At the conference, Dr Duggleby says she will discuss findings from several studies from her Living With Hope programme of research, which includes research studies of ‘hope’ for people with advanced cancer, family caregivers and healthcare providers. One of the presentations will feature a newly developed online Changes Toolkit to support family caregivers and palliative patients. “Then the final presentation will focus on our new Living with Hope programme for family caregivers of persons with dementia in long-term care facilities.” The studies have been documented in four documentaries; one of which – Living with Hope – has received two international awards and will be shown at the conference. Outside work Dr Duggleby enjoys a wide range of interests, including hiking, piano, playing with grandchildren and reading. “My husband and I also enjoy season tickets to our Canadian Football Leagues and the Edmonton Symphony Orchestra.”
Associate Professor Colm Cunningham Associate Professor Colm Cunningham remembers the day his interest in dementia and caring for those with its symptoms was sparked. “It was a lightning bolt moment,” he says. He was in a museum where a patient he’d been caring for as a social worker was holding court to a crowd of people on a subject she clearly knew a great deal about. People with dementia, he realised, were being treated as a collection of symptoms and not as people. Having been a nurse and social worker, Professor Cunningham joined the University of Stirling’s Dementia Services Development Centre, and now divides his time between Scotland, where he is Visiting Fellow in Dementia Design and Practice at the University of Edinburgh School of Health in Social Science, and NSW, where he is Director of The Dementia Centre at HammondCare. He believes that looking at dementia research in light of carers’ experiences and expertise gives greater understanding into the lives of patients, which will improve the standards of care they receive. “Carers can often become caught up in a system, treating symptoms and not the person. If you forget the person you institutionalise people,” he says. “Research on dementia care shows if you don’t look at what a patient is trying to communicate you can misdiagnose them.” People with dementia are often labelled as aggressive because their behaviour is misinterpreted. A patient’s shouting, for instance, can be a sign of their deep frustration at their inability to get a point across to carers. “It can become a self-fulfilling prophecy.” He cites one recent example of a man shouting at staff who simply wanted hot milk on his cereal. “It’s a challenge for all carers to provide people with dementia the opportunity to communicate. Sometimes the solutions aren’t easy, but we need to try.” He’s aware that many carers of his era who are now in management haven’t reviewed their processes of care for people with dementia. “Carers need to learn new ways of understanding, and to keep questioning. Staff have to be constantly attuned.” To help carers understand, at the conference he’ll be talking on a range of subjects aimed at getting people to enter the world of someone with dementia.
Page 5 | August 2014