A new program aimed at reducing stigma associated with dementia is being developed by ANU researcher and recipient of the 2016 Alzheimer’s Australia Hazel Hawke Research Grant in Dementia Care, Dr Sarang Kim.
Social stigma has a devastating impact on the lives of people with dementia and can often lead to social exclusion, discrimination, disempowerment and is even suggested to affect a person’s tendency to seek help or a diagnosis.
Results from a national survey conducted by Dr Kim and her research team show the general public hold negative views and express a desire for social avoidance of people living with dementia.
It is hoped the Dementia Stigma Reduction Program (DESeRvE) led by Dr Kim will enhance understanding and awareness of dementia and discover effective ways to reduce dementia-related stigma.
The program will use focus groups to gather information about what the general public would like to learn from people with dementia and what people with dementia and their carers would like the general public to know about living with the disease.
Dr Kim said education and having contact with people living with the condition are believed to be the most effective ways to reduce stigma.
“After the focus groups we will create a series of short video clips featuring people with dementia and carers answering frequently asked questions drawn from the focus groups. These videos will be used for the general public to have virtual contact with people with dementia and carers,” Dr Kim said.
Dr Kim said she hopes her study sparks an interest in further studies in the area of dementia-related stigma.
“Despite stigma being identified as the number one concern for people living with dementia and their carers, research investigating dementia-related stigma is still lacking,” Dr Kim said.
“Dementia is a neurodegenerative disease, however, due to its effects on memory, judgement and behaviour, it is perceived as a mental illness and is associated with the fear and misunderstanding commonly linked to other mental illnesses.
“Furthermore, dementia is often mistakenly assumed to be a natural part of ageing that only affects older adults.
“By increasing the public’s understanding and awareness of dementia and subsequently reducing stigma, it is envisaged that people will be more likely to visit GPs or other health professionals as soon as early symptoms of dementia are noticed.”
But... what if the person (my Mum) who has been diagnosed with Alzheimer's Dementia (by a Psycho-geriatrician) and she has a GP (for over 21 years) who is not willing to discuss the diagnosis with her. Lots of 'dancing around the issue' by using the words 'memory problems'. I think Mum's GP is a bit afraid of talking to my Mum!!! Mum has not got anything 'in writing' nor 'in conversation' that talks about her Dementia! Stigma in the word Dementia! My Mum was a nurse and she nursed people with Dementia in their homes. These people were probably at a much later stage in the journey with the 'dreaded' Dementia... Feeling so very sad that my Mum is not included in her diagnosis :( Makes very hard to talk about future planning and strategies that might help her in everyday life...