Development and evaluation of the Dementia-Friendly Communities Program
Dementia Australia
The Challenge
As of 2019, there are an estimated 447,115 people living with dementia in Australia. Without a major medical breakthrough, this is projected to increase to 1,076,129 by 2058[1]. Most people with dementia (about 70%) live in the community, many with support from family and friends[2]. While health and specialist services play an important role in meeting the needs of people with dementia, there is also a need to engage and inform the wider community to reduce stigma and increase social inclusion[3]. A dementia-friendly communities movement has emerged to address this need. The evidence base for dementia-friendly is still emerging – it is primarily descriptive and qualitative[4].
The Objective
ARTD worked with Dementia Australia to iteratively develop and evaluate the Department of Health-funded national Dementia-Friendly Communities Program, which included an online resource hub, a Dementia Friends awareness and education program and community grants.
Our Approach
We co-designed the evaluation with a Steering Committee and Dementia Advisory Group (made up of people with dementia and their carers). The overarching approach for the evaluation was developmental. We proposed this approach to:
- best support the iterative development of the Program
- enable us to adapt our methods to support iterative development and capture the
value of the evolving Program rather than judging against pre-determined outcomes - align with the values of dementia-friendly communities
- suit the nature of community development, which shares the characteristics of
innovation in complex, adaptive systems.
The developmental approach involved building the program team’s capacity for evaluation; facilitating regular data-based discussions about implications for design and delivery; and delivering more formal six-monthly progress reports, focusing on interpreting the evidence in context to support decision-making.
We were also informed by empowerment evaluation, when engaging with funded communities, and principles-focused evaluation when assessing the design process and the Program design.
We evolved our methods over time to best suit ongoing program development. For example, when engaging with funded communities, we realised that their stories could not only inform the evaluation, but support broader public engagement with the program – by helping other communities understand what ‘dementia friendly’ might mean in practice. So, we updated our case study approach to include the production of videos that capture stories of change over a 12-month period.
The Impact
The project supported the co-design of the initiative. Regular reporting supported data-informed decision-making to strengthen the ongoing development of the initiative at a national level, while site visits and webinars supported reflection and development of community-level initiatives. We were also able to amplify the program through video case studies (making communities’ key learnings available to other communities in a digestible format) shared through the DFC Hub.
SECTOR IMPLICATIONS
Grounded in principles of inclusion, self-determination and empowerment, community development initiatives are driven by community members. When you begin, it is not clear what it will look like, how it will be delivered, or even what outcomes will be achieved. Projects continuously evolve. Given this, there are significant concerns about traditional approaches to evaluation among community development theorists and practitioners[5].
Based on our learnings from applying developmental[6], empowerment [7] and principles-focused [8] evaluation to this community development initiative, we published a journal article –‘Evaluating Community Development’ in Social Work and Policy Studies: Social Justice, Practice and Theory – using the project as a best-practice case study. More specifically, the evaluation has supported dementia-friendly community development and evidence building by collating learnings from funded communities about success factors to support the development of future dementia-friendly communities. We presented our findings at the DFC Research Roundtable ahead of the NHMRC National Institute for Dementia Research Australian Dementia Forum in Hobart (13–14 June 2019), and our findings inform discussion at international conferences.
References:
[1] Dementia Australia. (2019). Dementia in Australia: Prevalence estimates 2019–2058.[2] Alzheimer’s Australia. (2014). Living with Dementia in The Community: Challenges and Opportunities. A Report of National Survey Findings Alzheimer’s Australia
[3] Alzheimer’s Disease International. (undated). Dementia Friendly Communities: Key principles
[4] Hebert, C., Scales, K. (2017). Dementia friendly initiatives: A state of the science review. Dementia, vol 0, pp1–38; Lin, S. (2017). “Dementia-friendly communities” and being dementia friendly in healthcare settings. Current Opinion in Psychiatry, 30(2), pp145–150.
[5] Craig, G. (2002). Towards the Measurement of Empowerment: The Evaluation of Community Development.Community Development, 33(1), pp. 124-146; Kenny, S. (2002). Evaluation and Community Development: Mantras, challenges and dilemmas. Paper presented at the 2002 Australasian Evaluation Society International Conference; Liket, K., Rey-Garcia, M., & Maas, K E. (2014). Why Aren’t Evaluations Working and What to Do About It: A Framework for Negotiating Meaningful Evaluation in Non-profits. American Journal of Evaluation, 35(2), pp. 171-18; Rawsthorne & Howard, 2011; Wadsworth Y. (1991). Everyday Evaluation on the Run. Action Research Issues Associated Inc. Melbourne.
[6] Patton, M.Q. (2007). Developmental Evaluation: Evaluation for the Way We Work. The Nonprofit Quarterly, pp. 28-33.
[7] Fetterman, D., Kaftarian, S.J., & Wandersman, A. (2015). Empowerment evaluation: Knowledge and Tools for Self-assessment, Evaluation Capacity Building, and Accountability, Second Edition. SAGE Publications Inc., USA; Fetterman, D. (2017). Transformative Empowerment Evaluation and Freirean Pedagogy: Alignment with an Emancipatory Tradition. New Directions for Evaluation (155): 111–126.
[8] Patton, M.Q. (2017). Principles-Focused Evaluation: The GUIDE. Guilford Publications, USA.
[9] Department of Social Services. 2012. https://www.dss.gov.au/our-responsibilities/disability- and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with- disabilities-and-their-families-in-australia
