Australia - Dementia Friendly Communities

In 2014, Alzheimer’s Australia carried out a national survey of 188 people living with dementia to discover how they felt stigma and social isolation could be reduced. The findings were published in the report Living with dementia in the community: challenges and opportunities. The survey found the following six objectives to be priorities: increased awareness and understanding of dementia; access to social activities; supports to stay at home; appropriate health care; transport; and improvements to the physical environment. In response to these findings, Alzheimer’s Australia launched a campaign to create a dementia friendly nation. A campaign video featuring people with dementia highlighted the small actions people could take to make their community more dementia friendly. Two Dementia Friendly Toolkits were also developed, one for businesses and one for members of the community. Progress towards dementia friendly communities has been assisted by some philanthropic and government (national, state and local) support to seed pilot initiatives and develop resources.

Originally established in 2012 by a local MP and the Regional Manager for Alzheimer’s Australia New South Wales, Port Macquarie Dementia Friendly Community has been developed and driven by a Steering Committee since its inception. The Steering Committee is made up of a local MP (member of parliament), people with dementia, carers and representatives from the local council, service providers, Alzheimer’s Australia New South Wales (NSW), church groups, local businesses, the chamber of commerce and transport and education departments. Chosen as one of Alzheimer’s Australia’s dementia friendly community pilot sites, a Dementia Community Support Alliance, made up of local people with dementia and carers has been formed to act as an advocacy action group to develop strategic goals and strategies. Eleven businesses have completed Action Plans for becoming more dementia friendly which have been approved by the Alliance. A volunteer social engagement programme, Dementia Mates, was established in partnership with Catholic Care of the Aged to link volunteers and people with dementia with the aim of reducing isolation and encouraging greater social interaction. A Dementia 4 Kids programme has also been developed by the NSW Dementia Collaborative Research Centre to work with schools to raise awareness in younger Australians about dementia.   

A qualitative research exercise was carried out in 2014 by the University of Wollongong in conjunction with Alzheimer’s Australia and Kiama Municipal Council to discover what it is like for people with dementia and their carers to live in the township of Kiama. An audit tool was developed to assess how dementia friendly places and spaces were, and local community members and businesses were asked about their knowledge of and attitudes towards dementia. Two local groups formed to establish a Kiama Dementia Action Plan: the Dementia Alliance, made up of people with dementia, carers, the local council, and service providers; and the Dementia Advisory Group, formed solely of people with dementia and carers. Information sessions for local groups and the public have taken place, the Kiama Community College is working towards becoming dementia friendly, local newspapers have published positive stories about local people with dementia, and the project is showcased online. Kiama is seeing improved community awareness about dementia and training has been provided to help community groups such as the local Probus club, choir, music and knitting groups support people living with dementia to remain involved.

In 2015, the University of Wollongong launched a research website, ourplacemap.com, which enabled local residents in Kiama and Darwin to pinpoint places that they found to be dementia friendly. The interactive site, the first of its kind, also allowed users to map places or spaces they feel could be improved to support access for people with dementia and their carers.

The country town of Beechworth in rural Victoria has taken the dementia friendly concept on board, establishing strong local government support and community leadership. Support from a local MP has provided leadership to drive systemic change and advocate not only in the community but also in parliament. A local dementia alliance was formed to guide activities, which include awareness training delivered in partnership with Alzheimer’s Australia Victoria, a carer support network and involvement in the design and layout of the town’s new library. During Dementia Awareness Week in 2015, a photo journal exhibition was organised featuring pictures of local people with dementia alongside their stories, which were displayed in ten local businesses. A children’s story time session to promote intergenerational activity and a community sharing feast are among other activities that have been organised.

Picture: Changing Minds Beechworth

Alzheimer’s Australia Victoria is also working with the City Council in Manningham to develop a work plan incorporating dementia friendly concepts. The project was launched by the Manningham Mayor in December 2015. This work will also inform the development of a toolkit to assist local governments and councils to embed dementia friendly principles in their strategic planning.

In South Australia, the Holdfast Bay dementia friendly community pilot project has seen strong support and commitment from the local council to become dementia friendly and incorporate dementia friendly concepts in strategic planning. A dementia alliance working group was established and includes people living with dementia and carers. Other members of the group represent a range of community services, including retail, schools and business owners. The Alzheimer’s Consumer Alliance SA reviewed the action plans for five organisations committed to working towards becoming dementia friendly. Collaborating with the City of Holdfast Bay Council an interactive reminiscence exhibition was launched in 2015 called Hidden Places, Hidden Lives, Hidden Memories and was held for six weeks. The exhibition included suitcases of memorabilia with different themes. Feedback from the community was overwhelmingly positive. Six monthly community forums were also held to engage the community and raise dementia awareness.

Aged care provider, Life Care, created the Side by Side programme in South Australia with support from DIY store Bunnings Warehouse. The project is a community-based buddy programme to support people with younger onset dementia to engage within the workforce. Activities included serving customers, assembling display stock, plant care and assisting with a school and holiday DIY programme. The programme provided training to staff and helps raise community awareness of dementia. An evaluation of the Side by Side programme revealed a number of positive outcomes for participants and their family members, including improved self-esteem, an increase in mental alertness and an increased interest in life more generally.

The Darwin dementia friendly community pilot project has seen strong support and commitment from local government, council, hospital and shopping centres to become dementia friendly. The office of 25 Members of the Legislative Assembly (MLAs) and four Senators offices in the community have been identified as dementia friendly spaces for people living with dementia to use if they are confused. Feedback from MLAs has been very positive and the dementia friendly concept embraced with enthusiasm. The community is working to create an inclusive and supported environment for people diagnosed with dementia through social engagement activities. A Dementia Friendly Garden programme was established to create a sensory stimulating and relaxing garden for people living with dementia that visit the Joy Anderson Centre. The programme also engaged people with younger onset dementia to contribute to the building and maintenance of the garden through volunteering roles. A Dementia Friendly Choir was also formed which includes five members living with dementia.

In Queensland, the Bribie Island dementia friendly community pilot project established two advisory groups, the ‘local dementia alliance’ of local community stakeholders and the ‘dementia action group’ for people with dementia and their carers. The advisory groups identified the following focus areas: community safety and awareness, creating inclusive activities for people with dementia, reducing stigma and creating partnership and supporting local business to become dementia friendly. The Bribie Island Police Department, dementia support group and a fitness studio have become local champions for raising dementia awareness and improving social engagement opportunities.

 In 2013 Alzheimer’s Australia WA (Western Australia) received a WA State Government Social Innovations Grant to commence working towards a dementia friendly Western Australia. The project started with an extensive community consultation programme across this very large State. Community cafes were held in metropolitan and regional areas inviting people living with dementia to come together to talk about what helped them, what their challenges were and ideas for improvements. Over 300 people participated in the cafes and a report highlighting the key issues for people living with dementia in WA was published.

The project has also worked with three pilot local government regions working on dementia friendly initiatives as well as working closely with a number of libraries, art galleries and museums to develop programmes that are inclusive for people living with dementia.

The development of a dementia aware friends project that trains volunteers to raise awareness and understanding of dementia in the community has been successful. A dementia advocates programme is also in place to support people living with dementia to be a part of the work of Alzheimer’s Australia WA in providing the person living with dementia’s view on education, media work and policy.

One of the key areas of work of the project in Western Australia has been on the development of tools to assist the improvement of physical environments. The Dementia Enabling Environments website has a section on designing public buildings as well as a dementia friendly communities environmental audit tool developed in collaboration with the University of Wollongong, NSW. This work builds on an earlier initiative made possible by the Alzheimer’s Australia National Quality Dementia Care Initiative with the support of the JO and JR Wicking Trust. This supported the translation of dementia friendly environment research findings into practical information and guidance for architects, designers, landscapers, aged care staff, people with dementia and carers.

A dementia friendly community in Tasmania emerged when Gordon Nutt and his wife and carer, Ginger, moved to the village of Cygnet after Gordon was diagnosed with dementia. During their years in Cygnet, the town embraced Gordon, looking out for, including and protecting him. Teachers welcomed him into their classrooms and shopkeepers allowed him to tidy their counters and shelves when he would visit. Gordon could walk safely through the town and always end up in a place where people accepted him. Alzheimer’s Australia has aimed to embrace the needs of those from culturally and linguistically diverse communities within dementia care initiatives, and to develop resources that help communities build their own capacity to improve social inclusion.

The CALD (Culturally and Linguistically Diverse) Carers Peer Support Groups programme, developed by Alzheimer’s Australia Victoria, aimed to promote social engagement and access to services for nine culturally and linguistically diverse communities from Croatian, Japanese, Korean, Lithuanian, Mauritian, Serbian, Turkish, Ukrainian, and Spanish-speaking backgrounds. The programme included printed materials in the appropriate languages as well as tailored activities and information sessions. Outcomes from the project included reduced levels of isolation among participants as well as increased social engagement, self-confidence, motivation, health and quality of life.

The growth of the Men’s Sheds movement in recent years has been dramatic and they are now mainstream. The Every Bloke Needs a Shed pilot programme in 2011-2013 was an initiative of Alzheimer’s Australia New South Wales and funded by Department of Family and Community Services. The programme aimed to encourage and support men living in the community with early stage dementia to access, participate and enjoy the friendship, and activities available in their local Men’s Shed. Overcoming stigma and misunderstanding about dementia was a large part of achieving this, so in 2014 a manual was developed based on the information from the pilot project that demonstrates how Men’s Sheds can be approached, educated and adapted to suit the needs of people with dementia. Each Men’s Shed is independently run for the benefit of its members, and is not a service delivery centre.

Community cafés have been established in a number of areas around Australia and have shown to provide a major and positive impact on the quality of life of people living with dementia and their family, by reducing the isolation frequently experienced by carers and people living with dementia. They have been adapted to suit people of culturally and linguistically diverse backgrounds as well as those with younger onset dementia . A toolkit to support communities in setting up their own dementia cafés has been developed and will be available nationally in 2016. The toolkit will include a manual and tools to assist communities on how to establish and run a community café.

Tweed Heads, on the far north coast of New South Wales, Australia has joined the nationwide movement towards becoming a dementia-friendly community. The project, launched in August 2016 under the auspices of Alzheimer’s Australia NSW, has a steering committee which includes people living with dementia and their carers and a part-time project officer. Several more have joined a Dementia Action Group to work with organisations and businesses to become dementia-friendly. To date (June 2017), two businesses in the beachside town of Kingscliff have the dementia-friendly tick of approval. The Kingscliff Beach Bowls Club and Maddie & Lil Boutique both have an action plan to make changes to their business, which will make them more dementia-friendly over the next 12 months. More organisations are in the process of attaining dementia-friendly status including service organisations, such as Community Transport and Meals on Wheels, businesses including a shopping mall and real estate office, and several local churches. Organisations have been keen to take up the offer of free education and information about dementia for staff and volunteers.

The North-West New South Wales town of Narrabri is working with key stakeholders to create a community culture and environment that is supportive of and accessible by people living with dementia. A steering community consisting of interested members of the community, local business and health services leads Narrabri’s dementia-friendly community project. The committee which includes representatives from the Chamber of Commerce, Rotary, Hunter New England Health, The Whiddon group, Narrabri Shire Council and HealthWISE, has been meeting since 2016. The committee has submitted a community action plan and is working with Alzheimer’s Australia staff and their resources to become a dementia-friendly community.

Two community events will be held in September to engage with business and community groups. The events will include a presentation from Alzheimer’s Australia as well as access to toolkits to evaluate current environments and practices and work toward becoming more dementia-friendly. Education for businesses and frontline staff when communicating with customers with dementia forms a key part of this project. The committee is also hoping to engage with the Council’s Disability Inclusion Plan to inform future planning and capital works projects such as paving, lighting, signage and amenities – so they too can be more dementia-friendly.

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