Kevin and Maree Dunne at their Cooma home. Maree has dementia. 20 February 2015. Photo: Andrew Meares Photo: Andrew Meares
The first sign of trouble is when Alice, a renowned linguistics professor, is addressing an audience of academics.
Three or so sentences into her delivery she dries up, staring around the auditorium. It’s long enough for everyone to notice. She tries to pass it off with a joke.
“I knew I shouldn’t have had that champagne,” Alice, played by Julianne Moore, says at the start of the film Still Alice.
Julianne Moore in Still Alice. Photo: Supplied
But it’s more awkward when she twice introduces herself to her son’s new girlfriend who’s arrived for Christmas lunch.
Her neurologist says a scan suggests results that are consistent with early onset Alzheimer’s. She’s 50, fit, smart and otherwise healthy. But suddenly her life is turned upside down.
Many people think memory loss, dementia or Alzheimer’s is the preserve of octogenarians. Think again.
While Still Alice is fiction, the character of Alice Howland is based on harsh reality.
It is estimated that there are now more than 25,000 Australians living with younger onset dementia. Without a medical breakthrough, this figure is set to increase to 36,800 by 2050. Nobody is claiming a medical breakthrough is just around the corner, although new research reported last week suggests the heart could be the culprit inflicting trauma on the brain, eventually resulting in loss of function.
Alzheimer’s Australia NSW has just published its NSW Election Manifesto in advance of the March 28 poll. It wants the major political parties to commit to a range of initiatives to enhance the quality of life of sufferers and their carers.
The report and its predictions don’t make for easy reading.
In NSW there are 112,000 people with dementia but, with the population ageing, the figure is expected to grow to more than 128,000 by 2020. By the year 2050 the map of Sydney and its surrounds will be transformed, showing a vast swath of western suburbs having higher incidence of the disease. Altogether 272,000 will be affected. The figures are largely based on the geography of where the ageing population live.
John Watkins, chief executive of Alzheimer’s Australia NSW, says, as an example, Camden at the moment has a pretty young population but over the next 40 years it will age considerably. By comparison Bathurst, with an existing older population, would not increase as much over the same period.
“The number of people living in the Camden area with dementia, which is quite low today, will increase very dramatically as opposed to other parts of the state,” he says.
“We are ageing quickly as a nation and with that ageing comes an increased risk of dementia and that will increasingly happen in the western suburbs of Sydney. The reality is that wherever you live, it doesn’t matter what electorate you are in, dementia is going to get worse and worse at a higher rate in certain areas than others.”
What they are asking for in the manifesto doesn’t amount to a lot of money – about $2.5 million. That includes $2 million for a dementia centre in western Sydney as well as $400,000 for three-year funding for an officer to support Aboriginal communities, where the incidence of dementia is about threefold the rest of the population.
Replacement and fit-out of a “memory van”, a mobile education resource that travels statewide to raise awareness on the importance of brain health and dementia risk reduction, is another $100,000.
“All politicians are sympathetic to the cause because they know family or people in the community who have got this condition. The problem is that most of the parties realise to do anything different, and it is huge, it will cost a lot of money and they sort of bunch it in with the health system,” Mr Watkins says.
“There are very specific needs where you can make a difference. We just need elected officials to direct their treasuries to fund particular programs that will have a real impact on the lives of people living with dementia.”
NSW Health Minister Jillian Skinner told Fairfax Media she has personal experience with Alzheimer’s through both family and friends.
“The impact of the disease on loved ones is something I understand, which is why I value the support provided by organisations such as Alzheimer’s Australia NSW,” she said.
“I’m also encouraged by the research being undertaken to learn more about Alzheimer’s and related diseases. The proposals put forward by Alzheimer’s Australia NSW in its Election Manifesto are currently under consideration.
“I’m pleased to confirm I have approved $100,000 in funding for the replacement and fit-out of the Alzheimer’s Australia NSW Memory Van. It provides an important and valued service for patients and their loved ones.”
However, Opposition spokesman Walt Secord says: “Sadly in NSW, the Liberals-Nationals have not adequately planned or responded to our state’s ageing population and its associated impending health care challenges and the number of older Australians with dementia.
“Tony Abbott has slashed payments to aged care providers for elderly people with severe symptoms of dementia by $16 a day. Mike Baird has failed to stand up to Tony Abbott over dementia and health cuts.
But there are further challenges for anyone who faces the prospect of looking after a loved one with younger onset dementia.
The national president of Alzheimer’s Australia, Graeme Samuel AC told a Senate Standing Committee on Community Affairs last Thursday that for decades consumers had been calling for a program that provides individualised, proactive, person-centred support.
“This approach is particularly important for people with younger onset dementia, who in the past have been shuffled between the disability and aged care systems,” he says.
He questioned the adequacy of existing residential care arrangements available for young people with severe physical, mental or intellectual disabilities.
“Their calls for help were answered with the implementation of the government-funded Younger Onset Dementia Key Worker Program which has so far provided thousands of Australians with health professionals to assist them with appropriate services and supports,” Samuel says.
“Unfortunately, it now seems like the government is planning to dissolve this important program into the mainstream services of the National Disability Insurance Scheme. This is an alarming development for Australians who have received a diagnosis of younger onset dementia as it means they will be left to fend for themselves in the NDIS system where there is no guarantee their needs can or will be met.”
Early placement into residential care has been identified by Alzheimer’s Australia as a major concern and regarded as an inappropriate place for supporting a person often more physically fit and with different interests and social needs to an older sufferer, he said.
“The unfortunate reality is without programs such as the Key Worker Program, people with younger onset dementia and their families will face a constant struggle to access age-appropriate support,” he says.
Lifetime of loving sustains dementia sufferer’s carer – but it’s tough going
Kevin Dunne first noticed something was wrong with his wife Maree when she was in her late 50s.
The couple had been teenage sweethearts who married in their early 20s and went on to have five children. Just when they should have been starting to relax into their next stage of life together, things started to change.
Maree would be driving around their home town of Cooma where they’d lived for 30 years and she would get lost.
Kevin Dunne was 22 when he married Maree aged 20 having met her at a youth group when she was sixteen. He first noticed things weren’t right when she was aged 58 .
She would be driving around their home town of Cooma where they’d lived for 30 years and she would get lost.
“She was a very good cook and I would notice there would be things missing, vegetables missing or she would repeat the meal twice in a row,” Dunne says. “She would tell you a story and then tell you the same story shortly after. She’d make excuses for herself.”
In about 2007 Maree has some brain scans which confirmedconfirmated she had early onset dementia. She was prescribed a drug called Aricept that slows the process of the decline and that gave some improvement for a while.
But the disease brought some radical changes to their lives.
“We lost a daughter in 2010 to cancer and as part of the dementia Maree never cried with the loss. She didn’t appear to grieve. She didn’t show outward signs of grieving but there could have been grieving internally. I wouldn’t like to make a judgment call on that.”
As well as dealing with the grief over his daughter, Dunne is also coping with the daily grief of caring for someone with dementia.
“This grieving is really different. It’s ongoing and the person that you knew is not there any more and you are grieving that loss but the person is still physically there. This morning I cried for a couple of minutes. I was thinking about Maree and thinking what it would be like to being back to normal again.
“I think we are lucky that we have always loved each other. I don’t know how you could do what I am doing if you didn’t love each other. I get physically exhausted but there is also great joy in looking after her.”
Dunne is very happy with the care Maree receives. A program called Each-D, the Extended Aged Care at Home Dementia package✓, provides a carer for 15 hours a week for $66 a week and she attends a day care centre five days for $400 a month.
Dunne, 69, is still working part-time as a teacher.
“The one reason I am still working is it keeps me sane,” he says. “It’s contact with people. It’s isolating. Some people don’t visit because they don’t know what to say.”
He says the dementia shows itself in many different ways.
“She moves things. She’ll pick the bananas up from the lounge and put them in the bedroom. She’ll get the pillows and put them in the kitchen sink and put the water on. You have got to have a really good sense of humour.
“She likes musicals. She likes Mama Mia. You could show her the same one and it wouldn’t matter.”
His youngest daughter, Suzanne, who teaches drama, has obtained some Arts Council funding to make a play about dementia.
It’s called Bananas in the Bedside Table.