Alongside the demographic aging of the population, there is a corresponding increase in the number of people living with dementia. International estimates are 46 million, with this number expected to rise to 138 million by 2050 (ADI, 2016). The increasing prevalence of dementia will demand a shift in both the social and the physical environments within which we live. Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Public spaces and civic buildings are not often designed in ways which are supportive of people with dementia participating in civic life. ‘Dementia friendly’ communities aim to address this by empowering people with dementia and increasing their social inclusion. They also aim to create more supportive physical environment to enable participation.
The ‘Dementia Friendly Kiama’ project (led by Dr Lyn Phillipson) and colleagues from UOW (Brennan-Horley, Fleming, Cridland, Hall and Hasan) is a partnership between the University of Wollongong (UOW) Global Challenges Program, the Kiama Municipal Council, the Kiama community and Dementia Australia. The project utilises a Community-based Participatory Action Research framework to inform the development, implementation and evaluation of a multicomponent dementia-friendly community intervention. Research in Kiama has included interviews and mapping exercises with people with dementia and their carers, community and business surveys, piloting a Dementia-friendly business toolkit and the development of an environmental assessment tool for use in the auditing of public buildings. Formative research activities guided the Action Plan of a local Dementia Alliance and Dementia Advisory Group.
Evaluative research activities monitor inputs, outputs, impacts and outcomes of the project. Key achievements include:
- The empowerment of people living with dementia – including opportunities for civic participation, social inclusion and peer support through the Southern Dementia Advisory Group and other project activities
- Improved community understanding and increased positive attitudes with regard to the capabilities of people living with dementia. This has been achieved via education sessions (with over 1000 attendances) and the development of new information resources e.g. the ‘Dementia Illawarra’ website (www.dementiaIS.com)
- Tools to improve the physical environment –including the Dementia Friendly Communities Environmental Assessment Tool (DFC-EAT) and the establishment of the ‘OurPlace’ Kiama mapping tool (http://ourplacemap.com/)
- Public recognition and acclaim - the project received an Excellence in Community Partnerships Award at the National Disability Awards (2016) and was recognised at the 7th Global Conference for the Alliance of Healthy Cities (2016) by the World Health Organisation
- The model and tools have informed Dementia Australia’s $3.9 million ‘National Dementia Friendly Communities Strategy’ (funded by the Department of Health, 2017-2021)
- The project has also had an impact at UOW. Programs such as the ‘Dementia Enabling University Strategy’ has increased opportunities for students from all five faculties to study the impact of dementia and consider their role in the creation of a dementia friendly society. The Global Challenges project has also continued to support new interdisciplinary projects that address the societal challenges of dementia
3. Good health and well-being
10. Reduced inequalities
11. Sustainable cities and communities
Details of the Impact
Responding to an identified need
Kiama is an example of what is known in Australia as a ‘sea-change’ town. It is popular with retirees as a place to live out their senior years due to its attractive coastal location, village atmosphere and relative access to cities (Wollongong and Sydney) via a railway corridor. The larger Kiama State Electorate has a population of 69,000 people. Due to the ageing demographic profile of the region, the number of people living with dementia in the State Electorate is projected to increase from the current 1200 to almost 4000 by 2050. Kiama Council was already working towards becoming an aged-friendly city and had a strong history of community engagement. However, it had identified that it had experienced barriers to understanding the specific needs of residents with dementia and how it could better support their active aging.
Participatory processes and governance
The ‘Dementia Friendly Kiama’ utilised a Community-based Participatory Action Research framework to inform the development, implementation and evaluation of a multicomponent dementia-friendly community intervention. Kiama Council was already working towards becoming an aged-friendly city and had a strong history of community engagement. This provided a strong foundation around which to engage community members and groups to support the aims of the project. In the early stages of the project, a Dementia Advisory Group (consisting of people living with dementia and their carer partners) and a Dementia Alliance (including members of the Advisory Group, representatives from partner and other relevant organisations, and interested individuals) were formed. These groups played a governance role and also supported the development, implementation and evaluation of all stages of the project.
Education and awareness raising activities over an 18-month period included information and education sessions delivered to over 1000 community members. People living with dementia and their carers participated in all activities sharing their experiences in the media and via presentations and panel discussions at educational events. They were also involved in direct consultation with community organisations, businesses and services including the Chamber of Commerce, service clubs and general practitioners.
The project attracted over 30 instances of media attention including radio, TV and print at local, Sydney and national level in which local people living with dementia frequently featured. Four websites featured information about the project, including the project website (www.dementiais.com), which promoted local information, resources and services for people with dementia, a local calendar of events and over 35 news blogs specific to the project. A Dementia Friendly Kiama brand was developed and printed material (including flyers, posters, brochures and newsletters) were widely distributed.
Research and collaboration methods required adaptation to promote the inclusion of people with dementia. This had an impact on where and when activities occurred, the environment in which they occurred and the amount of information presented and the time people were given to prepare in advance.
Activities in the physical environment included the initial development of the Dementia Friendly Communities Environmental Assessment Tool (DFC-EAT). The DFC-EAT was utilised by the Kiama Community College and the Kiama Library to inform environmental changes to improve accessibility in these public buildings for people with dementia. The ‘OurPlace’ Kiama web interface was also established (http://ourplacemap.com/). The online maps are used to crowd source and share information about dementia-friendly places and ideas for action. These were reviewed at Dementia Alliance meetings.
The development of these tools appears a critical feature of the growing and broader impact of this project. Subsequent validation of DFC-EAT has received national and international recognition and is available for use via www.enablingenvironments.com.au and via mobile applications. ‘Our Place’ maps have also supported the development of another four dementia friendly communities across Australia since their introduction in 2015.
- People living with dementia and their carers in the Kiama area (1200)
- Community members, groups and local business (1000)
- Regional organisations (30)
Approach to Impact
Summary of the approaches to impact
The university had specific expertise with regards to social research with people with dementia (Phillipson), design and dementia (Fleming), human geography (Brennan-Horley), social marketing (Phillipson and Hall), psychology (Cridland) and information management (Hasan). The university undertook formative research with people living with dementia in the Kiama area and their carer partners, as well as members of the Kiama community.
Research activities included interviews and mapping exercises with people with dementia and their carers, community and business surveys, piloting a Dementia friendly business toolkit and the development of an environmental assessment tool for auditing of public buildings.
Approach to Impact
Co-design and Collaborative Implementation
The Dementia Advisory Group and the Dementia Alliance reviewed the formative research and developed an action plan. The University researchers were part of the broader Alliance who conducted this review and developed the aims for the action plan. Aims included increasing community awareness about dementia and local services, promoting understanding of the lived experience of dementia and reducing the stigma of dementia. It also included goals to improve the physical environment with regards to signage, way finding, pedestrian crossings and bus stop identification. Importantly the University participated as an ongoing member of the Dementia Alliance.
Awareness raising and educational activities were co-designed and co-facilitated by members of the Dementia Advisory Group. This was based on their desire for local people to understand their lives and share their awareness - which has also been found in other research. The decision to support the active involvement of local people with dementia in media and educational events was also based on a previous study of dementia stigma in Australia which found that having contact with a person with dementia was associated with lower levels of personal avoidance of the condition.