NSW research presented to international conference
The results from an Australia-first study is being presented to the 25th International Conference of Alzheimer's Disease International in Greece this week.
The research, which looked at what comprises a quality support group, is the first comprehensive study of ongoing support groups for carers of people with dementia in Australia.
The research, conducted by Alzheimer's Australia NSW, not only found the huge benefits of support groups for participants, but also the enormous impact of grief and loss on the health and well-being of a carer of a person with dementia.
The research also found that the grieving process can begin for a carer of a person with dementia at the time of diagnosis, with some carers reporting that the grief and loss felt at this time was as much as, or even more than, the grief felt when the person with dementia dies.
The CEO of Alzheimer's Australia NSW, The Hon. John Watkins, said the Quality Support Groups Research Project is significant because it highlights what an undervalued and important resource good support groups are for carers of people with dementia.
"Because of the ageing population, dementia is a growing concern for the entire community, with more than 1.13 million Australians projected to have the illness by 2050," Mr Watkins said.
"That means more than 1 million families – husbands, wives, sons, daughters and friends – will be caring for a loved one with dementia and they need to be supported as much as the person living with the illness does.
"Caring for someone with dementia is a 24-hour-a-day, seven-day-a-week job. The unpredictable nature of the illness as it progresses, and the challenges that brings, can be very isolating, which is where the strength of a good support group comes in."
More than 350 people across NSW took part in the research project, including leaders of the groups and carers who had attended support groups.
The Quality Support Groups Research Project was conducted over five years and will be presented to the International Conference of Alzheimer's Disease International on Thursday, March 11 by report author and Alzheimer's Australia NSW research officer Jo-Ann Brown.
Ms Brown said those that took part in the research believed a major benefit of their support group was that it reduced that feeling of isolation that so many felt.
"The participants frequently said that support groups were so important, not least because they found others who knew exactly what they were going through," she said.
"That common understanding and that sense of belonging was cited time and again throughout the research as being invaluable for the support group members."
Leah Hardaker has been part of a support group for carers of people with dementia for the past 15 years and has found the experience life changing.
"We decided from the beginning that we would stay together as a support group for as long as any one of us was still caring for our partner. The pact was made because we realised how important it is to support one another.
"It's built friendships that are indescribable – we can laugh and cry together about anything. We're all travelling a journey together."
The Quality Support Groups Research Project has also identified best practice guidelines for support groups.
A workshop for dementia support group leaders that aims to improve and enhance their skills around grief and loss in support groups has been developed by Alzheimer's Australia NSW as a result of the research.
A copy of the report is available through the Alzheimer's Australia NSW online bookshop at www.alzheimers.org.au.