Richard Fleming, Lyn Phillipson, Kate Swaffer and Kara Cappetta report on an ambitious pilot project to develop Australia’s first ‘dementia enabling university’, at the University of Wollongong, NSW, where the aim is to inspire and equip students from a range of disciplines to address the growing challenge of dementia
Universities worldwide have typically responded to the growing challenges posed by the increasing number of people with dementia through the education of health and social care graduates or through health and medical research. However, there is no doubt that the attention given to dementia-related subjects at the undergraduate level does not match the scale of the issue. Findings from a review of the academic and grey literature demonstrate that the majority of dementia education and training programs occur at the professional level within hospital settings, with content typically focused on bio-medically based information and targeted at direct care staff and nurses (Cappetta & Phillipson 2016).
Several universities internationally, particularly within the UK, have extended this focus and implemented the idea of a ‘dementia-friendly university’ in an effort to better address dementia awareness and skills. These initiatives tend to focus on encouraging staff and students to become ‘dementia friends’ (Plymouth University, University of Huddersfield, and the University of Salford) and to make changes to the physical environment so campuses are more accessible and enabling to people with dementia (the University of Salford and the University of the West of Scotland). In Australia specific courses focused on health professionals and promoted by universities or supported by government programs (like Australia’s Dementia Training Study Centres (DTSCs) have gained some prominence and there have been major developments with online programs such as the University of Tasmania’s Understanding Dementia Massive Open Online Course (MOOC), and the DTSCs’ Dementia Education Online.
Now, in an Australian first, the NSW/ACT DTSC has been funded by the Department of Health to explore a ‘whole of university’ approach through the Dementia Enabling University Strategy (DEUS). This pilot project at the University of Wollongong (UOW) involves working with interested academics from a diverse range of disciplines to create more opportunities for students to acquire the knowledge and inspiration they need to develop better ways to enable people with dementia to lead full lives.
DEUS aims to promote opportunities for UOW students across the faculties to gain a perspective on how their discipline might address the growing challenge of dementia; and to acquire the skills and capacity to create environments, technologies, philosophies, pedagogies, curricula, research and career pathways that will address the interests of people with dementia. The project is also placing the unique perspective and involvement of people with dementia at the centre of the strategy to ensure a truly consumer-based approach.
Professor Richard Fleming, Director of the NSW/ACT DTSC, explains: “There is growing international awareness of the importance of creating dementia-friendly communities that support people with dementia, but very little work has been done on the role universities can play in this. We have undertaken this project to see if we can demonstrate the contribution universities can make. Our goal is to alert UOW staff and students to the opportunity to contribute to the creation of new forms of infrastructure, treatment, care, service delivery, design and communication that will foster an inclusive community: a community where the university is acknowledged as having a leading role in meeting one of the major challenges of the 21st century”.
To date, DEUS has engaged with UOW staff to determine how and where dementia-specific content may fit within existing courses, with interested faculties and schools developing plans for dementia-related topics and projects to be included in a variety of undergraduate courses. Subjects include: law, media, social sciences, public health, engineering, and psychology. For these, dementia content will take the form of guest lectures, project-based and internship or placement opportunities, assessment tasks and tutorial content. Funding has assisted staff to develop teaching resources and content, some of which was incorporated within subjects from May this year.
Examples of how dementia content will be embedded within courses (particularly in non-traditional dementia disciplines) include:
- A guest lecture for media and journalism students, entitled: Perceptions of dementia within the media, presented by a person with dementia (Kate Swaffer, Chair, CEO and co-founder of Dementia Alliance International) followed by a related tutorial activity, and potential for final year students to take part in an internship with the Dementia Alliance International, a non-profit group of people with dementia from around the world who seek to represent, support, and educate others living with the disease.
- Content development for a new elective within the Bachelor of Laws, which will explore the relationship between the complex, and at times contradictory, roles of law in the lives of people with disability. Dementia will be addressed through discussion of specific topics related to law and dementia including legal capacity, elder abuse and legal regulation of residential aged care facilities.
- Content development for a module on Leadership and Dementia which will form the major component of a second year subject within the Bachelor of Social Sciences Dean’s Scholar program entitled ‘Leadership, Scholarship and Social Change’, whereby scholars will be challenged to reflect on their leadership potential, portfolio of scholarly competencies, leadership and scholarship learning goals, and their role as future social scientists in a changing world where leadership is required.
- Engineering students will also take part in dementia-related project and solution-based design placements with funding to establish ‘design studios’ to improve the knowledge and skills of future engineers so they can design appropriately for people with dementia. Outcomes for the design studios also include generating innovation in the design of buildings and artefacts to be used by people with dementia, as well as raising awareness of the requirement for design to reflect the needs of people with dementia.
Involving people with dementia
The voice of people with dementia is represented on the project by Kate Swaffer, who is also a member of the World Dementia Council, a person living with younger onset dementia and a current UOW PhD candidate. Kate is contributing to the development and inclusion of dementia-specific content, and facilitating relationships between people with dementia, academic experts, lecturers and students.
“Involving people with dementia in this project is a major step forward in reducing the isolation, stigma and discrimination, which are still the salient features of the lived experience of dementia,” Kate said. “As a partner in the project, and now a PhD student at the University of Wollongong, I hope this project takes dementia beyond the medicalisation we currently face, to a new level of biosocial, enabling pathway of care and support as we engage and educate students in dementia generally, and to see how their own disciplines can ensure that independence, autonomy and the human rights and disability rights of people with dementia are met.”
As part of the Dementia Enabling University Strategy at UOW, the DTSC will also support a series of open guest lectures featuring dementia experts from a wide range of disciplines, and networking events to promote the interaction of students and staff across disciplines.
It is hoped that through the inclusion of dementia-specific content in more undergraduate disciplines, UOW students will not only demonstrate greater awareness of the problems faced by people with dementia, but will also have the motivation to consider the challenges faced by people with dementia from their unique discipline perspective.
Professor Richard Fleming is Director of the NSW/ACT Dementia Training Study Centre, and Executive Editor of the Australian Journal of Dementia Care. Dr Lyn Phillipson is an NHMRC-ARC Dementia Fellow at the Australian Health Services Research Institute at the University of Wollongong; Kate Swaffer is Chair, CEO and co-founder of Dementia Alliance International; Kara Cappetta is a Research Officer at the University of Wollongong. To follow up on this article contact Dr Phillipson at: firstname.lastname@example.org