The Social Reframing of Dementia: A Timely Conversation

reframing

An interdisciplinary workshop held in March 2017, Reframing Dementia as Social and Cultural Experience, looked at reframing the negativities surrounding the ‘dementia habitus’ and bring to it value, life, laughter and relationship.

Organised by Dr Gaynor Macdonald, Department of Anthropology, in collaboration with Associate Professor Jane Mears, Social Policy, Western Sydney University, and the CDPC, the workshop brought together academics across different disciplines, representatives from leading aged care organisations, experienced nurses, as well as people living with dementia and their carers.

This diversity made for rich discussion around an experience that is overwhelmingly framed in biomedical terms, often leaving the complex social and relational challenges of dementia unaddressed.

The workshop was an eye-opener for me. Both my parents, and parents of several friends have died with dementia, so I have always known finding a cure is important. But after the workshop, I can see how important improving quality of life is.

The vision of the workshop was to challenge the dominance of bio-medical approaches to dementia. Participants examined stigmas and stereotyping in the wider society that make life hard for those living with dementia, including family.

Just how diverse the approaches to this reframing were evidenced from a number of papers presented. Presentations looked at better support for those directly involved; more effective communication with people with dementia; reconceptualising ‘care’ as a total social responsibility; and exploring ways to create a more caring society.

This workshop reinforced that many of the difficulties that come with a diagnosis of dementia are not medical or cognitive issues, they are social. Ignorance and stigma are issues that need more thought, and as we design interventions to address attitudes and behaviours we need to understand how they come to be formed and reinforced, and ways to create change.

Reframing involves understanding the reasons for the negativity and fear surrounding dementia, and finding innovative ways to disrupt and move beyond these. It involves interrogating assumptions attached to dominant models of care. The search for a cure and improving quality of life need to be better balanced within the research, budgetary and policy space.

So many talks presented a different view from what I am used to, [where] dementia issues centre around behavioural challenges and ensuring the family have an ACP in place. Patient-centred care sounds great but task orientation persists.

The value of the social sciences in providing new and critical perspectives on social attitudes to dementia, and to dementia care, was seen by participants as an integral contribution of the workshop.

It was refreshing to reflect on what reframing dementia can mean from the perspective of a person living with cognitive decline, their families, service managers, and researchers. It affirmed that reframing dementia means rethinking our silo-approach to research and ensuring that a whole range of voices are listened to.

The imperative to listen to the experiences and insights of those directly impacted, including carers, was a recurring theme. Participants discussed assisting people to deal with complex relationship issues in ways that make sense to them, including raising awareness and understanding of the real impact of dementia across the whole family.

The Reframing Dementia project aims to initiate a communication network, inviting opportunities for collaboration and sharing of cross-disciplinary projects. This includes the publication of papers emanating from the workshop. Changing the negative dementia narrative is an ambitious goal but it is an urgent one which ultimately involves all of us.

For more information on the workshop, presenters and paper abstracts, see: Reframing Dementia

Dr Gaynor MacDonald, University of Sydney.

Presentations are available to CDPC members via the CDPC SharePoint site.