This multidisciplinary project (occupational therapy, psychology, elder law and labour law, social and political science, and engineering) will provide new insights into what happens when people develop mild cognitive impairment or early stage dementia while still working, how this is influenced by legislation, and how it is experienced and potentially managed by those concerned. Start date for this three year project is 1 April 2018.
- - The role of technology, the match between persons and technologies, testing new/adapted solutions to support continued work and/or transition from work, and the learning approaches and problem-solving strategies each person develops for adapting and managing working with cognitive impairment;
- - How laws, regulations and policies in different countries and organizations can support and/or hinder continued work and/or transition from work, how these are practiced by a variety of actors, and how they can be understood better by people with dementia/MCI and their employers;
- - The creation of a new digital tool to support understanding, communication, and planning between people with MCI and their employers.
In Canada: Dr. Jennifer Boger, Karan Shastri, Sheida Marashi (University of Waterloo) and Dr. Arlene Astell, Dr. Parminder Flora (Ontario Shores Centre for Mental Health Sciences, University of Toronto)
In Sweden: Dr. Louise Nygard, Dr. Charlotta Ryd (Karolinska Institute)
In Finland: Dr. Anna Maki-Petaja-Leinonen, Mervi Issakainen (University of Eastern Finland)
Project Progress and Phases
People involved: Karan Shastri, Dr. Jennifer Boger
Timeline ~ 3 months
This project is part of my Masters thesis at UW. As part of my research and thesis, I am expected to do a literature background review, and understand what's already done by researchers in the field. My review process ranged from reading scientific papers from biomedicial engineering and occupational therapy journals to talking with dementia societies, locally.
After doing a thorough domain review and getting familiar with the project space, the next steps for me were to decide what my thesis and research focus will be on this long-term project. While doing my literature research on the domaiain, I realized that while there is a lot of research being done on dementia and user-centered technology, there is not a lot of focus on early-onset dementia. Early-onset dementia is when people develop symptoms of dementia before the age of sixty-five. The number of documented studies examining designing technology for people with early or young-onset dementia (YOD) is less.
The project focus at our end in Waterloo was designing a digital tool that would better assist employees living with YOD and their employers to identify specific challenge points and changing roles associated with these challenge points. We brainstormed and decided on carrying out the design of the tool in three phases: a) Deploying focus groups to understand people with YOD and their experience at the workplace; b) Deploying participatory workshops with people with YOD to eclicit design and tech preferences; and c) Prototyping the tool. My role and task was to do user research and managing all aspects of UX, all the way from ideation - to prototyping.Ethics
People involved: Karan Shastri, Dr. Jennifer Boger, Dr. Parminder Flora
Timeline - 3 months
It is pivotal for me and the team to make sure that the study follows an ethics protocol. This is done to ensure the safety of the participants througout the research and makes the process of raw data - all the way from collection to storage more streamlined. To make sure the study followed an ethics protocol, we submitted an ethics application which was cleared by both - the research ethics boards at the University of Waterloo and Ontario Shores.Scoping - User Research
People involved: Entire team
Timeline ~ 2 months
The problem space was better understood by interviewing the end-users, i.e. people with mild cognitive impairment or young-onset dementia, following ethics clearance. The recruitment involved posters, advertisements and reaching out to local dementia associations.
The interviews were semi-structured and involved either one-on-one or a focus group setting, depending on participant preference. I co-lead all interviews and better understood what we were dealing with. The sessions were audio and video recorded, transcribed and two analysis' methods were performed to observe themes and barriers at work.