In this article, we share insights regarding an arts-based research project where carers of people with dementia conveyed their experiences in cloth. Carers face high rates of mental ill health and burnout, while forming a largely undervalued and unrecognised workforce. Through this project, carers’ knowledge was valued and amplified using an innovative methodology – craftivism. During a series of five workshops in 2021, a small group of carers, researchers and artists gathered online to develop an exhibition of craftivist textile works. They evoked the complexity of their makers’ journeys supporting loved ones at the end of life, finding joy and meaning despite grief and isolation. Making and crafting, together, we built community and highlighted the importance of the relationships at the heart of care: holding life’s threads. This article contributes to a growing literature surrounding arts-based methods in qualitative research, advocacy, and community life, while providing another platform to share and celebrate the stories of all those involved in the project.


craftivism, dementia, care, carers, qualitative methodology, arts-based research

Author Bio(s)

Chloe Watfern is a Communications and Policy Postdoctoral Fellow at the Black Dog Institute and a Research Associate with the Knowledge Translation Strategic Platform of Maridulu Budyari Gumal SPHERE. Please direct correspondence to c.watfern@blackdog.org.au

Dr. Gaynor Macdonald was an anthropologist, an independent certified trainer/consultant with Positive Approach to Care, and ran Dementia Reframed, a community-based team of dementia carers who share creative and supportive information to carers and others living with the impacts of dementia. She died unexpectedly in July 2022. We feel her loss deeply.

Michele Elliot is an artist, educator and community facilitator based in the Illawarra region of New South Wales. She is one of several artists-in-residences with SPHERE.

Lynne Stone is a former school principal who has been supporting her husband and facilitating his communication since his diagnosis of primary progressive aphasia in 2015.

Imelda Gilmore is a dementia advocate, a voluntary role she has fulfilled since caring for her husband who had young onset Alzheimer’s disease and died aged 68 in 2016.

Sarah Wallace cared for her husband Bob after he was diagnosed with Lewy Body Dementia. She had the skills to care for her husband, having worked in the UK and Australian health systems, but she could not have imagined the nightmare of dealing with the Australian aged care system. She has recently published a book about the experience, Behind Closed Doors: One Family’s Journey Through the Australian Aged Care System.

Manuel Tecson is a chef, a son, and carer for Monica who was diagnosed with Alzheimer's disease in 2016.

Najla Turk is a published author, seasoned educator, diversity consultant and dementia advocate. Since her husband’s diagnosis of early onset dementia, Najla has been committed to supporting carers as well as raising awareness about the fast-spreading disease to help reduce the stigma amongst culturally and linguistically diverse communities.

Penny Bingham is an advocate for people living with dementia and their care-ers. When her husband was diagnosed with Lewy body dementia in 2013, she enrolled in the University of Tasmania's Bachelor of Dementia Care and subsequently became an educator for Dementia Australia. She is actively involved in a range of community-based dementia programs in NE Victoria.

Jane Mears is an Associate Professor in social policy. She has worked as an academic, a teacher, community activist and advocate for the past 40 years. She works on collaborative engaged action research projects with communities and government in the areas of women and caring, aged care and violence against older women.

Associate Professor Ann Dadich is internationally recognised as an expert in health service management, notably knowledge translation. She holds editorial appointments with leading academic journals, including the Australian Health Review and the International Journal of Environmental Research and Public Health. She is also the Deputy Director of the Consumer and Community Involvement and Knowledge Translation Strategic Platform of Maridulu Budyari Gumal SPHERE.

Barbara Doran (Ph.D.) specialises in identifying creative opportunities that respond to complex challenges and putting them into action. She is an experienced speaker, mentor, educator, project innovator and artist who directs her energies towards building our collective capacities to improve how we live. Barbara has over 20 years of experience working in the realms of collective well-being including public health, urban and regional planning, health psychology and the arts.

Katherine Boydell is Professor of Mental Health at the Black Dog Institute. She is also a Professor in Medicine at the University of New South Wales, an Adjunct Professor within the Department of Psychiatry and Dalla Lana School of Public Health at the University of Toronto, Adjunct Professor, Graduate Program in Theatre at York University, Toronto, and Director of the Consumer and Community Involvement and Knowledge Translation Strategic Platform of Maridulu Budyari Gumal SPHERE.


We wish to acknowledge the support of the Centre for Carers Research at the University of Technology Sydney, the Black Dog Institute, and Maridulu Budyari Gumal SPHERE.

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