Dr Caroline Grogan’s important work on Dementia Friendly Communities (DFCs) has been highlighted in the January edition of the Australian Journal of Dementia Care. Her research addresses a critical aspect of supporting people living with dementia in shaping an effective DFC: the inclusion, support, and voice for people living with dementia and their carers.
The definition of a DFC, provided by Alzheimer’s Disease International, emphasises the importance of “a place or culture in which people with dementia and their carers are empowered, supported and included in society, understand their rights, and recognise their full potential”. Dr Grogan’s work calls attention to the gap between the global growth of DFCs and the more limited implementation of dementia-inclusive practices in Australia.
A particularly thought-provoking aspect of her research is the question: Is it truly dementia-friendly if people living with dementia are excluded? This underlines the necessity of engaging individuals with dementia directly in shaping and participating in these initiatives.
Dr Grogan provides practical insights to help achieve active and valuable engagement within DFCs.
Five tips to start a DFC
Invitation:
Actively invite people living with dementia and family carers in initiatives. For example, put up flyers or advertise in the local newspaper, community or church noticeboard, call local respite centres and share with them to invite family carers and people living with dementia, or attend a local memory café.
Create a subgroup:
People living with dementia often prefer and are more comfortable in smaller groups, so creating a smaller group that meets informally, such as once a month, can act as a bridge to the larger community. The smaller group can build trust, rapport and supportive relationships, which can then help guide the larger DFC committee’s actions and priorities.
Creating a dementia café (informal regular catch-up group) can be a practical way of meeting people living with dementia and providing an environment to build social support and community connections.
Leadership and Sharing of Power:
- Collectively make decisions with people living with dementia instead of for them. For example, call people before the meeting to ask for their input on the agenda topics and/or any feedback from prior meetings.
- Support people living with dementia and family carers in advocacy and leadership positions.
- Be flexible in responding to how involved people living with dementia wish to be. Offer personalised support for every person living with dementia, for example agendas printed in large print.
- Support someone who wants to be more engaged and active in initiatives. For example, someone can assist with minutes and help prompt meetings.
Facilitation and timing of meetings:
- Call and remind people about a meeting.
- The facilitator needs to be empathetic, clear and communicate effectively.
- Limit the number of agenda items and allow time before the meeting for input in various ways, such as phone, email and text.
- Allow for more time to slow things down to include people living with dementia authentically.
Location:
- Select an accessible location that is easy to get to and has appropriate surrounding and internal signage
- A consistent location allows for a routine to be established for families and people living with dementia.
- Facilitate transport for people living with dementia to attend meetings.
This work is a vital step toward ensuring that all communities are welcoming and empowering spaces for people living with dementia and their families. Further findings have been published in Journal of Aging Studies.
Grogan, C., Stafford, L., Miller, E., & Burton, J. (2024). Dementia Friendly Communities: Micro-processes and practices observed locally in Queensland Australia. Journal of aging studies, 69, 101235. https://doi.org/10.1016/j.jaging.2024.101235
Learn more about the Older People, Aged Care, and Dementia Research Program at the Wesley Research Institute. This program is dedicated to enhancing the quality of life, mental health, and physical well-being of older adults across various care settings, from community and respite care to residential facilities.