She's still fit....it's the mind that's haywire...' Family understanding of dementia as a life limiting condition

Death Down Under Conference, June 27-28 2011, University of Sydney Abstract Title: “She is still fit...it’s the mind that’s haywire...”: Family understandings of dementia as a life-limiting condition. Presenter (and first author): Fran McInerney, Assoc Prof Aged Care, Australian Catholic University, Melbourne & Catholic Homes, Melbourne, Victoria. Email: fran.mcinerney@acu.edu.au Co-authors: Andrews, Sharon, Wicking Dementia Research and Education Centre, Menzies Research Institute, Tasmania. Email: Sharon.andrews@utas.edu.au Donohue, Cathy, Australian Catholic University, Melbourne, Victoria. Email: Catherine.donohue@acu.edu.au Toye, Chris, Curtin Health Innovation Research Institute, Curtin University, Western Australia. Email: c.toye@curtin.edu.au Robinson, Andrew, Wicking Dementia Research and Education Centre, Menzies Research Institute, Tasmania. Email: Andrew.robinson@utas.edu.au Abstract: Increasingly, dementia is understood as a progressive, global, life-limiting condition for which a palliative approach may be the most appropriate care frame. It is estimated that half of those living in residential aged care facilities (RACFs) in Australia have a likely diagnosis of dementia. For those experiencing more advanced stages of the condition, their capacity to engage in care planning and decision-making is significantly diminished, and family members are increasingly called upon to negotiate care with facility staff. Little research has been undertaken into how family members of people with dementia (PWD) understand the condition, its relationship to mortality, or the potential of palliative care in this context. This paper reports on part of a larger study conducted in two Australian capital cities exploring communication between formal and informal carers in RACFs, and focuses on family members’ constructions of dementia. Findings from fourteen (14) semi-structured interviews with family members of PWD suggest that dementia is rarely understood as a life-limiting condition. While the more problematic behavioural manifestations of dementia were clear to respondents, the link between dementia and other life-threatening or life-limiting symptoms was rarely made. Some of the implications of this include that failure to recognize the physiological symptoms of dementia may contribute to inappropriate and burdensome treatments for those in more moderate and advanced stages. The paper explores possibilities for raising awareness of dementia as a terminal condition.