Positive dialogue on dementia needed

public domain team at workshop

A workshop, ‘Dementia in the Public Domain’, that came out of a three-year study on the topic of public attitudes towards dementia and its implications for policy and public health interventions was held on 19 November 2018.

It was attended by representatives from a wide spectrum including people with dementia, carers, people working with provider organisations, policy-makers, national and local campaigners and others concerned with influencing the public agendas on dementia.

The workshop, held at the University of Melbourne, School of Social and Political Sciences, was facilitated by the study lead investigator, Professor Simon Biggs and research fellows on the project team, Dr Irja Haapala-Biggs and Mr Ashley Carr. Danijela Hlis, Tara Quirke and Tony Ramshaw from the project consumer advisory network also contributed.

Commenting on the findings of the study, Professor Simon Biggs said campaigning tells us a story about dementia as it both reflects and affects public attitudes.

“Hopefully, ‘Dementia in the Public Domain’ will provide support for positive forms of public dialogue, through engaging with specific voices and campaigner’s priorities.

“We are being told that the social consequences of dementia needs much more airspace if we are to improve the lives of people with dementia and their carers,” he said.

Dr Irja Haapala said the study found an important factor to consider is that different voices have different priorities.

“When it comes to effective campaigning. Our findings and discussions have important implications for understanding dementia and how to get public health messages listened to,” she said.

Ashley Carr stated that: “this is particularly valuable because people with dementia and professionals from the service industries have been under-represented in research in this area”.

The first part of the workshop reported findings from the study on the social impacts of dementia and identified priorities followed by small group discussions and recommendations for future action.

About the study
The study (report out in the new year) conducted 130 in-depth interviews, firstly, from the perspectives of people with dementia, carers, health and social work-related professionals and service professionals (working mostly in hospitality and service industries). Secondly, interviews were conducted with representatives from national campaigns in nine different countries, including Australian local campaigning organisations.

- Dementia has impacts in the areas of: social, material, service provision, psychological, carer role, plus wider disparities (such as socio-economic status and age).

- Campaign priorities showed potentially complementary approaches being used by national and local level campaigners. Overlaps and differences in priority were also found, based on the voice perspectives.

- Six campaign priority areas were identified, including, awareness-raising, increasing understanding and interaction skills, normalising dementia, dignity/respect/rights, prevention methods, and health care system and services.

Irja Haapala-Biggs, Tara Quirke, Simon Biggs, Danijela Hlis, Tony Ramshaw and Ashley Carr