Yes, But Do You Care?
Fear is a major driver of societal stigma surrounding all dementias. Oftentimes, fear comes from a place of misunderstanding or lack of knowledge – the ‘fear of the unknown’. As a research scientist, I work to promote open dialogue and better understanding of dementia. In doing so, I hope to eliminate the shame, embarrassment and isolation that can be felt by people affected by the disease.
I first started collaborating with the Dementia Carers Campaign Network (DCCN) three years ago as part of my research project exploring fear of dementia. The DCCN is a group of people based in Ireland with experience of caring for a loved one with dementia. Their aim is to be a voice for dementia carers and to raise awareness of issues affecting families living with dementia.
It was through conversations with DCCN members and advocates from The Alzheimer Society of Ireland that I became involved in Yes, But Do You Care?, a new cross-disciplinary installation piece created by visual artist Marie Brett and choreographer/performer Philip Connaughton, and presented by the Irish Museum of Modern Art. I was asked to come on board as a scientific advisor to help document carers’ experiences as the project progressed, and, as it turned out, through the COVID-19 pandemic.
Having this opportunity to work with DCCN members over the past three years has been a pleasure and a privilege. For me, the final piece offers a powerful glimpse into the lives of family carers and those they care for. In a time when so much of caregiving goes unseen and unheard, projects like this highlight that people’s lived experiences are crucial to understanding how we as a society can better support people affected by dementia.
Photograph by Marie Brett
Watching the piece, I see peoples’ stories reflected back at me. I see the person with dementia and the family carer, their frustrations, discomfort and isolation. At times, the piece feels almost sinister, while other times, there is a sense of calm. In the words of DCCN member Ray Cregan, the piece “conveys how desperate things can be when no one is looking”. For DCCN member Máire-Anne Doyle, the piece shows the distress of feeling like “you’re screaming inside permanently.”
Yes, But Do You Care? also tackles the complexity of caregiving in the context of Ireland’s new capacity legislation: the Assisted Decision-Making (Capacity) Act. This Act adopts a rights-based approach to capacity, whereby people with dementia are supported to make decisions about their own affairs with minimal or no intervention. Though seen as a necessary step towards recognising the rights of people with dementia, Yes, But Do You Care? depicts the struggle of applying this legislation in daily life.
As DCCN member Susan Crampton stated, “I’m hoping that legislators will look at this and see the other side of bringing out legislation, putting it there and expecting us – carers, people with dementia and the public – to have some idea of what it’s about and understand it, and how to apply it to real life”.
Overall, carers felt represented by the piece and many people, like DCCN member Richard Dolan, expressed a wish to “help others coming along the road”. Others found the process of participating in the project to be cathartic. In the words of Susan: “if there is any other way of looking at what we are facing and bringing it to the public, it has to help, it has to make a difference.” I couldn't agree more.
Watch DCCN members discuss their experiences of collaborating on Yes, But Do You Care?
Following its successful screening, Yes, But Do You Care? is joining IMMA’s National Collection in 2021. Read more on the IMMA website.