Dementia is a confusing condition, not only for those who have it but for the friends and family of those diagnosed with it. People with dementia can have moments of absolute clarity in the midst of complete confusion; they can make very perceptive remarks and share intimate gestures or looks while everything else around them seems passive or lost.
It is these poignant, sometimes beautiful, sometimes heartbreaking moments in the lives of people with dementia that artist Marie Brett and musician Kevin O'Shanahan capture in the film E.gress, which is on a tour of art galleries throughout Ireland until mid-2016 (see panel below).
Brett and O’Shanahan say the film explores the “twilight world” of dementia. Unlike most depictions of the disease, it highlights the personalities behind it. So we see a woman talking to herself in a mirror, another woman with vivid expressions of sadness, anger and loss, and a man grappling to remember the name of a local musician.
O’Shanahan’s music provides an ethereal and evocative backdrop to these vignettes, while Brett’s camera work provides layers of meaning, moving from the past to the present and back to the past again.
While making the film, Brett and O’Shanahan spent a lot of time with 18 men and women with dementia, either in their homes or in the residential care homes where they lived.
Family members and care workers also contributed to the work.
Julie Murphy, a community worker with HSE South, says their approach to dementia is "potentially liberating not only for those connected with the condition but also for the wider society in which people with dementia live and belong".
Brett, who previously worked with families whose babies had died (The Amulet explored the hidden world of infant loss) admits to being drawn to "culturally shunned and tricky subjects often related to loss and human suffering".
“I was intrigued with the idea of people being physically present and cognitively absent and wondered what does it mean to occupy such a place in the world, for both them and us,” says Brett.
“Dementia seems to be all around us, locally and globally, but the acute experience isn’t really spoken about. This film allows people with dementia to communicate in a way they rarely have a chance to. Viewers’ responses so far have been massively positive.”
Jon Hinchliffe from the Alzheimer Society of Ireland finds the work "remarkably edgy, risky and very important". He says the artists worked for a long time with clients at the Cork care centres.
“The staff and clients came to trust and respect Marie and Kevin’s approach. Inviting people who have issues of capacity and ability whether they want to do something is an ethical issue, but we also must ask ourselves if they have a right to do something that we might consider stupid or embarrassing,” Hinchliffe says.
The feedback from family members about the film has been generally positive, according to Hinchliffe.
“One of the recurring themes from families was how the film recognised their loved ones as people, not as a number or a set of symptoms. Personally, I feel that I learn something different about the people every time I watch the film,” he says.
Brett says she specifically didn’t seek out information about the people before filming.
Prof Rose Anne Kenny, director of the Mercer's Institute for Successful Ageing, which will open in 2016 at St James's Hospital, launched the film at the Irish Museum of Modern Art (Imma) this month.
“Involvement with creativity and the arts is associated with better physical and mental health. Through our research, we have found that even inflammation and the immune response are influenced by social engagement and creativity,” says Kenny. She says projects like this acknowledge the role of the artist and creativity in successful ageing.
Art film on dementia on tour E.gress, a film exploring the twilight world of dementia by Marie Brett with music by Kevin O'Shanahan, is on show at the Irish Museum of Modern Art (Imma) until December 13th. It will tour to the Cork Alzheimer Society of Ireland Centre (February 11th), Model Arts Centre, Sligo (March 3rd- April 28th, 2016), Waterford Alzheimer Society of Ireland Centre (April 14th), 69 O'Connell St, Limerick (May 12th), the Butler Gallery, Kilkenny (May 26th) and back at Imma (July 14th). A book of essays by health and arts professionals accompanies the tour. See Mariebrett.ie