Arts for Dementia
is a curated platform of arts based information for care partners looking for positive and fun activities to stay connected to their loved ones who are affected by Alzheimer's disease and other dementias, at home and in the local community. The project was developed at DementiaHack’15 and it encourages Culture Shift advocacy.
Our inspiration is to promote empathy within the global society. We are looking for champions to bring arts based projects into local communities, disseminate knowledge about engaging activities and meaningful lifestyles with dementia.
The Arts for Dementia Backstory
Empty shells – living dead – a never-ending funeral – these were some of the terms I encountered right after my mom’s diagnosis with Alzheimer’s Disease in April 2014. About a year before the official diagnosis, which was treated like a verdict, I realized neither my mother, my father nor I had the tools to cope with her new and unstable condition. I was motivated to learn more about the medical condition and find effective ways to support my mom. I wanted to understand what she was going through and how I could help her and my father, who assumed the role of primary care-partner.
However, whenever I Googled the words Alzheimer’s or dementia, I was bombarded with countless articles, websites, commercials etc. telling me how grim our family’s situation was and how devastating our future is bound to be. It dawned on me that the tragedy-infused language about dementia wasn’t helping me much. Nor was it helping my parents. To really help my family, I needed to apply my skills as a cultural critic to explore the dominant perceptions of dementia and, hopefully, change them by stirring social action.
In September 2014, when I started my PhD at the University of Toronto, I also founded the MemoryLoss research initiative with the support of Wilfrid Laurier University’s Centre for Memory and Testimony Studies. With the MemoryLoss research group, I’ve built an interdisciplinary community of thinkers to discuss memory loss on the broader cultural level. The thought-provoking conversations and the 2015 MemoryLoss Speakers Series that I curated led to the MemoryShift conference in September 2015. These activities helped me to realized I wanted to direct myself towards social and cultural change to make a difference for those living with dementia and their families, because let’s face it: Alzheimer’s Disease is not just a medical condition – it’s a cultural phenomenon that affects society as much as it does people labeled as ‘Alzheimer’s patients.’
Bringing Science and Technology to Arts for Dementia
Arts for Dementia
came out of DementiaHack, a weekend-long event in Toronto in November 2015, where developers, designers, scientists and medical professionals came together to hack solutions for a set challange: dementia. Going back to my personal experience, I had seen that it took me quite a while to find positive content and solutions to engage meaningfully with my mom. The process of searching requires a lot of effort, time and emotional availability – something that caregivers often don’t have. The idea for Arts for Dementia came from my interactions with my mom, the improv comedy workshops and classes I took on music in healthcare and narrative medicine. At the pre-hackathon meetup, I pitched my concept of an educational app to help family and institutional care partners engage with the people they care for in a positive and fun way using arts based methods including music, improv and storytelling. The team came together with two web developers, a marketing strategy professional and a speech pathologist. We set out to aggregate the upworthy resources that were already dispersed across the world wide web to make them more accessible to people around the world.
We developed a curated website catering to the needs and interests of carers like myself, who want an alternative to the tragedy-infused language so we can be empowered to support our family members and ourselves. artsfordementia.com offers primary care-partners, like my dad, a wide range of arts-based techniques and activities to engage with loved ones. It invites users to discover and submit existing websites, apps, events, articles, podcasts and practical music and arts-based techniques and feedback for a better, happier, more positive life experience with dementia. It also invites community members to initiate projects in their local communities thus promoting empathy and social accountability on a global scale.
Bridging the gap between research and life
With the immense amount of dementia-related research that exists, there is a gap between these studies and practical applications for carers. As such, Arts for Dementia
is a valuable resource for researchers to uncover insights on useful tools for carers. Researchers can also receive feedback on the applicability of their work to the much-needed Cultural Shift. Arts for Dementia is easily scalable to a global audience as the platform can be adjusted to different languages and can be used anywhere where Internet and art consciousness is present.
We are building a community of potential enablers, partners and sponsors to create strategic collaborations and exploring health and innovation funding in Canada and around the globe to build out the platform so it’s ready to be tested with users.
I believe Arts for Dementia
can minimize the isolation of people living with the diagnosis of dementia and their families by catalyzing a paradigm shift that uses arts based methods to improve communication and quality of life for people with dementia. And when Arts for Dementia is adapted in different places, a community will develop and facilitate learning from each other’s successes.
The project’s success will be measured by the demand and engagement: We’ll be inviting dementia-related organizations, clinicians and professionals to refer their clients to the website/app and tracking the numbers of people using it, the quantity and quality of user feedback, and positive terms about dementia and Alzheimer’s used in search. My initial goal was to help my family. Arts for Dementia’s goal is to catalyze a paradigm shift and reframe dementia by using the arts and creating positive and fun experiences.
In Canada, in 2011, there were 747,000 people living with dementia. By 2031, that number is expected to grow to 1.3 million. In the UK, there are an estimated 850,000 and in the U.S., there are more than 5 million people living with a constantly changing reality, a reality that we have no skills to cope with.
PwC reports that 74% of healthcare clinicians say that non-traditional venues are improving individual access to healthcare. Arts for Dementia
is using content and technology to create a new vision of life with dementia, supported by positive solutions and a community that steps beyond loss, into life.
Liza Futerman, MSt, MA, CIHR-sponsored PhD Researcher
Team Leader, Arts For Dementia
Researcher and Program Designer & Developer, Centre for Memory and Testimony Studies
Wilfrid Laurier University, Canada
Vanier Doctoral Scholar, Centre for Comparative Literature & Anne Tanenbaum Centre for Jewish Studies
University of Toronto, Canada
Liza Futerman is the founder of De-pathologizing Dementia and the author of Keeper of the Clouds.
If you would like to contact Arts for Dementia, please fill out our contact form