Process Book Come Sit With Me: Making a Connection With Alzheimer’s Disease
Kevan D’Agostino Instructor: Casey Hrynkow Course: 2D Core Design Studio IV (Fall Semester)
Process Book Come Sit With Me: Making a Connection With Alzheimer’s Disease
Kevan D’Agostino Instructor: Casey Hrynkow Course: 2D Core Design Studio IV (First Semester)
table of contents 1
Design Proposal 1.0
Executive Summary
1.1
Design Problem/Opportunity
1.2 Goal/Objective
7
21
1.3
Thesis Statement
1.4
Collaboration or Partnerships
Secondary Research 2.0
Literature Review
2.1
Precedence Review
Primary Research 3.0 Observations 3.1
User Testing
3.2 Questionairre/Interviews
41
Early Design Process 4.0
Weekly Summaries
4.1
Light as Flight
4.2 Schedule
59
75
mockups for fall/Next Stages 5.0
Thinking Digital
5.1
Reminiscence Therapy
5.2
Early Prototyping
Appendix 6.0 Bibliography 6.1
Ethics Proposals
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design proposal 1.0 Executive Summary 1.1 Design Problem/Opportunity 1.2 Goal/Objective 1.3 Thesis Statement 1.4 Collaboration or Partnerships
1
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1.0 Executive Summary The idea for my project stemmed from my mother, a caregiver at Czorny Alzheimer’s Centre in Surrey BC. She observed Alzheimer’s residents while she engaged in activities with them and realized that there was a disconnection between what activities they actually engaged with and what was inside hospitals and care homes. Furthermore, she noticed that when individuals began to suffer from Alzheimer’s Disease, the challenges between those individuals and their families increased. This resulted in family visits being more difficult, which caused apprehension. Technology has rarely been employed as a tool to help residents, families and caregivers. My project proposes that interaction design can help bridge the gap between residents, family and staff to help improve the quality of connection between them.
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FAMILY
RESIDENTS
STAFF
FAMILY
RESIDENTS
STAFF
EFFECTIVE CONNECTION
1.1 Design Problem/Opportunity A lack of engagement plays a critical role in the day of an Alzheimer’s resident who often suffer from depression, loneliness and boredom. Current tools meant to bring joy and engagement to residents living with AD are not effective; these physical tools are mostly childish, unengaging and do not adapt well to different stages of the Disease. In the same respect,when family members visit residents who are affected by AD, they are apprehensive to engage with them, which means a lot of the time no engagement actually happens. Instead, a lot of the time, both parties come out confused, frustrated and discouraged. 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.
1.2 Goal/Objective I am trying to improve the connection between family, residents and staff by facilitating a more successful form of engagement. The idea is to create a tool that is enjoyed by family and residents and for use when visiting loved ones with Alzheimer’s Disease.
1.3 Thesis Statement How might interaction design help improve the connection between family, residents and staff to facilitate a more successful form of engagement?
1.4 Collaboration or Partnerships This project is in collaboration with Czorny Alzheimer’s Centre, a facility that is affiliated with Fraser Health. Their facility is the base for primary research. Both BC and Canada’s Alzheimer’s Societies will also be approached for further collaboration.
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secondary research 2.0 Literature Review 2.1 Precedence Review
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“What effect does it have on the relation between a person with Alzheimer’s Disease and his/her relatives when they are cut off from a shared past?”
2.0 Literature Review 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 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.
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. 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 over the last 15 years and has developed and tested non pharmacological approaches to
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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.”
living with the diagnosis that incorporate art, music, environment, love, caring, and touch to stimulate the memories which remain and which do not diminish with time. The book makes a strong case for a “glass half full” or more 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. We just need to understand how to find, acknowledge and support their expression. Three environments are proposed – social, physical and pharmacological – to address 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 replete with specific suggestions of how to build a new relationship, and how to communicate, which, if followed, allows the care giving partners to reach the inner self of both the patient and caregiver. 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 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.
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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, 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
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“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.”
by the furnishing, decoration, and art in each home create an experience reminiscent of each individual’s formative years.
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.
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’s. 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
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“Technology can help bridge the gap between patients and staff to improve the quality of life for the cognitively impaired.”
need in geriatric facilities for stimulating dementia patients, as well providing hard-core data for proving increased cognitive abilities with technology.” 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.
the behavioral 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.
designing interactive life story multimedia for a family affected by alzheimer’s disease.
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“Technology has rarely been employed as a tool to help Alzheimer’s patients and caregivers [...] However, the simplicity of the tablet, as well as its accessibility through its touchscreen function can be user-friendly to even the most inexperienced.”
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 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.
Loneliness twice as unhealthy as obesity for older people, study finds 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
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three-quarters suffered more at night.
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 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.
Alzheimer’s Association: Activities With Your Loved One 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.
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2.1 Precedence Review 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.
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
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“Reminiscence helps those with dementia know that they are not being left behind. The importance of feeling that they are still part of the world and contributing to the life of their family and friends cannot be underestimated.�
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.
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.
ipad engage 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.
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primary research 3.0 Observations 3.1 User Testing 3.2 Questionairres/Interviews
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3.0 Observations What was found through observation is that current activities can be inappropriate, un-engaging, and even offensive to the resident’s intellect. This resulted in an unconstructive experience that leads to frustration in most cases. 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 unengaging 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. Where staff would have to intervene and/or be directly involved for the success of a connection.
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“She picks up the sensory stuff and finds the textures feel good but wants to know what it’s for and what she should do with it.”
brief profiles of residents + engaging with and without activities for 5 minutes (observational) Resident 1: Lady in moderate stage of Alzheimer’s, normally very pleasant and speaks and answers and responds frequently. Mobile Social - 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. 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 Resident 2: 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 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. 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.
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“Walking around cottage looking for something to do, getting discouraged with other residents who are moving furniture and paces back and fourth trying to find someone to carry on a conversation with her.�
Resident 3: 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. 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. 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.
Scenarios of family visiting (observations)
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“Daughter comes in to visit her mom but because her mom is not vocal, she doesn’t have any type of conversation to make a connection. She always sits at the table with her but doesn’t know what to do. ”
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. 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. 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. 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. 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 6. Husband will turn on his wife’s favourite CD and sit on the couch and listen to music together.
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“Daughter and son come in to see mom very little and when they do they are very awkward and do not know what to say or do. They stay for maybe 5 minutes
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 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 9. Companion comes to visit lady and she takes her outside of cottages to walk to give her new surroundings. The campanion will come and sit to watch a musicalDVD with her as well.
and are gone.�
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3.1 User Testing Four participants were able to engage 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 look at. The residents engaged with activities such as word matching, puzzles, drawing, fill in the blanks and speech. The results were astounding. I 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 residents engagement.
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residents interacting with ipad applications 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. Resident 1: live butterflies: I asked him to place his finger on the 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 ? 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. 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 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. 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 his
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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. ginger: I showed him the buttons to make the cat have a shower or dry the cat or brush it’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 “ 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. 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 showed
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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�
her what would happen if she placed her finger on the screen and she watched intently while the butterfly’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. fingerpainting: 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. 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 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. 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.
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“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.�
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 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 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
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“She was asked to touch each letter and fill it into the word dog. She was able to drag the d and the other two letters 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 then read out loud what the entire sentence was.”
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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 tornados 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. 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 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 shaked 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
“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.”
arrow without further instructions 3 more times before stopping. Her comment was that this was very strange. 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.” 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 ( lilypad a hum-
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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.”
mingbirds 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 colour and she continued with no further
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“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.”
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 Questionairres/Interviews Staff Questionnaires/interviews 1. Could you briefly describe your job at Czorny? 2. Within your cottage, what percentage of residents are capable of engaging in activities independently? What activities do they seem to enjoy? 3. Within your cottage, what percentage of residents are capable of engaging in activities with other residents? What activities do they seem to enjoy doing together? 4. From your own experience, what sort of activities do you feel improve mood and enjoyment for residents? Please be as expansive as possible. 5. The goal of this project is to help create a more successful connection between visiting family members and their loved ones. Are there any activities that you think would help families engage, that you have not seen available?
family Questionnaires/interviews 6. How would you define a successful visit with your loved one? 7. What activities do you enjoy doing together when you visit? 8. What are your biggest challenges when visiting? 9. The goal of this project is to help create a more successful connection between visiting family members and their loved ones. Are there any activities that you think your loved one would enjoy that you have not seen? 10. Where do you and your family member spend most of your time together? 11. What are the flaws and/or strengths of current activities?
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early design process 4.0 Weekly Summaries 4.1 Light as Flight 4.2 Schedule
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4.0 Weekly Summaries September 8, 2014 How might we create an affective tool that will help promote engagement and stimulation between residents with Alzheimer’s Disease, family, staff and volunteers, while using the same tool to encourage independence and enjoyment for residents when alone? In collaboration with Czorny Alzheimer’s Centre, I am looking to create a tool that helps promote engagement and stimulation between both staff and family members and their loved ones affected by AD when together, while also encouraging independence and enjoyment for residents when bored and alone. This tool would be work as an interactive element that families could build upon and tailor to the interests of their loved ones, while also being simple enough for residents to challenge themselves and interact with when alone. The idea is to create a tool that helps promote engagement and stimulation between both volunteers and family members and their loved ones affected by AD when together, while also encouraging independence and enjoyment for residents when bored and alone. This tool would be work as an interactive element that families could build upon and tailor to the interests of their loved ones, while also being simple enough for residents to challenge themselves and interact with when alone.
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September 18, 2014 Learning about Alzheimer’s Disease is a very time consuming process. With so many articles and new research on the disease, it was tough to see a where design could make an impact. With some initial mind mapping (not knowing where to start) and several hours spent trying to find relevant information, I found a few connections to some precedence where design was not only part of the process it was actually the solution. 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. Their case study can be found here . 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. Amongst the hundreds of articles written, I found a few design solutions that were very applicable to something I hope to see for my final outcome. One was an app created by a team in Ontario called The Promenade App. It uses reminisce theory to help build conversations and questions around past events.
September 26, 2014 More reading, more writing and ethics moves along... slowly. In the Health Design Group this week we focused on mapping out our observations and clustering all the aspects that come out from our “problem.” Obviously this turned into an overwhelming giant cluster of ideas and observations based on readings and writings that got me a bit closer to actually mapping out my ideas. Next steps include getting ethics approved and moving onto the primary research stage of my project, where I hope to gather a bunch of opinions from both
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staff, family and residents towards a better tool that helps facilitate a connection and helps overcome apprehension that occurs between the parties. “I want to look at the engagement of family members with their loved ones affected with AD and try to help address the apprehension that occurs when family members visit—a situation that often leads to confusion, frustration and discouragement for both parties. ”
october 8, 2014 There has been a lot of reading, observing and writing in the month of September - enough to start to understand my problem space a bit better. However there are a lot of factors involved in creating a tool that facilitates a more enjoyable connection for families and residents with AD; a lot of these factors can not be read in books. In order to understand this problem better, we must be empathetic to the users involved, and start to understand what it’s like to be part of their lives. *In comes empathetic mom* My mom is the type of person who goes so far out of her way to help someone, she can’t see her way back. Because her experience working with Alzheimer’s residents is a large part of this project, I lean on her a lot for her knowledge and support. I am learning more and more that this is a real problem, that involves real people and needs a real solution. This week we flushed out some successful mind maps and came up with some great connections that are a great start into our primary research stage. On to the next week.
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october 15, 2014 With Alzheimer’s Disease comes people who have different experiences, interests and cognitive levels. How do we create something that helps facilitate connection for all these minds, without offending them with juvenile solutions or activities that are too challenging? Books, music, art, exercise, food/ drink, are all examples of what exists out there - but really these only exist separate from one another, mostly underutilized due to lack of usability. What if we looked at a common space inside Czorny Alzheimer’s Centre and focused on the social connections that occur there? What if we looked at a table for example - what are all the different things involved? We know that the tables at Czorny fit 4 people, they are mostly square, they can be placed together to be larger and they exist in most common areas. Would a modular system that allows adaption of different activities and skill levels be a solution worthy of exploring? Instead of looking at something new I could introduce, I must look at what is already familiar to residents. Also what I design can not be a hindrance to staff; If they have to help facilitate this connection, it must benefit everyone involved. I started to explore scenarios and areas inside Czorny where families gather. This week I was hoping to get clearance on my ethics, but it seems to be one more week until I get into Czorny to start observing and getting some primary research gathered from staff and families.
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“My loved one is way too intelligent for this, she looks at it and already knows that something isn't right.�
october 23, 2014 With so many variations in care, It has been tough not to jump to conclusions when reading books or case studies, so this week has been all about listening and observing. Even though my ethics has not been approved yet and I have not been able to conduct my interviews and workshops, I have listened to stories from family members who tell me that this problem is all too real. Some of these family members have even hired geriatric therapists to design specific activities for their loved one because what is out there does not work! Conversations with these people so far have come up with these two questions: 1. Why does a tool not exist that allows me to connect with my loved one in a way that is both engaging for me, and more importantly for them. and; 2. Why are tools or activities out there both juvenile and degrading? We have to remember, people with Alzheimer's Disease are no less intelligent, their stories are no less important than yours or mine, and their past is not automatically abandoned once the disease is diagnosed. So why do the tools they are engaging in reflect this? The person is there; they know they are there. It is important that this sort of thinking is integrated into my solution.
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november 2, 2014 My mom is so invested in this project, we speak about it on the phone at least four days a week. Normal conversations about what her residents did that day to talking about the next direction for the project are just some of the things discussed. She is a big part of this project, and is my life line when learning about Alzheimer’s Disease and the people affected by it. From the perspective of someone who works with them almost every day of the week, the information is invaluable. I think when we started this project we were thinking that the solution would and could only be something both physical and tactile. Until I spoke with my mom on a normal day where the AH-HA moment occurred. She mentioned to me that a couple of her residents watching TV kept on standing up to touch the screen; this was something normal to her. They would be asked to sit back down. Five minutes later they were up again. This happened a few more times after that. Finally, one of the ladies turned to my mom and said "I wish I was in there, in that movie." Such a heart-wrenching thing to say. And then it hit me.. Why can't they be in that movie? Why cant they be part of that story? Originally when I started this project - my concept was storytelling. How can people with Alzheimer's and their family be part of a larger story that helps bring them together in a more successful and engaging way? An activity that not only helped them connect, but brought joy to their day. It was tough to think physically because, A) I am not an industrial designer and B) physical objects only had so much capacity and how much work would it be to create different objects for different cognitive levels and interests of people living with AD. A digital solution seems so much more adaptable - so much more full of possibility.
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“How might interaction design help improve the connection between family, residents and staff and facilitate a more successful form of engagement?”
But of course the question, which lingered in my mind from the very beginning, was still there: Can people with Alzheimer's interact with an interactive object? Can they use technology like the iPad or any sort of touch screen or gesture controlled object? Well my friends, I am still on the hunt for this answer, but in some recent discoveries, the possibilities seem very positive. Besides the handful of essays and studies conducted with technology and Alzheimer's, there are projects like iPad engAGE and most notably The Forest Project by The Alzheimer's Society of Australia that show the potential for digital solutions, while also raising awareness for the problem. With inspirations also coming from other places like Vancouver's Loud Crow Interactive's Interactive Storybooks - I am very excited about the upcoming week and all the exploring I can do in this space.
november 21, 2014 “How might interaction design help improve the connection between family, residents and staff and facilitate a more successful form of interaction?” Still vague - but that has now been the question driving my research. Did you read that right.. interaction design? Aren’t you working with people with Alzheimer’s? That will never work. Literally my thoughts from the very beginning. It wasn’t until I started thinking about what I wanted to achieve that I looked to digital solutions - so much is possible with a digital solution, I had to at least look. With the challenges that come with technology and the inexperience most elderly people have with it, I never thought it would be something plausible. We go to a design school, sometimes jumping to an app or website is something we seem to do almost inevitably, but its
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not always appropriate. Alzheimer’s Disease is a heavy subject that involves a lot of people, the last thing I can afford is to be irresponsible in my solution. But holy, once you dive into a bit of research and search for the words Alzheimer’s and digital, it’s exciting to look at all the possibilities. Who knew (we all knew), but ipads are designed so efficiently, they are almost fully intuitive. But AD residents and ipads? really? YES! The amount of research in this space is somewhat limited, but the quality of this research is very promising. I could quote this for days but “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.” - this is where this project comes in! But what can we do? We know two things: 1) Families are apprehensive when visiting, and they find it hard to connect with their loved ones when away 2) Residents are unengaged and need to be stimulated in order to increase happiness which directly relates to their quality of life and helps reduce symptoms of depression, boredom and loneliness. So we decided to test it ourselves. Choosing 9 apps that we thought would be interesting to test(and other really smart people with lots of degrees thought as well) that all had various cognitive and physical skill levels and involved different activities that challenged the user. The results were amazing. Users intuitively knew what to do. They touched the screen once, and that was it. They were hooked and they actually showed it on their face with enjoyment. Ah, so satisfying. I synthesized the research and weighed the different results from each app quickly realizing that each activity depended on three things: It’s visuals (color, age appropriateness), the sound (whether music playing in the background, sounds played when interacting, out loud instructions or rewarding the user) and overall it’s ease of Interaction (size or design of menu bars, visual cues, size of buttons).
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4.1 Light As Flight In the last weeks following up to our presentation, our class was part of an activity called Light As Flight, where we were asked to choose a direction for our solution and run with it. The activity also forced us to flush out our Design Principles and the guiding factors for our project to be successful. For my project to be successful: •
It must facilitate a better connection for family and residents
•
It must increase enjoyment in residents
•
It must be tailored to physical and mental capabilities of people with Alzheimer’s
•
It must be easy and accessible
•
It must make visits more successful for both family and residents
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4.2 Schedule 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 56 | Come Sit With Me
Week 1 Sept 4th
Week 2 Sept 11th
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
Week 13 Nov 20th
Week 14 Nov 27th
Week 15 Dec 4th
Week 16 Dec 11th
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next steps 5.0 Thinking Digital 5.1 Reminiscence Therapy 5.2 Early Prototyping
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5.0 Thinking Digital when I started this project I was thinking 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. I was anti-digital. Until I spoke with my mom who is a caregiver at Czorny Alzheimer’s Centre – and is a major contributor to this project – where the AH-HA moment occurred - She mentioned to me that a couple of her residents watching TV kept on standing up to touch the screen; this was something normal to her. They would be asked to sit back down. Five minutes later they were up again. This happened a few more times after that. The desire to touch and swipe images reminded me of the interactions with an ipad. Suddenly a digital touch solution seemed like it could be a possibility. But of course the question on my mind was, can people with Alzheimer’s engage with something interactive? Can they interact with a touch screen technology like the ipad? Christina Yamagata who speaks about the ease of usability of ipads and tablets , In her study called Mobile App Development and Usability Research To Help Dementia and Alzheimer’s Resident’s 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. Applications can even be designed to facilitate communication when coherent speech cannot be articulated, - which can be a major issue for people with Alzheimer’s 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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REMINISCENCE THERAPY
Old Photographs
INTERACTIVE ACTIVITIES THIS PROJECT
Mind Games
Media
Puzzles
Favourite Songs
Problem Solving
Conversation
Memory
5.1 Reminiscence Therapy Reminiscence therapy is one of the most popular psychosocial interventions in Alzheimer’s care, and is highly rated by staff and participants. Reminiscence therapy is a way of thinking back on past activities, 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. Through reminiscing, a person with Alzheimer’s can take pleasure in reviewing positive stories and events from days gone by. This is a very constructive experience for both parties, because it is shown that residents have a better time remembering items from the past, while families want to cherish the time in the present. So what I planned to do – was to take this concept of reminiscence therapy and apply it to an application that families and residents could engage with together- something that moved past the typical static photo albums and designed so residents could not only reminisce with familiar photographs and audio – but also take advantage of activities to help them become more engaged and stimulate their minds. Because it has been proven that the use of brain, memory and solving problem games can also help stimulate the brain and reduce symptoms– this combined with reminiscent therapy – we could take advantage of both.
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5.2 Early Prototyping Families will be able to upload personal artifacts like photographs, audio, personal messages, favorite music etc to an administrative website – for example they can upload past photographs of trips, pets, weddings etc to the most present of photographs, of the new grandchildren, birthdays etc – these artifacts would then sync to the ipad where they would be filtered into different activities. When using the app – the user would be presented with a very simple menu system that presented two paths for the user - based on whether they were a family member or staff/ resident. The family activities would be tailored to increase connection between the family members and residents and increase the quality of the visit. while when family is away – the Staff/residents activities would be tailored for engagement and individual enjoyment.
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Families upload Personal artifacts
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App uses artifacts from families
RESIDENTS
Activities tailored for residents
FAMILY
Activities tailored for residents with family
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WOULD YOU LIKE T O TA K E A B R E A K ?
YES
NO
Activity Examples This is a very primitive example of what various activities could look like using a photograph uploaded by the family. Because residents have different cognitive levels and interests, the activities would be tailored to the resident’s capabilities. For example – instead of completing a puzzle with 20 pieces – the pieces could be scaled down to 10 or 5 or maybe a puzzle is too difficult and only photographs show up and make sounds.
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Visual Precedence From my 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. Come Sit With Me’s logo must strike the idea of dialogue between two users and must also be friendly.
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Logo Design The dashed lines mimick a space or object for a family to gather around and connect. The dashed lines hint at the idea that the space can be interchanged - whether the space is a table or the object is an ipad. Colors are friendly and approachable and mimick the moods in which the families can feel. The quotation marks and blocks mimick chairs and people connecting through conversation. Lowercase typography gives approachable and friendly feeling.
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appendix 6.0 Bibliography 6.1 Ethics Proposal
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6.0 Bibliography Cohene, Tira, Ron Baecker, and Elsa Marziali. “Designing Interactive Life Story Multimedia for A Family Affected by Alzheimer’s Disease.” 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 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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6.1 Ethics Proposals
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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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- The checked items correspond with INSTRUCTIONS FOR THE INSTRUCTING FACULTY MEMBER regarding the review and
1
Office of Director of Research
EMILY CARR UNIVERSITY RESEARCH ETHICS BOARD (ECU-REB)
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.
Check all that apply ✔ Questionnaire/survey (mail, email/web) ✔ 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 ✔
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Describe The primary research stage will entail the following:
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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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:
Check all that apply Emily Carr University ✔ Community Site School Hospital Company Other
Specify the exact locations -
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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.
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
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Other (describe)
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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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 Information letter with a consent form Media release form Combined invitation and consent form
Describe –
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 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.
Describe -
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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FOR INSTRUCTING FACULTY MEMBER USE (Optional) Date Application Received:
Date(s) Reviewed:
Revisions Required:
Approval Date: Faculty Member Signature:
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