Abstract
Universities can promote social impact by developing a dementia literate workforce. The Dementia Enabling University Strategy utilised a knowledge translation framework in an Australian university to inspire and support academics to engage students and consider how their skills and knowledge could contribute to the creation of more supportive environments for people with dementia. Dementia Enabling University Strategy ran across eight disciplines: law, media, social sciences, public health, engineering, business, marketing and psychology and was successful in engaging university academics and students. However, a longer term strategy is needed to embed ‘dementia’ as core business to the university impact agenda.
Background
To meet the objectives of the World Health Organisation Global Action Plan: A Public Health Response in 2017 (WHO, 2017), there is a need for a more diverse cohort of professionals to take action in response to the global challenges of dementia. This is true not only for health professionals working ‘on the ground’ with people with dementia, but also for those involved in the overarching regulatory, legal and service frameworks such as policy makers and corporate governance, not least of all by reason of recent government attention to dementia policy development.
The imperative to support a more dementia literate population is highlighted through the movement to support the creation of dementia friendly communities (Prince et al., 2014). A dementia-friendly community has been defined as ‘a place or culture in which people with dementia and their care partners and families are empowered, supported and included in society, understand their rights and recognise their full potential’ (Alzheimer’s Disease International, 2016).
International efforts to create more dementia friendly communities have focused downstream, promoting research and efforts to remedy the challenges of living with dementia at the coalface of individual communities. However, there is also a pressing need to engage professionals from diverse disciplines and workforces who provide services within these communities to ensure they can understand and respond to the challenges faced by people with dementia and their families. Consistent with a social and rights-based approach to dementia, health professionals, engineers, designers, town planners, public policy makers, lawyers, accountants, bank managers and business people all have a role to play in the creation of dementia friendly communities.
The role for universities in the creation of dementia friendly communities
Due to the diverse range of disciplines fostered within tertiary education environments, universities are well placed to respond to the global challenge of dementia and promote the development of a more dementia literate workforce. Typically, universities have responded by increasing the availability of programmes aimed at health and social care students. Programs aim to improve the leadership skills, judgement and awareness of health and social care professionals. Some programmes also provide health students with the opportunity to work in aged care environments and learn through ‘real world’ experience about effective care for people with dementia (e.g. Robinson et al., 2013).
At the postgraduate level, university courses with dementia content predominantly target health and social care professionals wanting a specialist qualification in dementia care. In Australia, specific courses for health professionals, promoted by universities or supported by government programmes, have gained some prominence, particularly in providing short courses, online programmes and continuing practicing development (e.g. Dementia Training Australia). Some UK-based universities have embarked on becoming ‘dementia friendly’. Such initiatives encourage individual staff and students to become ‘dementia friends’ (Alzheimer’s Society, 2013, Mitchell et al., 2017); and/or make changes to the physical environment so campuses are more accessible and enabling to people with dementia. One recent, successful programme at a UK-based university engaged people with dementia as tutors in a foundation degree in dementia studies (Russell, 2016).
However, despite these initiatives, the dementia related education and research currently undertaken by universities is limited and predominantly targets medical and care professionals. In a review of the international literature, we found no examples of universities building professional or research capacity in dementia across the diverse disciplines of their institutions.
The Dementia Enabling University Strategy (DEUS)
The DEUS at an Australian university (University of Wollongong, New South Wales) aimed to inspire faculties and schools to provide undergraduates from a diverse range of disciplines with greater opportunities to apply their skills and knowledge to the creation of ‘Dementia Friendly’ communities. The goal of the project was to support the ground-up creation of a ‘Dementia Enabling University’. The pilot project supported a part time project officer, two local dementia ‘opinion leaders’ at the university, and a dementia advocate who all worked on behalf of a dementia ‘knowledge broker’. Project staff engaged and supported interested academics across the university’s five faculties to consider how they might each use their unique discipline skills to create environments, technologies, philosophies, pedagogies, curricula, learning resources, research and career pathways to address the interests and needs of people with dementia. The plan was to create opportunities for academics to build dementia content into existing subjects and inspire students to consider how they might use their knowledge and skills to enable people with dementia to lead full lives. The term ‘dementia enabling’ was used for this project, rather than dementia friendly, as the goal is that students understand inclusion and access are about rights, not just being friendly.
The project placed the unique perspective and involvement of people with dementia at the centre of the strategy to ensure an inclusive approach. The dementia advocate (Swaffer), who was employed as a consultant within the project, contributed to the development and inclusion of dementia-specific content, and facilitated relationships between people with dementia, academic experts, lecturers and students.
Method
The DEUS goals were to: Liaise with willing academics to determine the potential of incorporating dementia content into university courses. Build dementia capacity through programme inclusion of dementia content. Build dementia awareness and skills.
DEUS was guided by a Knowledge Translation (KT) framework (Phillipson, Fleming, & Reis, 2014), informed by a literature review and consultation with academics working in the area of dementia education (Phillipson, Goodenough, Reis, & Fleming, 2016). The KT framework (p. 13) defines ‘Knowledge Translation’ as: ‘The process of engaging, for mutual benefit, with target audiences to generate, produce, acquire, apply or make accessible the “knowledge” (information, skills, capabilities, technologies or other) required to improve the quality of care and support provided to people with dementia and their caregivers’. The domains of activity that are essential within the KT framework include: Knowledge generation – the gathering or production of evidence to assist in the tailoring or judicious selection of strategies to achieve the objectives of a given project. For example: a literature review, needs analysis, or other formative research. Knowledge products – the creation of educational resources used for teaching and training activities to achieve the objectives. For example: curricula, training manuals and resources, online resources, multimedia products, and journal articles. Knowledge access – making knowledge (information) and knowledge products accessible to target audiences. For example: lectures, conferences, websites or other marketing strategies. Knowledge capacity – building the skills and capacity of the target audience to apply knowledge/evidence in aspects of their working practice or environment. For example: clinical workshops, professional development short courses or work-based placements. Knowledge relationships – identifying and building strategic relationships with key stakeholders to assist with knowledge generation, production, access or building knowledge capacity.
Ethical approval for the project was granted by the University Human Research Ethics Committee.
Findings
DEUS activities focused on the domains of ‘knowledge generation’; the creation of ‘knowledge products’; support for building of ‘knowledge relationships’; and activities to create ‘knowledge access’.
Knowledge generation
‘Knowledge generation’ activities included literature reviews and key stakeholder consultation to gather evidence to produce knowledge about what was required to engage academics in developing and including dementia related content.
Interviews were conducted in December 2015 with n = 14 academics in nine schools across the university’s five faculties. University academics (heads of school, course or subject co-ordinators) were approached via email to participate. Discussions explored the perceived importance of dementia within their subject area and their readiness to incorporate dementia related content.
Interviews were conducted by a dementia research academic (Phillipson) and a person with dementia (Swaffer), who was employed as a consultant on the project. The inclusion of a person with dementia ensured the project benefitted from lived experience and also provided an opportunity for academics to meet someone living with the condition, and explore directly with them what their discipline may have to offer in the area. Academics described the involvement of a research academic with a strong profile in dementia as a significant factor which influenced their commitment to the project. Contact and speaking with Swaffer who is also an international dementia rights advocate was also reported to be very motivating.
Overall, academics demonstrated a willingness and readiness for the inclusion of dementia within undergraduate curricula. A common theme was the timeliness of this project, as many faculties were undergoing course review and/or accreditation renewal. Opportunities to include dementia within courses predominantly focused around content (e.g., guest lectures and case studies), assessment-based (e.g., student design of questionnaires), project-based (e.g., conducting building audits), and research-based inclusion (e.g., designated funds or scholarship opportunities).
Barriers such as limitations in time, resources and dementia knowledge were addressed through the provision of financial and human resources to support the development of new cross-disciplinary digital resources, particularly amongst disciplines and academics not as knowledgeable about dementia. Academics were also supported by dementia experts to assist with informing the content of teaching materials, and presentation of content (e.g., guest lectures).
Knowledge products
DEUS project staff worked with interested academics to identify how and where dementia-specific content could fit within existing courses. Academics submitted proposals outlining plans and costing estimates for the development of dementia related teaching resources to be included in a variety of undergraduate and postgraduate courses. Approved proposals were then supported, through DEUS funding, to create the resources required to facilitate implementation of identified activities in two sessions of 2016. All faculties/schools that submitted proposals were supported through the strategy budget.
Small grants (of between $AUD3 and 8K) were provided to seven disciplines to assist with the inclusion of dementia content within courses: law, media, social sciences, public health, engineering, business and psychology. Dementia content was embedded within courses in the form of: guest lectures; project-based internship or placement opportunities; assessment tasks; and tutorial content. Funding assisted academics to develop teaching resources and content, some of which were incorporated within subjects. Specialised resources used video case studies, highlighting the experience of people with dementia and their families, and/or the experiences of professionals working in the area.
Knowledge relationships
Activities in this phase aimed to identify and build strategic relationships with key stakeholders to assist in the generation of knowledge, product development, increasing access or developing capacity (Phillipson et al., 2014). DEUS project staff engaged academics through ongoing consultation and support with frequent meetings and email or phone contact.
Relationships also developed between participating DEUS academics. For example, two cross-faculty academics were involved in the development of student projects for the University’s Engineering Design Studios.
DEUS academics engaged with other university staff and high-level opinion leaders, including executive and research strategy leaders, to cultivate partnerships and additional support from the university community. Contact with senior executive (e.g. Heads of Schools, Faculty Deans, Research Leaders) generated higher level organisational support for the strategy. However, the pilot failed to gain the endorsement of a longer-term commitment by the university to become ‘dementia enabling’.
Knowledge access
The main access strategies were facilitated through the curriculum development activities (discussed above). The strategy facilitated a series of open guest lectures and networking events featuring dementia experts from a wide range of disciplines to promote the interaction of students and staff across disciplines. Further, efforts were undertaken to ensure appropriate media coverage of the DEUS strategy. Planned media activities included a media release, a news article in the Australian Journal of Dementia Care and a ‘brand’ logo developed to raise DEUS recognition and awareness.
Discussion
The global challenges of dementia represent a significant opportunity for universities to demonstrate their impact and contribute to the creation of more dementia-friendly communities. Initial findings from DEUS suggest that including dementia-specific content within courses not traditionally focused on this topic is highly achievable within a short timeframe.
In this project, we witnessed numerous circumstances in which academics experienced a positive emotional response to the ‘dementia related’ impact agenda which allowed them to experience what Chubb, Watermeyer, and Wakeling (2017) have termed a synergy between ‘personal, moral and disciplinary identities’ (p. 1). Once emotionally ‘on board’ with the agenda, consultations with academics identified a high need for basic dementia knowledge including: demographics, impact (global mortality and morbidity), lived experience, morbidity and mortality, and key facts and issues relating to living with dementia amongst both academics and students. DEUS raised awareness through individual networks and guest lectures. The approach in DEUS contrasts with other dementia friendly university strategies that targeted staff and students to become ‘dementia friends’ (Alzheimer’s Society, 2013) to raise dementia awareness on university campuses. This latter type of activity could be considered in future DEUS activities to complement a more targeted network approach.
Building the capacity for dementia teaching and research across disciplines required the support of new learning not just for students but also for academic staff. Supporting the inclusion of dementia content involved developing student resources, as well as providing staff with sufficient incentives to deliver content ‘above and beyond’ their usual realm of expertise. To achieve this, ‘knowledge generation’ activities were funded across projects allowing academics to employ research assistants to conduct discipline-specific literature reviews. The knowledge generated was utilised by the academics to build their own knowledge as well as prepare student teaching resources. DEUS project staff acting as knowledge brokers were critical at many levels. Academics benefitted from discussion with DEUS staff to source high quality dementia resources and connect with experts and/or people with dementia to help develop resources.
In the pilot phase, individual relationships between the DEUS academics were sufficient to support the development and incorporation of some dementia content and activities into existing courses. However, DEUS demonstrates that seeding relationships between ‘dementia’ and ‘non-dementia’ academics leads to other unanticipated outcomes.
This has shown itself in other ‘flow-on’ effects including the momentum for new research projects, policy submissions and community partnerships. Another example includes the involvement of two project members with a key research group within the Engineering Faculty to develop and build a ‘dementia-enabling’ home (Alzheimer’s Australia, 2017).
The building of ‘communities of practice’ to support knowledge translation as an outcome of dementia education programmes is helpful in producing longer term practice change (Phillipson et al., 2016) and should also be considered as part of any future ‘dementia enabling’ university networks. Our reflections from the DEUS experience suggest the need to support interdisciplinary academic communities (with experts in dementia and other disciplines) to build teaching and research capacity focused on developing student placements and projects. An investment in sustainable relationships with people with dementia and their care partners is also important to ensure future work continues to be inspired by, and informed by, their lived experience.
In this pilot project, the ‘Knowledge Relationships’ were insufficient to achieve a ‘whole of university’ approach. Whilst very supportive of the DEUS engagement with individual academics and schools, the university has not taken steps at a policy level to include ‘dementia’ as core to its impact agenda. Subsequent phases of the project will therefore focus on mechanisms for evaluating longer term changes which occur as part of DEUS and will continue with efforts to gain higher level support for the activities.
Conclusion
The DEUS pilot project successfully enabled the inclusion of dementia content across seven diverse schools and gained the support of key academic stakeholders in a short timeframe and with minimal resources. It holds great potential as a model for other universities seeking to engage the hearts and minds of a diverse range of academics to contribute to the longer term goal of the creation of more aged and dementia friendly communities. However, additional strategies will be required to embed ‘dementia’ as core business to how universities respond to the growing mandate to promote social impact.
Footnotes
Acknowledgements
The authors thank Dr Tom Goldfinch (previously Faculty of Engineering and Information Sciences, University of Wollongong) for his initial role in project establishment; Fallon Forbes (Dementia Training Australia, University of Wollongong) for her support in implementing the various faculty-based projects.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was carried out with support from a grant from the NSW/ACT Dementia Training Study Centre (Funded by the Department of Health, Commonwealth Government of Australia).