By Yasmin Noone
The majority of Australians mistakenly believe the symptoms of dementia are part and parcel with getting old, according to Newspoll survey results released yesterday.
A Newspoll survey of Australian adults aged 18-64 years has found that nearly one in five respondents thought the symptoms of the disease were associated with ageing, not the terminal illness that is dementia.
This widely-held perception was also spread across the front page of the Sydney Morning Herald in late-June when the broadsheet publication reported comments made by mental health specialist, Dr David Spektor, who referred to Alzheimer’s disease as “a normal part of ageing”.
Glenn Rees, CEO of Alzheimer’s Australia said Dr Spektor’s comments surrounding a diagnosis in people aged in their 80s and 90s is as concerning as suggesting that people aged in their 80s and 90s should not be diagnosed with cancer or heart disease.
“Dementia is not a normal part of ageing, it is a degenerative disease,” Mr Rees said.
“Everyone, regardless of their age, has a right to know if they have a serious medical condition.”
The Newspoll, commissioned by Eli Lilly in consultation with Alzheimer’s Australia, also found that around 10 per cent of people aged 19-34 had never heard of Alzheimer’s disease, the most common form of dementia.
President of Alzheimer’s Australia, Ita Buttrose, fronted the National Press Club yesterday, saying the survey results highlight the lack of awareness of and stigma associated with dementia in the Australian community.
She explained how stigma often leads to delays in seeking medical help and social exclusion, not only for people with dementia but also their carers and families.
Ms Butrose commented on her own past experience of the disease, recalling how she cared for her father who lived with dementia.
“Instead of supporting people at a time of great difficulty and challenge, the instinct for many in our community is to turn their back and walk away.” Ms Buttrose said.
“There are the personal memories of my dad doing things that were quite out of character, both amusing and sad.
“But the enduring memories for me are those of how cruel we are as a society to people with dementia and as a consequence to their families and those who love them.
“A diagnosis of dementia brings with it social isolation and a sense of shame for the individual.”
The Newspoll found that almost 80 per cent of people surveyed believe their personal circumstances would not allow them to care for a family member diagnosed with Alzheimer’s disease on a daily basis.
This was in stark contrast with almost half of all respondents who said they would “expect” a family member to look after them if they received an Alzheimer’s diagnosis.
However, more than 25 per cent of the group who currently felt unable to care for a loved one with the disease said they would try to change their personal circumstances to enable them to provide care, if a family member were to receive an Alzheimer’s diagnosis.
Over 1,200 Australian adults participated in the survey, between 31 May and 3 June this year, by answering questions about topics relating to Alzheimer’s disease.
The results of a pilot study on the stigma associated with dementia, also released yesterday by Centre of Health Initiatives at University of Wollongong, support the Newspoll and show that negative attitudes towards people with dementia do prevail in Australia.
Of the 616 people who participated in the pilot study, over half indicated that people with dementia can not be expected to have a meaningful conversation.
The study’s recently published paper, Exploring dementia and stigma beliefs – a pilot study of Australian adults aged 40 to 65 years, also reveals that the majority of people with dementia feel stigmatized because of their condition.
The research also found that over a third said that people with dementia could be irritating and one in 10 indicated that they would avoid spending time with a person with dementia, and some people have a “personal desire” to avoid people with dementia.
Yet, according to the paper, a significant segment of the research sample held positive views about people with dementia.
“These views included recognition of their value, their capacity to participate, and their desire to live with some quality of life,” the report reads.
“Identification of such views in this sample may not be surprising due to the high number of carers and people who ‘know someone with dementia’.”
A high proportion of participants with dementia also reported fear (or expectation) of direct discrimination in the health and employment sectors.
“This indicates a need for research to understand/document the experiences of people with dementia (and their carers) in relation to discrimination within each of these sectors, and what type of interventions may be required to address dementia related stigma in these sectors.”
The paper also said that many GPs are not currently well-equipped to act as the first point of call for people with dementia in seek of help, with issues identified in relation to diagnosis and dissatisfaction with support that can be offered
“Our findings reinforce the pressing need for GPs to receive more effective education and training to be better able to address the needs of people seeking help with memory loss and the symptoms of dementia.”
Ms Buttrose said change would only come through a greater awareness and understanding of dementia and a national approach to promoting awareness.
“The Living Longer. Living Better package set the scene for significant reform in aged care and a new determination to tackle dementia both as a health and aged care issue,” Ms Buttrose said.
“We want to get the message across that as a society we can beat dementia in the same way we have tackled HIV/Aids, cancer and heart disease.
“The government has yet to address the serious inequity in research funding. Dementia research is grossly underfunded in relation to health and care costs, disability burden and prevalence compared to other chronic diseases.”
Alzheimer’s Australia, the charity for people with dementia and their families and carers, estimate that 280,000 people have dementia in Australia. This number is projected to double by 2030 and reach almost one million by 2050.
The advocacy group has therefore called for an increase of $200 million in government investment for research, which would be equivalent of one per cent of the total cost of dementia care provision.
“And what could be more positive than the next stage of our campaign to invest in research and start working now towards a world without dementia,” she said.
“It is an ambitious goal, but one which I know is worth fighting for.”
National Dementia Helpline: 1800 100 500
This is not surprising information for anyone that studies in the field. Frontline Care Solutions has an excellent series of online education courses that can be used to educate the general public and the families that need information to support their loved ones. the problem is the cost for the individual and this should be supplied by the governemnt.
We would advocate strongly for more money to fund more health professional to take up courses and training in research. Their is plenty of money available to do the research , however their is no money or time for a person to devote their professional growth to the process.
more nurses should be funded to take time out of their normal careers to persue research careers in this topic. the waves are getting bigger and the tsunami is coming