Dr Michael Chapman1,2, Prof Jennifer Philip3,4,5, Prof Paul Komesaroff6
1Canberra Hospital, Department of Palliative Care, Woden, Australia, 2ANU Medical School, Canberra, Australia, 3Melbourne University, Department of Medicine, Parkville, Australia, 4St Vincent’s Hospital Department of Palliative Care, Fitzroy, Australia, 5Victorian Comprehensive Cancer Centre, Parkville, Australia, 6Faculty of Medicine, Nursing and Health Science, Monash University, Melbourne, Australia
The focus on personhood within dementia care suggested a paradigmatic change which never resulted. While some care practices have changed decades of person-centred dementia care have left the consequences of the fear of dementia as a monstrous decline, and as a catastrophe for healthcare provision largely unchallenged. New approaches to engage with the problem of dementia need exploration. Specifically, novel understandings of the experience of dementia, and means to grapple with its impact on society are required.
Systems thinking provides a method to reconceptualise dementia as an experience of dynamic reflective systems. The challenges of dementia can be understood as perturbations which are responded to through systemic change states within biological, social and meaning systems. A recent study of interviews of fifteen dementia networks including persons with dementia, family-carers and health-carers provides evidence for this perspective within social systems. The interactions of dementia networks demonstrate perturbations of these social systems, which interlink with responsive change processes resulting in stability or transformation. Due to this, dementia is experienced by networks and not individuals.
This radical interpretive shift has fecund implications. Dementia is not a “disease” but an ecology. This ecology is contributed to by the experience of dementia, and how this experience is interpreted and responded to within human systems. Dementia’s ecological nature implies that much of our “horror” lies within our responses, rather than just the condition itself. Additionally, it suggests that “curing” dementia will not reverse changes that have arisen in our lifeworld experience but will change us further
These considerations instil caution and optimism. While we should not feel confident that our approach to responding to dementia is now “right”, systems thinking suggests that adaption to the challenge remains possible. The ecology of dementia is not static, and engaging with it has never been more necessary.
Michael Chapman is a geriatrician and palliative medicine specialist whose role is the director of palliative care at Canberra Hospital, and the chair of the ACT Palliative Care network. He is a lecturer at ANU and UTS with research and educational interest in ethics, communication skills, and the provision of palliative care. Michael has recently submitted his thesis entitled “The ethics of decision-making in dementia: Making sense of senselessness”.