Over 400,000 Australians are living with dementia and about two thirds of those are living in the community.
More than 1.5 million people in Australia are involved in caring for someone living with dementia. Some of these work in aged care facilities but many more are spouses or family members. The time required and the financial and emotional cost for loved ones caring for someone with dementia is very high.
So when we think of caring for people living with dementia, it is also important to think about caring for the carers. That’s where Daylesford’s Dementia Carers Support Group comes in.
Our local Dementia Carers Support Group started in 2016. It was set up by Gabe Kirby, then working for Hepburn Health, with input from Hepburn Shire and Dementia Australia. Dora Mansbridge, Manager of Social Support and Treehouse Programs at Central Highlands Rural Health, coordinates the Support Group now.
Each month we meet over a cuppa to talk about our experience as carers, to listen to each other and to help each other find resources, information, support and relief. We learn a lot from each other because, while each person with dementia is unique, there are many similarities in the challenges faced by them and by carers. We also benefit from expertise provided by Dora from CHRH and by Dementia Australia staff and counsellors who regularly attend our gatherings.
Three current group members offer these reflections on how the support group has helped them:
New participants Alana* and her daughter Louise* are both carers of their husband/father. Louise said: “Although we have only recently commenced going to the dementia carers group meetings, we both have found it already to be a real godsend. As a wife and daughter caring for husband/father we have gained not only advice and knowledge about caring for someone suffering with this disease, but from the group discussions we’ve also been given great support. It is an emotional time on so many levels and we are very thankful to meet regularly with other carers who are simply understanding, caring and welcoming. We all have a story to tell and its very humbling to be heard.”
Joan* cared for her husband Bert* who had dementia for the final years of his life. Since his death, Joan continues to attend the group. She appreciates ongoing support through her grief, and is happy to help others with her experience. Joan valued the amount of information available from the group and also learning where she could go for help.
Joan said: “The group helped me so much when Bert was with me, it was just so good to be able to sit down with a coffee and sometimes cake, for a couple of hours and talk to people that understood what was happening in my life. Everyone was and is so understanding, with a tissue ready if needed, and it was many times.”
Darren* is the partner of Ron* who is living with dementia. Darren has developed camaraderie and friendship among the carers because of the similar problems faced by them. Darren said: “The group allows sharing stories of common issues we face caring for our loved ones. It helps us learn how to navigate the complex web of services and support provided by official channels.”
As well as acquiring tips and strategies from fellow carers on how to deal with these problems, Darren said the group provides “an avenue to vent our frustrations, and gain mental support from fellow carers and facilitators.” We sometimes cry or laugh a bit too.
Dementia is the second highest cause of death in Australia and the highest cause of death in women. About 8% of Australians over the age of 65 live with dementia. Although many people with dementia continue to live in the community, people with more severe dementia or people without family and community support (about one third of people with dementia) live in aged care facilities.
September 18 to 24 is Dementia Awareness Week and Thursday, September 21, is International Alzheimer’s Day. The Dementia Action Week theme is ‘Act Now for a Dementia-Friendly Future’ – because communities that take action to become dementia-friendly have less fear and a greater understanding of dementia.
Dementia friendly communities support people living with dementia to live well in their communities for longer with a higher quality of life. And carers are often the most critical factor in enabling people with dementia to remain in the community.
If you have a family member or friend with dementia or memory loss, please join our Dementia Carers Support Group. We meet on the first Tuesday of every month, from 10.30am to noon, at a café in Daylesford. For details please contact Dora on 0417 360 381.
If this story has prompted any questions or concerns, please call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au. An interpreter service is available. The National Dementia Helpline is funded by the Australian Government.
*Names have been changed to preserve privacy.
Margaret Hodge is a local resident and was a community representative on the steering committee of the Dementia Carers Support Group. She is still involved with the group as a volunteer facilitator.