Puzzling truth behind our city's hidden epidemic
POURING coffee into her handbag and using toothpaste for soap - this is what it's like to have dementia.
Life can be a puzzling struggle for 65-year-old Christine Karanges but she's determined to live the best she can, no matter what the disease does to her.
She helps raise money for dementia charities and even spent four years writing a book about her experiences with dementia.
"I was diagnosed when I was 58," the mother of 10 says.
"I knew there was something wrong with me but the mental health clinic thought I was crazy.
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"I was losing myself, getting off at the wrong bus stop, trying to pay people at the shop when I'd already paid them, pouring coffee in my handbag, putting my keys on the bin.
"Once I even washed myself with toothpaste."
Ms Karanges is one of 413,000 Australians living with dementia.
NewsRegional analysis of Alzheimer's Australia data shows about 3176 Toowoomba residents have the disease, costing our region about $113 million a year
By 2056, there will be 9165 local residents with dementia and by that stage the fatal illness will cost our region about $325.8 million annually.
Dementia is an umbrella term for a collection of symptoms that are caused by disorders affecting the brain.
It is the second leading cause of death in our country.
Changing the way we live can reduce the impact of the disease
University of Canberra research shows if Australia can reduce the number of people with the disease by 5%, the country would save $120 billion by 2046.
"A whole-of-community approach to risk reduction, and better coordinated care, along with a boost to research, is going to be needed if we are to curb the rise in people living with dementia by 2056," UC National Centre for Social and Economic Modelling (NATSEM) Professor Laurie Brown said.
Alzheimer's Australia national CEO Maree McCabe said getting more Toowoomba residents to reassess their diet and exercise levels would help reduce the disease locally.
"Dementia has a significant impact on the economy and there are also significant personal and social impacts," Ms McCabe said.
"The main way to lower the cost is reduction and prevention.
"There is evidence that diet and exercise are important in reducing your risk of getting dementia.
"We know that if we can delay the onset of dementia by just five years there would be millions of people who would ... never get dementia."
OzCare Queensland provides services across regional, rural and metropolitan centres.
State co-ordinator Karen Constant said the State and Federal governments had made a commitment to funding the organisation's work until 2020.
Ms Constant said having more local resources and professionals to diagnose the disease earlier and having strong support systems in place were vital as our region's dementia numbers grew.
"It's a very complex disease to diagnose and to prevent," she said.
"Dementia starts to develop in the brain 20 years before symptoms become apparent.
"We can talk about prevention, challenging our brain, good sleep, exercise and diet but current research is looking at what interventions are best at what time throughout our life."
Local dementia professional Deborah McLachlan said a diagnosis of the disease did not mean lives would change overnight.
"There might be slight changes in personality or behaviour and they might become less motivated to do things that they have previously enjoyed," the Alzheimer's Australia development officer said.
"As the disease advances the changes become more profound."
Breaking down the barriers and reducing stigma
STIGMA is one of the hardest things to overcome for people with dementia and for their carers.
Misconceptions about the disease can have a major impact on how our community responds to people with the disease and negative attitudes can lead to residents with the illness avoiding vital socialisation activities.
"The best way to reduce stigma is to engage with people who have dementia and find out what things they like to participate in," Ms McLachlan said.
Ms McLachlan said the region had support services and education programs including activity groups and socialisation options.
She said caring for carers was once of the most important things our community could do for those with dementia.
"Encouraging family members to have a break and talk to others is very important," Ms McLachlan said.
Caring for a loved one with dementia is the hardest thing
NOT being able to hold a conversation with her dad is the hardest part of watching dementia take hold, Karen Bond says.
Ron Rendell, an electrical engineer in his younger years, is a smart and doting dad who loves a chat with his family.
But a series of silent strokes eight years ago left the now 84-year-old with vascular dementia.
While Ron's wife Ivy is his primary carer, his daughter Karen, Karen's husband Royce and her brother Aaron Rendell are always willing to lend a hand.
"The loss of the ability to communicate has been very hard - dad can express himself using hand and arm gestures but he cannot explain what he may want or need," Karen said.
"This was especially difficult as up until about a year ago he was alert mentally and able to drive safely.
"Dad was very distressed about the illness and its effect - he was in tears as he tried to explain to me once how he felt about it."
As the caring role becomes more difficult for 82-year-old Ivy, the family has had to make a difficult decision.
"We are currently in the process of putting dad into full time care in a dementia unit because he is requiring a much greater level of care than what mum can provide," Karen said.
"We know this is potentially quite confusing and distressing for him and fear it may cause another downhill slide in his condition."
Despite the hard times, Karen said it was vital for others to realise that people with dementia deserved to lead fulfilling lives.
"Although the effect of the disease is horrible, the people who have it are not," she said.
"They can be wonderful to be around and usually react quite positively to attention.
"They react well to visitors who can provide interest and stimulation to their day."
Christine faces everyday challenges with a little help from family
Despite to the challenges thrown up by dementia, Christine Karanges is still able to look after herself with a little help from one of her children and a part-time carer who helps her with housework and takes her shopping.
She said she was determined to avoid moving into a nursing home.
"I went into an aged care home when I was 60 but after 18 months I nearly did the unthinkable - I nearly took my own life," Ms Karanges said.
"Now I live in my own unit.
"I don't want to go back to the home but it's getting to the stage where my health issues mean I might have no choice."
Before then though, Ms Karanges says she's got her heart set on ticking a few things off her bucket list - going to Grafton's Jacaranda Festival and Toowoomba's Carnival of Flowers.
"I was always a keen gardener," she says.
Her book, Tears and Laughter of Dementia and Alzheimer's: The Christine Karanges Story, may be available from your library.
Dementia village offers a new way of living
AS our dementia rates increase over the coming 40 years, aged care providers are looking to find innovative ways to care for people with the disease.
Leading the way is the Sunshine Coast's NoosaCare, which plans to open Australia's first dementia village in the near future.
The concept will provide accommodation, support, stimulating environments and fun social options - including a café and a bar - for people at every stage of the disease.
The idea is to ensure residents can live safe fulfilling lives with plenty of stimulation so they can stay healthier longer.
Based around a similar village in Holland, the facility builds on NoosaCare's innovative 32-bed memory support unit that boasts its own beach, river, rainforest and rural settings.
"We want to provide our residents with the same sort of lifestyle they had while living in the community," NoosaCare manager Sandra Gilbert said.
"The aggression and medications have dropped dramatically since we opened the memory support unit - people who come to visit it say it's peaceful.
"You don't know who the staff are and who the residents are."
Plans for the village are before the Sunshine Coast Council.
"The memory support unit is quite ground-breaking and if I opened another tomorrow I could fill it tomorrow afternoon," Ms Gilbert said.
How toy dogs, cats and babies are changing lives
REALISTIC baby dolls and robotic pets that purr and bark are improving the lives of people with dementia.
Diversional therapist Jenny Hamilton discovered the benefits of "activity and care" products when she was supporting her own mother through the middle to late stages of dementia.
Ms Hamilton operates a business called Just a Memory Australia to supply her innovative products to aged care services across the country.
The cats will purr when petted and they even roll over for a belly rub.
The dog toy barks and has a heartbeat.
The toys "fall asleep" when they are not being handled.
Ms Hamilton said the toys helped people with dementia communicate with others and they stirred up long forgotten "deep emotions of nurturing".
She said the toys also reduced anxiety and distress and brought back positive memories.
"People with dementia don't seem to mind that they are not real," she said.
WHAT IS DEMENTIA?
- Dementia describes a collection of symptoms that are caused by disorders affecting the brain. It is not one specific disease.
- Dementia affects thinking, behaviour and the ability to perform everyday tasks. Brain function is affected enough to interfere with the person's normal social or working life.
- Most people with dementia are older, but it is not a normal part of aging.
- People in their 40s and 50s can also have dementia.
- The most common types of dementia are Alzheimer's disease, vascular dementia, Parkinson's disease, dementia with Lewy bodies, frontotemporal lobar degeneration, Huntington's disease, alcohol-related dementia and Creutzfeldt-Jakob disease.
- Most cases of dementia are not inherited.
- The early signs of dementia are very subtle and may include progressive and frequent memory loss, confusion, personality change, apathy and withdrawal, loss of ability to perform everyday tasks.
- There is no prevention or cure for most forms of dementia. However, some medications have been found to reduce some symptoms.
# This special report is part of a series of NewsRegional features examining the impact of dementia on sufferers, carers and our community.