Dementia Lab 2021 / Supporting Ability

Intro

Talks

Please join us in featured talks and discussions from designers working in the field of dementia across the globe. These talks showcase current work and highlight ways in which design and creative methods can uncover, support and amplify the abilities of people living with dementia. These talks will be hosted live on zoom, concluding with interactive question and answer discussions. Access to all of the talks and discussions listed below are part of your general conference ticket. For people who are unable to join us live, recorded talks will be available.

Workshops

We will be hosting a series of live interactive, online workshops through Zoom. We welcome participation from people living with dementia, carers, health care workers, designers and researchers.

Workshop registration is separate from the general conference ticket. Registration is limited to 20 people per workshop and will be filled on a first come-first serve basis. Please register on our tickets page. Each workshop is $10. You may sign up for as many workshops as you’d like. If you're facilitating a workshop you do not need to sign up.

Detailed descriptions for all of our talks, workshops, and events can be found below.

Dementia Lab 2021 schedule, see calendar page for different versions of the schedule

Main Events

2021 Conference Opening

Monday, January 18th 9:30am-10:30am PST

Health Design Lab, Emily Carr University & The Imagination Network

Raising the Curtain on Dementia Lab

Join us in opening the conference with a one-of-a-kind montage of performance, spoken word, dialogue, song, puppetry and more. Created and performed by The Imagination Network: a dynamic group of artists, healthcare professionals, academics and advocates engaging in creative projects with older adults living with dementia aiming to change the way we view and experience aging in our community. See some of their previous work here.

Keynote

Christina Harrington

Thursday, January 21st 9:00am-10:15am PST

Moving Beyond Accessible:
Considering Design’s Reach for Marginalized Aging Populations


Designer and qualitative researcher Christina Harrington focuses on understanding and conceptualizing technology experiences that support health and wellness among older adults and individuals with disabilities. Her research seeks to find ways to employ design as a catalyst for health equity and socially responsible technology experiences. She explores concepts of health through community-based participatory design and co-creation, considering health management as a sociotechnical experience. Through participatory research methods she explores constructs of empowerment and access among vulnerable communities that have been marginalized along multiple dimensions of identity (age, race, ethnicity, income, class). She is an Assistant Professor in the College of Computing and Digital Media at DePaul University and the Director of the Equity and Health Innovations Design Research Lab.

Film

Online Viewing: January 18-28th
Q/A: Monday, January 25th 9:00am-10:00am PST

Lost in Memories


Director & film-maker Ruud Lenssen

We offer this film as a glimpse into a personal experience and story of dementia told by film-maker and son, Ruud Lenssen. Please note this film is very sensitive in nature and may be emotionally upsetting for viewers. Watch the trailer here, and learn more about the filmaker here


A link to the film will be provided for online viewing.

Image from the film Lost in Memories by Ruud Lenssen



Conference
Wrap Up

Thursday, January 28th, 9:00am-10:30am PST

Reflections and discussions about the future of design and dementia, as well as a sneak peak of our co-created conference zine featuring highlights and stories from the week. A print copy of the conference zine can be ordered on the Tickets page.

Talks

A

Series

5 short talks followed by a Q/A discussion with all presenters

Wednesday, January 20th, 6:00pm-7:45pm PST


Lessons Learned from Remote User-Centered Design with People with Dementia

Emma Dixon

In this paper talk we present a case-study of the use of remote methods for a user-centered design process which included interviews, low-fidelity prototyping sessions, and asynchronous evaluation of prototypes with tech-savvy people with mild to moderate dementia. The main contribution includes a discussion of the benefits and challenges of using this remote method with tech-savvy people with mild to moderate dementia.

Designing Dementia Care: Materialized Knowledge at the Sonnweid Care Home

Carolyn Kerchof

This talk explores the Sonnweid care home in Wetzikon, Switzerland, as a site where knowledge about designing for people living with dementia is produced. Two particular examples of the Sonnweid’s built environment—the “never-ending loop” and the care oasis—are used to illustrate how care knowledge has been translated into design knowledge, and how those environments have, in turned, transformed the way care is practiced there. Regarded internationally as trailblazing for both its care approach and built environments, the Sonnweid is a rich site to examine the intersection of care and design practices.

An immersive art-based approach to engaging with the embodied, sensory and affective experience of living with dementia

Gail Kenning, Jill Bennett, Volker Kuchelmeister, Natasha Ginnivan and Melissa Neidorf


The Visit is an immersive experience exploring the lived experience of dementia. This presentation will provide insights into how the artwork was created based from the interviews of people living with vascular dementia as they discuss their hallucinations and display confabulations. It will show how arts-based research can not only interpret and understand lived experience but can have transformative impact.

Scaling Participatory Methods for Cultural Change in Long Term Care Homes

Lisa Boulton, Caylee Raber

The Culture of Care project seeks to shift the culture of care in long term care homes from an institutional model, to a social, person directed model by uplifting the perspectives of the people residing in care homes; creating the space for them to shape the future of their care. Working in collaboration with health care leaders, staff, people living in long-term care and their families, design researchers engaged in participatory design research methodologies in order to foster relationships and conversations with people living in long-term care.In this talk, we discuss how participatory design activities can be scaled to create the possibility for large organizational systems change, through deep collaboration between organizational leaders, users and external designers.

We Need to Talk: collecting and using life stories in care 

Claire Brophy & Thea Blackler    


In this presentation we will discuss the research behind a concept aimed at improving the use of personal information about people living with dementia for care providers and services. Although professional and informal caregivers recognise that having person-centred knowledge such as life histories increased their ability to provide quality care, the use of such knowledge is not standard practice. Current methods of collecting and using this information are inconsistent and ineffective - challenges only compounded by the communication difficulties experienced by people living with dementia. This research champions the value of knowing the person, and of the richness of their life stories and experiences to the delivery of quality in dementia care.

B

Series
Talks

4 short talks followed by a Q/A discussion with all presenters

Friday, January 22nd, 9:00am-10:30am.


Assembling a ‘we’: Tracing the history of my doctoral research to the people who helped shape it

Christine Novy  

The Life Story Project took place at a day program for people living with dementia in the community. The project used storytelling and theatre arts to build bridges of connection and community. In this talk I show, through video and photos, how the dramatic arts were used by the participants to negotiate meaning and give a voice to their experiences. I also explain how my collaboration with them helped shape the design of my current doctoral research: Linking Lives Through Care: A narrative inquiry into relational care understandings.

Co-creating design opportunities for social technology in the context of dementia

Myrte Thoolen and Agnieszka Barbara Kolasinska   

Social engagement is considered to be one of the essential components of general well-being. Unfortunately, for people living with dementia participating in social interactions may become more challenging as the condition progresses. In an attempt to support people with dementia in maintaining the sense of connectedness, we explored the most common difficulties they face in the social context and identified design opportunities for improving their social participation. This work provides an overview of the role of design and technology in promoting and facilitating social involvement, as well as enriching the social experience of people with dementia.

The challenges of creating design requirements for products for people with dementia

Rita Maldonado Branco, Niels Hendriks, Lieke Lenaerts, and Andrea Wilkinson  

A European research project was set up to support the development and ameliorate the quality of products designed to enhance the lives of people with dementia. One major outcome of this project is the creation of a certification mark. To develop this certification, requirements for ‘good’ design for people with dementia need to be defined. This poses challenges due to the diversity and complexity inherent to dementia, and to the range of products on offer. We present the initial phase of this ongoing project, the uncertainties and challenges regarding the creation of design requirements and how the consortium overcame them.

Estonian Museums and People with Dementia: Experiences and Challenges

Anna-Kristina Rätsep

This presentation discusses through the lens of anthropological research the growing role of design in dementia care and its power to enhance the wellbeing of people living with dementia and their caregivers. Presenter will reflect upon the results of her ethnographic fieldwork, participant observation and interviews, conducted as part of her PhD studies in Estonian museums in between Autumn 2020-2021 Spring. An example of a well designed museum dementia program in Kumu Art Museum, one of the largest museums in Estonia and one of the largest art museums in Northern Europe, will be presented.

C

Series
Talks

4 short talks followed by a Q/A discussion with all presenters

Wednesday, January 27th, 9:00am-10:30am PST


Your Moments: Co-designing a Personalized Audio Player

Marjolein den Haan, Nicole van Essen, Rens Brankaert and Yuan Lu

In close collaboration with three participants, we created audio player 'Your moments' for and with them. It supports to stay in touch with who you are as a person, by connecting to memories of valuable moments in your life. The audio can be personalized with the users, because they can fill and appropriate it to their liking with e.g. poems, music and voice messages. From this project we learned how to address people's diversity in a fitting personal design, how to carefully involve users in the design process, and the influence of a stakeholder who enables using a design.

Exploring how a Multisensory Media Album can Support Dementia Care Staff

Ward de Groot, Gail Kenning, Elise van den Hoven, Berry Eggen

For dementia care staff working in residential facilities, it may be challenging to interact on an interpersonal and multisensory level with residents. In our research, a multisensory media album was designed to gain explorative insights in how dementia care staff could be supported to engage with their residents during their shifts. The design provided staff members with a multisensorial reminiscing activity for their residents, which was observed to be enjoyed by both.

SMILE: Capturing and Sharing Personal Photos to Stimulate Social Relations and Support Self-Identity in Dementia

Maarten Houben

Family members may lose touch with the everyday lives of people with dementia when they move from their home into long-term care, and no longer share the everyday moments that preserve identity and social connection. We present SMILE: an easy-to-use camera that captures and shares photos of residents with their caregivers or relatives. SMILE was used for four weeks in a long-term care setting by people with dementia, their relatives and care staff. Our results show that capturing and sharing photos provided family with info of the everyday lives of the residents, supported conversations, and offered dignity to the residents.

HCI and Design in the Context of Dementia

Gail Kenning, Rens Brankaert

Rens Brankaert and Gail Kenning, Editors of HCI and Design in the Context of Dementia, Springer will talk about why design in the context of dementia needs to be carefully considered and understand. They will provide insights and information about the contents and who would benefit from this book. They will also comment on how these approaches are needed more than ever because of the impact of the year of the pandemic

Workshops

Living Labs in pandemic times: how can Living Labs function when contact with people with dementia is denied?

W.1

Monday, January 18th 10:45am-12:15pm PST

Lieke Lenaerts, Niels Hendriks, Andrea Wilkinson, Rita Maldonado Branco

Contact with people with dementia is necessary in the functioning of a Living Lab, but how can this way of working be assured in times when contact with people is denied? The workshop will reflect on challenges that the COVID-19 crisis has brought to Living Labs, looking for possibilities within methods and processes to evaluate products without direct contact with people with dementia. Participants will brainstorm on new methodologies to evaluate products in times when social distancing is obligatory, contributing to the research into evaluation methods without direct contact with people with dementia.

Ways of remembering: Curating a Dignity Bank

W.2

Monday, January 18th 10:45am-12:15pm PST

Sudebi Thakurata and Probal Banerjee

There is more than one way in which the word or more importantly the idea of ‘memory’ is associated with the term ‘Dementia’. Very often the caregivers for people living with Dementia are not considered in terms of what they might be going through as their near and dear ones or someone they provide care for, move through various stages of Dementia. How do they cope with the loss of cognition, memory, communication? How do their relationships change and how might their sense of self  be impacted? How much agency does a person who is living with Dementia have about her/his future as her/his relationship with the past and present changes? Are their perspectives included in decisions? We propose to bring in some of these debates and discourses in the form of the co-creation of a Dignity bank with diverse stakeholders. The idea of the Dignity bank is to help people facilitate the creation of a ‘museum’ of their own selves, of what they want to remember, what they want to be remembered for, what would they want if they lose a sense of self, what kind of choices should be made about them in future, so that true inclusion can be a part of the design of their lives, when the loss of cognition or memory sets in.

With Me: Co-Creating Games for Connection

W.3

Monday, January 18th 6pm-7:30pm PST

Christine Lhowe and Robin Schilke

The strongest evidence of our shared humanity is our desire to build meaningful relationships throughout all phases of our lives. The With Me workshop utilizes design as a tool of inclusion to bridge divides in physical and mental abilities. Through virtual interactions, participants will share life lessons and co-create an experience that propels connection. Participants will be asked to put aside past knowledge and experiences in order to truly listen to one another. By building the foundation for empathetic relationships, we will help break stigmas related to dementia and strengthen the ability of those suffering from memory loss.

Perspectives: How To Guide

W.4

Tuesday, January 19th 9:00am-10:00am PST

W.5

Thursday, January 21st 6:00pm-7:00pm PST

We are offering the same workshop twice to accommodate various timezones. Interested participants should sign up for one of these two sessions.


Jon Hannan, Caylee Raber, Nadia Beyzaei -  Health Design Lab, Emily Carr University Dona Levi, Vancouver Coastal Health

Perspectives is an intergenerational program that brings together design students with people living in care homes, through storytelling activities to co-create publications featuring life experiences and perspectives. Created and run by Emily Carr University, we have now created a How-To-Guide to enable other design schools and care homes to run their own version of the program. In this presentation and discussion we will describe the program in detail, its purpose and benefits to both students and people living in care homes, and provide suggestions for how the program can be run in your communities. We invite  design instructors/faculty, as well as care home staff to join us in a discussion to learn more about this program. A How-To Guide book will be available for purchase. More details can be found at www.PerspectivesProgram.ca

Let's discuss the past, present and future of design & dementia

W.6

Tuesday, January 19th 10:30am-12:00pm PST

Niels Hendriks, Claire Craig, Arlene Astell, Andrea Wilkinson

With an ever growing number of people with dementia, the number of researchers and designers focussing on creating tools and designs for and with people with dementia is increasing as well. Researchers and designers who have been active for a long time in design and dementia see many so-called ‘givens’ being re-invented again and this happens both in the methodology of design and dementia and in the products that are created . The main goal of this workshop is thus to identify what is ‘given’ in design and dementia and what the crucial questions for the future might be.

Raising the Curtain: Enacting the "Third Space" in Dementia Research

W.7

Tuesday, January 19th 10:30am-12:00pm PST



Colleen Reid

"Raising the Curtain on the Lived Experience of Dementia" is a multi-year community-based participatory research project on the Sunshine Coast, BC.  Project collaborators include researchers, artists, health care workers, students, and individuals with the lived experience of dementia, who are collectively thinking about and addressing dementia as a complex social problem. In this unique collaboration, we are committed to creating a ‘third space’ (Leavy 2015) – a space where project collaborators move beyond their designated roles and expertise to produce enhanced meaning and understandings. In this workshop we will describe this research collaboration and provide a multi-media engagement on some key project findings related to the themes of citizenship, inclusion, and autonomy.

A Virtual Visual Matrix focussing on 'The Visit'

W.8

Tuesday, January 19th 6:00pm-7:30pm PST




Gail Kenning and Natasha Ginnivan

This workshop will offer participants the opportunity to engage in an innovative arts engagement experience. By collectively viewing the  'Visual Matrix',  workshop participants will come together to respond to an artwork featuring a character with dementia as she talks about her hallucinations and confabulations. This is an opportunity to experience and understand the Visual Matrix associative thinking approach, and see how it can be used to assess arts and design experiences and artefacts.

Developing Collaborative Dementia Friendly Research Practices 

W.9

Monday, January 25 10:30am-12:00pm PST

W.10

Monday, January 25 6:00pm-7:30pm PST

We are offering the same workshop twice to accommodate various timezones. Interested participants should sign up for one of these two sessions.

Garima Sood, Gloria Puurveen, Daisy Couture, Avery Milne, Jennifer Stewart

How can design inform research; how can research inform design; how can we harness the strengths of these processes to develop best practices for engaging people living with dementia in research & design collaborations? This workshop, organized in collaboration with Alzheimer’s Society of B.C. and Emily Carr University’s Health Design Lab,  will serve as a platform to collectively formulate best practices for engaging with people living with dementia in research and design collaborations. Due to the shifting global context of the pandemic, the conversation will largely focus on developing practices of virtual engagement in dementia-friendly research and design. We invite people living with dementia, caregivers, designers, and researchers to join us in sharing your experiences of research and design collaborations. Together we will share knowledge around partnership building, virtual engagement and recruitment strategies to identify best practices of centring people living with dementia in meaningful collaborations.

 

Raising the Curtain: What we learned over three years of making art with people living with dementia

W.11

Monday, January 25th 10:30am-12:00pm PST




Chad Hershler, Sandy Buck, Rolf Reynolds, Ulrich Schaffer, Traudi Schaffer

Over the past three years, a group of artists, researchers, health care workers, care partners and people living with dementia have been meeting regularly to make some art and learn together.  Join us as we play some games, explore some creative exercises and share some of what we've learned through the process.  This workshop is for students, people living dementia, their care partners and professionals working in the field of dementia care.

Co-creating the Conference Zine

W.12

Tuesday, January 26 9:00am-10:30am




Carolyn Kerchof and Jon Hannan

Attend this collaborative discussion and workshop to contribute to the content of the Dementia Lab 2021 zine! We are co-creating a non-academic conference zine to document moments from this year’s Dementia Lab. No special skills, supplies, or preparation is necessary. Just bring yourself and a few conference reflections.

Print copies of the conference zine can be ordered through the Conference ticket page, however everyone contributing through this co-design workshop will receive a free copy.

Art as Activism: Flipping Dementia Stigma on its Ear

W.13

Tuesday, January 26th 10:30am-12:00pm PST




Lynn Jackson, Myrna Norman, Gloria Puurveen

Over the past year, a group of people living with dementia have been meeting to discuss tools and strategies to ‘flip dementia stigma on its ear’. One such tool was thinking about and experimenting with how we could use arts-based methods to illustrate or describe our experiences with stigma and how we might challenge stigmatizing situations. In this interactive workshop, co-led by people living with dementia, we will present a virtual exhibition of the art-work that emerged from our conversations and talk about art as activism. Workshop participants will be invited to join in the conversation through discussion and art-making using materials that are available at home.

“A matter of perspective"; design for autonomy for people with dementia

W.14

Tuesday, January 26th 10:30am-12:00pm PST





Bard Wartena, Job van 't Veer, Lars Veldmeijer & Nick Degens

The workshop will focus on the value of autonomy, in both design (through human-centred design) and healthcare (through biomedical ethics), ascribed to people with dementia. These values cause friction in most design practices; however, they can be valuable tools in unravelling missing links in the design rationales of existing or emerging products through perspective-taking. This is why for this workshop, we will let participants explore a point of view that is different from their own (either PWD, formal caregiver or informal caregiver). Through this, participants will look for the balance in the different meanings of autonomy and whether products resonate autonomy.

(Re)designing for the moments in-between: expanding an existing range of children books with proposals for non-stigmatizing [interactive] books for people in a later phase of dementia

W.15

Tuesday, January 26th 10:30am-12:00pm PST




Andrea Wilkinson, Lieke Lenaerts, Niels Hendriks & Rita Maldonado Branco

During this workshop participants will propose books to be used by people in a later phase of dementia. To prepare participants to design a book for people with dementia, we will make use of the empathic handover approach as described by Smeenk and colleagues (2018). Storytelling and the participants' own experiences will be used to create an empathic understanding for people with dementia. Participants will propose a book and create a prototype spread with the tools they prefer to use. The workshop will reflect on how the empathic handover approach influences the design process and the book outcomes.

[Re]collect: co-designing a method for collecting stories

W.16

Wednesday, January 27th 6:00pm-7:30pm PST





Dr Claire Brophy and Prof Thea Blackler     

In this co-design workshop, we will introduce a set of cards designed to prompt conversation about life history in the context of a dementia diagnosis. Designed to stimulate conversation with the person with dementia, the cards use different types of cues and ask for different types of experiences to help elicit memories and life stories. As part of ongoing development of the cards, participants will gather in small groups to discuss the existing themes in the cards; engage in a hands-on exercise to design cards of their own; and collaborate to consider ways technology may be used to enhance the method.

Time Traveller: Developing culture through participation and play

W.17

Wednesday, January 27th 6:00pm-7:30pm PST



Lisa Boulton, Garima Sood, Morgan Martino 

Time Traveller is a co-creative game intended to help groups of people to share personal stories and, together, develop the unique culture of the group. Rooted in storytelling, mindfulness, placemaking and sensory engagement - this game supports players in expressing their values and understanding how they can be represented amongst the other voices around the virtual table. At its core, Time Traveller is about participation, identity and emergent culture. In small groups, you will be guided through sensory storytelling from your very own home. Together we will travel back in time, inspired by the things, thoughts and feelings we hold dear. Through the game, we'll describe how these meaningful moments, the time capsules of value, are present in our world today. Finally, the small groups will assemble a shared narrative of value to share with the larger group towards the end of the session. This game was developed in collaboration between people living in care homes, Vancouver Coastal Health and the Health Design Lab at Emily Carr University.This workshop is open to absolutely anyone. Those living with invisible disabilities, speech or hearing impairment and those that have low fluency in english are welcome to join with a support friend.

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