specify the exact locations -
Check all that apply -
Czorny Alzheimer's Centre
Emily Carr University ✔ Community Site School Hospital Company Other 155
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EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB) B6. FEEDBACK TO PARTICIPANTS:
Describe your plans for providing or offering to share the results of your research with the participants. This might include invitations to final presentations or exhibitions or copies of publications –
The results will also be shared through a final process book. Participants are also invited and encouraged to attend mid term presentation and grad show at end of year.
SECTION C – PROPOSED RISK / BENEFIT RATIO C1. BENEFITS TO PARTICIPANTS:
Describe any known or anticipated direct or indirect benefits that the participants might gain from their participation in the research activities. This description should match the description on the invitations or consent materials –
Individuals will receive no direct benefit for participating. However they will be part of the opportunity to engage and collaborate towards something that will be of positive impact to the residents and family visits. They will benefit with pride of being part of a creative process, facilitating better family visits and overall positive feelings. This project also has the potential to help them better understand Alzheimer's Residents and their daily needs and the needs of their residents to increase engagement. C2. BENEFITS TO SOCIETY:
Describe any known or anticipated direct or indirect benefits to the research community or society from the proposed research. This description should match the description on the invitations or consent materials –
It is hoped that the proposed concepts may influence the development of a more enjoyable experience for all parties: family members, staff and residents.
C3. RISKS: Indicate any risks that are likely to happen to the participants as a result of the research. Describe if the risks identified are greater or less than the risks that the participants might encounter in similar activities in their everyday lives.
Describe –
Check any that apply Physical risks ✔
Psychological or emotional risks
Social risks (including privacy issues, economic position, status, relations with others)
✔
The research involves an element of deception (describe in detail) The research involves the disclosure of information that is intimate or sensitive in nature Other (describe)
Participants may experience, worry, anxiety, emotional stress and loss of privacy may be encountered as the residents, the staff and families interact with activities designed by myself. (Given the nature of their interactions on a day to day basis this will not be in excess of normal day-to-day interactions. )
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Office of Director of Research
EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB)
C4. MITIGATING THE RISKS:
Describe how the researchers will mitigate the risks described above. Describe the resources that can be offered to the participants. Are the researchers are skilled and equipped to deal with the identified risks? –
I will receive a brief from Czorny Alzheimer's Staff who are aware of the residents psychological needs. This will help guide myself; staff will step in should any issues arise. A staff member will also be present during all the co-creation workshops. Families and patients will be encouraged to stop at any point if they feel at all uncomfortable and will be made aware that they can stop at any time.
SECTION D – THE CONSENT PROCESS
D1. CONSENT PROCESSES: Indicate and describe the consent materials and processes that will be used. The Template 201.1 Invitation / Consent Form, the Template 201.2 Media Release Form, and the Template 201.3 Online Survey Preamble can be modified to match the needs of the research. If other consent or release forms are used, explain in detail.
Check all that apply -
Describe –
Information letter with a consent form Media release form Combined invitation and consent form
A description of the project and the consent form will be reviewed in person to all parties who are voluntarily involved.
✔ Combined invitation, consent and media release form
Assent processes for those who do not have the capacity to provide free and informed consent. Non-written consent (describe in detail) This research requires an exemption from the consent process (describe in detail)
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EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB) SECTION E – CONFIDENTIALITY & SECURITY
E1. PRIVACY: Indicate the level of confidentiality built into the research design. Describe the rationale for the collection of identifiable research materials (data).
Check all that apply -
Describe -
Directly identifiable – the research materials (data) will identify specific participants through direct identifiers like name, phone number, address, social services numbers. (Describe) Indirectly identifiable - the research materials (data) can reasonably be expected to identify specific participants through a combination of indirect identifiers like place of residence and date of birth. (Describe) Coded – direct identifiers are removed from the research materials (data) and replaced by a code. There exists a possibility that with access to the code, it may be possible to re-identify the participant.
Participants names will be collected initially with the signed form of consent. These will be filed in a secure file in the Principal investigator's office. A code such as "Participant 1" will be applied to each participant for reference in discussions, reports, etc. but not cross-referenced with the forms. These will not be retained.
✔ Anonymized – the research materials (data) are irrevocably stripped of direct identifiers. There is no way to link a code to the data in the future.
Anonymous – the research materials (data) never has identifiers associated with it (for example, anonymous surveys) and the risk of identification is very low. E2. STORAGE AND HANDLING DURING RESEARCH:
If identifiable research materials (data) will be collected, describe in detail how these materials will be stored and handled during the course of research –
Locked in the REB office.
E3. STORAGE AND ACCESS AFTER THE CONCLUSION OF RESEARCH:
Research data and confidential materials will be submitted to the instructing Faculty Member at the conclusion of the project, for secure storage at Emily Carr University. If the researchers require that the data or confidential materials be stored or shared outside of the university following the conclusion of the research, describe these plans in detail –
data not stored or shared outside the university.
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E4. WITHDRAWAL:
Describe if there are any restrictions to the participants’ right to fully withdraw their participation and data during the course or after the conclusion of the research activities –
All parties involved can withdraw from the research at the time. However, as data is anonymous and not personalized, participants will not be able to withdrawal their data from the research after the research has been collected, as it is not personalized. Participants will be made aware that their data is completely anonymous.
INSTRUCTIONS FOR ALL APPLICANTS (Students and Instructing Faculty Members) – If the student participant research extends into a subsequent course, the student is required to maintain the confidential materials generated from the research in the first course during the transition to the second course. Confidential materials must be securely stored in a locked location on the university premises. In the second course, the student is required to re-submit their approved research ethics application to the new instructing Faculty Member. The new instructing Faculty Member must ensure that the new course has ECU-REB approval before the participant research activities can resume. Serious adverse events (unanticipated negative consequences or results affecting participants) of research must be reported to the ECU-REB ethics@ecuad.ca as soon as possible.
INSTRUCTIONS FOR THE INSTRUCTING FACULTY MEMBER – Your approval to review student participant research activities extends only to research activities that pose no more than minimal risk to the participants. The check marks () in this form indicate areas where the risks to the participants might exceed minimal risk. Instructing Faculty Members are advised to review these sections with care. If the proposed activities exceed these parameters of minimal risk, they can ask the student to revise their proposed research to ensure that the research does not exceed minimal risk, or they can involve the ECU-REB in a review of the proposed activities that exceed minimal risk. When a number or all student applications in a course reflect similar risks (for example, they all involve external partnerships or they all involve off-site research locations), the instructing Faculty Member is invited to list the details of the potential risks and the mitigation strategies in a descriptive document, or to submit a student application that serves as a template for all of the similar applications. Mid-semester ECU-REB review meetings have been booked to review research projects that are identified after the start of fall and spring semesters. Note the dates and deadlines here - http://www.ecuad.ca/research/reb/when Instructing Faculty Members are invited to request additional input from the ECU-REB in reviewing student applications at any time. First time instructors of participant research are expected to attend the ECU-REB Information Session and Application Clinic prior to making their first application. In-class workshops on research ethics are available on request – ethics@ecuad.ca .
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EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB) INSTRUCTIONS FOR THE INSTRUCTING FACULTY MEMBER (continued) – The following list describes the parameters of risks currently identified by the ECU-REB as less than minimal risk. These are meant to be guidelines to assist your review of the proposed student research activities. For clarification and assistance, contact ethics@ecuad.ca . Section A4. Partners Section B1. Rational AIM OF RESEARCH - The sole aim for the research activities is pedagogical in nature. In other words, there are no additional expectations from external partners or from independent researchers. Section A4. Partners Section B1. Rationale Section D1. Consent Section B3. Participants
Section B3. Participants Section D1. Consent Section B5. Settings of Research
Section A4. Partners Section B1. Rationale Section C3. Risks Section C3. Risks
DISCLOSURE - There is full disclosure to the participants of the research the aims and expectations of the researchers. This includes the aims and expectations of partners. There is no deception involved. (For example, participants are not unexpectedly recorded without their awareness and prior consent.) VULNERABLE GROUPS - The research does not directly target or have an impact upon vulnerable or isolated groups or communities. (For example, First Nations communities, religious groups, or those for whom the research poses legal or economic consequences.) CAPACITY FOR CONSENT - The participants are capable of giving full and informed consent. In other words, they are adults of full capacity. RESEARCH SETTINGS - The research takes place on the premises of Emily Carr University. No other REBs need to review this research. THERAPEUTIC INTERVENTIONS - The research does not involve therapeutic interventions.
MINIMAL RISK - The probability and magnitude of possible harms (physical, psychological/emotional, social) to the participants during the proposed research activities is no greater than those encountered by the participants during the activities of their everyday life that relate to the research.
DECLARATION FOR ALL APPLICANTS I will ensure that all participant research activities that are administered in this course will meet these Emily Carr University standards and any other legislation or professional codes of conduct that may apply. I have read the Emily Carr University Policy and Procedures 5.1 – 5. 2.1. I have completed the TCPS2: CORE (Course on Research Ethics). I will inform the instructing Faculty Member of changes to participant research or any incidents relating to the participant research covered by this application in a timely manner. At the completion of the course-based participant research, I will submit the following documents to the ECU-REB office for secure storage: Signed FORM 205.4 Completion of Student Research; TCPS2:CORE certificates from the researchers; All of the signed consent forms and release forms; Any data that requires 5-year storage (or a statement indicating its secure location at the university); Any other pertinent documents or descriptions of changes to the original application, including any occurrences of adverse effects. Signature (Student Applicant)
Date
Signature (Faculty Member)
Date
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EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB)
FOR INSTRUCTING FACULTY MEMBER USE (Optional) Date Application Received:
Date(s) Reviewed:
Revisions Required:
Approval Date: Faculty Member Signature:
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FHREB 2014-114
Fraser Health Research Ethics Board
FHA, Evaluation and Research Services #400, 13450 102nd Avenue, Surrey, BC V3T 0H1 Phone: 604.587.4436 Fax: 604.930.5425
CERTIFICATE OF FHREB APPROVALS Official Notification - FHREB Number (to be used on all future correspondence): FHREB 2014-114 Principal Investigator: AITKEN, Jonathan
Hospital/Facility & Department: Emily Carr University/Health Design Lab Institution(s) or Geographical Areas where research will be carried out: Czorny Alzheimer Centre Co-Investigator(s): Kevan D’Agostino, Dorrie Ferster Funding Agencies and/or Corporate Sponsor: unfunded Title: Come Sit with Me: Making a Connection with Alzheimer’s Disease Documents Included in this Approval
Date of Approval
Date of Expiry
•
2014 December 04
2015 December 04
• • •
Emily Carr Application for Initial Review, dated October 19, 2014 Protocol, undated, version 2 Family Consent Form, Version 4, 2014 November 28 Staff Consent Form, November 13, Version 4, 2014 November 28
Type of Approval Initial Approval; Delegated Review
Approval of the FHREB
Steph en Pearc e
Digitally signed by Stephen Pearce DN: cn=Stephen Pearce, o, ou, email=stephen. pearce@fraserhealt h.ca, c=CA Reason: Approval for this application Date: 2014.12.04 16:45:46 -08'00'
CERTIFICATION: With respect to clinical trials: 1. The membership of the Fraser Health Research Ethics Board complies with the membership requirements for research ethics boards as defined in Part C Division 5 of the Food and Drug Regulations and the Tri-Council Policy Statement. 2. The Fraser Health Research Ethics Board carries out its functions in a manner consistent with Good Clinical Practices. 3. The Fraser Health Research Ethics Board has reviewed and approved the clinical trial protocol and the informed consent form for the trial which is to be conducted by a qualified investigator named at the specified clinical trial site. This approval of the documentation listed above and the views of the Fraser Health Research Ethics Board have been documented in writing. With respect to delegated review: A co-chair of the FHREB has reviewed and approved the documentation listed above for the forenamed research study in accordance with the FHREB Policy on “Ethical Conduct of Research and Other Studies Involving Human Subject”, the Tricouncil Policy Statement: Ethical Conduct for Research Involving Human”, and the “International Conference on Harmonisation Guidance E6: Good Clinical Practice E6: Consolidated Guidelines”. With respect to full board review: Full FHREB review and approval of the documentation listed above was completed for non-expedited review in accordance with the FHREB Policy on “Ethical Conduct of Research and Other Studies Involving Human Subjects”, the Tri-council Policy Statement: Ethical Conduct for Research Involving Human” and the “International Conference on Harmonisation Guidance E6: Good Clinical Practice E6: Consolidated Guidelines”. The FHREB approval for this study expires ONE year from the approval date of this certificate. Researchers must submit a Request for Annual Renewal for ongoing research studies prior to the expiry date in order to receive annual re-approval.
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LETTER OF AUTHORIZATION TO CONDUCT RESEARCH
Date: 2014 December 04 Address: Emily Carr University, 1399 Johnston Street
PI Name: AITKEN, Jonathan
City/Province: Vancouver, BC
Postal Code: V6H 3R9
FHREB File #: 2013-109
Study Protocol #:
Study Title: Come Sit with Me: Making a Connection with Alzheimer’s Disease
The following required applicable approvals have been received and are in order: FH REB Certificate of Initial Approval Consents Required and approved: Family, and Staff Dated: 2014 December 04 Versions 4 dated 2014 November 28 The signed signature page of the consent form Consent not required for a specific study must be submitted to Health Reason: Consent Waived Reason:
Records/Health and Business Analytics for the release of any of that subject’s personal information.
Department Agreement for Providing Research-related Services Authorization Services (DAR Form) Not Applicable Privacy Impact Assessment (PIA) Not Applicable Health Canada Letter of No Objection TCPS Certificate Not Applicable Registered at: Clinical Trial Registration No. www.ClinicalTrials.gov Not Applicable www.Controlled-trials.com Cost-Centre Required Funding: Grant/grant-in aid award to Fraser Health Cost-Centre Not Required Unfunded Grant awarded by Fraser Health Industry: REB fee received Grant funds transferred to Fraser Health by Grant-in-aid academic sponsor Grant awarded to non-Fraser Health Institution External grant fund reimburses Fraser Health Agreements: Executed Clinical Trial Agreement for Industry Sponsored Trials Affiliated Researchers: Executed “Research Collaboration Agreement” dated: October 15, 2013 Executed “Sub-Agreement” dated: Research Grant Contribution Agreement dated: Name of Granting Agency: This letter authorizes the principal investigator to begin research-related procedures in compliance with all FH research-related policies at http://fhpulse/policies_guidelines/org_policies/pages/default.aspx. Please note that the ethical approval for this study must be renewed before the one year expiry date of the certificate of initial approval if the study will be ongoing at that time. Digitally signed by Stephen Pearce Authorized by: DN: cn=Stephen Pearce, o, ou, Susan Chunick email=stephen.pearce@fraserhealth. Director, FH Evaluation and Research Services ca, c=CA
Stephen Pearce
Reason: Approval for this application Date: 2014.12.04 16:52:49 -08'00'
Fraser Health Authority Medicine Evaluation and Research Services http://research.fraserhealth.ca/
400 – 13450 102nd Avenue Surrey, BC V3T 0H1 163
Tel (604) 587-4436 Fax (604) 930-5425
Invitation / Consent Form (Families) Date: November 29, 2014 Project Title: Come Sit With Me: Making a Connection With Alzheimer’s Disease Principal Investigators: Kevan D’Agostino Emily Carr University of Art and Design kdagostino@ecuad.ca 6048364581 INTRODUCTION You are invited to participate in a research study. This research aims to develop an effective tool that will help facilitate a more successful social connection between visiting family members and their loved ones affected with AD.The information gathered will be compiled with other information of a similar nature and potentially shown and shared within the Emily Carr and Czorny Alzheimer’s Centre, communities, and the public. You are being asked to participate because family members are a critical part of a resident’s life; they are also invaluable because of the insight they have on the physical and mental well-being of their loved ones. YOUR PARTICIPATION IS VOLUNTARY Your participation is entirely voluntary, so it is up to you to decide whether or not to take part in this study. Before you decide, it is important for you to understand what the research involves. This consent form will tell you about the study, why the research is being done, what will happen to you during the study and the possible benefits, risks and discomforts. The researchers aim to provide information for you about what to expect at all Permission to adapt form granted by OCAD University’s Research Ethics Office. Additional wording is borrowed from the UBC C&W REB ASSENT FORM TEMPATE (version March 22 2010), http://www.cfri.ca/reb/templates.asp , accessed January 9, 2012.
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Invitation / Consent Form (Staff) Date: November 10, 2014 Project Title: Come Sit With Me: Making a Connection With Alzheimer’s Disease Principal Investigators: Kevan D’Agostino Emily Carr University of Art and Design kdagostino@ecuad.ca 6048364581 INTRODUCTION You are invited to participate in a research study. This research aims to develop an effective tool that will help facilitate a more successful social connection between visiting family members and their loved ones affected with AD.The information gathered will be compiled with other information of a similar nature and potentially shown and shared within the Emily Carr and Czorny Alzheimer’s Centre, communities, and the public. You are being asked to participate because you are considered an expert in Alzheimer’s care and you are a critical part of a resident’s life. You can provide valuable insight about the physical and mental well being of residents along with safe practices and recommended actions. YOUR PARTICIPATION IS VOLUNTARY Your participation is entirely voluntary, so it is up to you to decide whether or not to take part in this study. Before you decide, it is important for you to understand what the research involves. This consent form will tell you about the study, why the research is being done, what will happen to you during the study and the possible benefits, risks and discomforts. The researchers aim to provide information for you about what to expect at all Permission to adapt form granted by OCAD University’s Research Ethics Office. Additional wording is borrowed from the UBC C&W REB ASSENT FORM TEMPATE (version March 22 2010), http://www.cfri.ca/reb/templates.asp , accessed January 9, 2012.
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4.2 Schedule
Week 1 Sept 4th
Week 2 Sept 11th
Secondary Research on theme of topic Chosen direction/theme and work on project proposal and REB materials Prepare interview & co-creation materials for primary research Implement primary research materials Analyse findings from both primary and secondary research Begin design development and early prototype iterations Further development of prototype Test prototype with participants Refine prototype Testable prototype and final presentations
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Week 3 Sept 18th
Week 4 Sept 25th
Week 5 Oct 2nd
Week 7 Oct 9th
Week 8 Oct 16th
Week 9 Oct 23rd
Week 10 Oct 30th
Week 11 Nov 6th
Week 12 Nov 13th
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Week 13 Nov 20th
Week 14 Nov 27th
Week 15 Dec 4th
Week 16 Dec 11th