NEW data from Alzheimer's Australia predicts a big growth in the next 40 years in the number of people living with dementia in NSW.
The data shows by 2050, 272,000 people will be living with the disease, up from 109,000 today.
Alzheimer's Australia NSW chief executive John Watkins said while the bulk of the problem would be seen in Australia's cities, rural Australia would be hit hard.
Mr Watkins said dementia sufferers in rural areas faced a raft of challenges that were unique from their urban counterparts.
"We know many towns in rural Australia are older than the national average and we know often they don't have the services or choices that are available in the cities and that's why the burden of dementia falls the heaviest outside of the cities," Mr Watkins said.
he said in certain parts of rural Australia there was a lack of general practice (GP) services, a real delay in specialist services being available, a shortage of nursing homes, and respite care was generally unavailable.
"Unless we get specific, flexible funding to address the needs of rural Australia we're not going to be in a good position heading into the future."
A year ago Alzheimer's Australia released a discussion paper on the above obstacles and recommended action, but Mr Watkins said little progress had been made.
"There's been a couple of good things that have happened since but overall there hasn't been much change in the delivery of services," he said.
Mr Watkins said progress had been made in raising awareness of the importance of dementia-friendly communities, the rollout of a small team of dementia onset workers, and a sizeable commitment had been made by the federal government for dementia research.
But in the same year, federal funding for a dementia support package which was available to residential care facilities was pulled.
"This program was torn away at the last budget and that has impacted both rural and urban facilities.
"Aside from this there hasn't been any further loss but no further commitment either."
Mr Watkins said the time to invest in support services to unpaid carers had never been more important.
"There are always going to members of the community that provide unpaid care - most of us accept that responsibility as part of loving somebody - but we are going to need them to do that more and more in the future," he said.
"It means that person with dementia will stay at home longer so it makes sense economically, plus we owe that commitment to them."
According to Carers Australia, unpaid or informal carers provide 1.32 billion hours of care each year and the replacement costs of this care is more than $40 billion a year.
Mr Watkins said along with education and in-home help, a key part of the support they required was respite services.
Bathurst Seymour Centre manager Terisa Ashworth couldn't agree more.
The centre provides day care and respite for carers of elderly and disabled people, including people with dementia, in the Bathurst community.
Clients of the centre are provided a hot meal and social interaction while their carers are able to take time out for themselves.
"Respite is so important, not only for the person who is receiving the care, but also the carer," Ms Ashworth said.
"Carers need to have time to do their own things - it might be shopping or going to appointments - they need time to refresh and recharge their batteries so they can maintain themselves and their relationship with the person they are caring for."
Care at home a tough task
When Brewongle farmer Jeff Green realised his wife Pat was going downhill with dementia, he knew he couldn’t be in two places at once – but he had to.
With dementia beds few and far between in Bathurst, he made the decision to keep caring for her at home until something came up.
Already busy running his 32 hectares, Mr Green darted between the paddocks and the house to care for his wife for seven years.
“I could have taken her to Rylstone in the first week she was assessed to have dementia but that’s a two hour trip each way, and to put somebody away like that and only visit once a week – I wouldn’t do it,” Mr Green said.
Caring for her by himself was difficult at times, he said.
“The biggest time I wanted support was when I was trying to get her into the bath of the night – she would end up just about pulling my hair out and I would have to ring my daughter
-in-law to come and help me.”
A couple of times a week, Mr Green would take Pat into Bathurst to the Seymour Centre to give him a couple of hours of respite.
He said the ladies there became his rock and provided him a wealth of advice and emotional support.
Pat is now at St Catherine’s Residential Aged Care Bathurst and after a few unsettled months, is doing well.
Mr Green said it was a huge decision.
“I thought I could box on but I was chatting to a friend and he said ‘don’t try and be a martyr’.
“I would say the same to anybody that comes across this situation.
“Get as much help as you can – that’s the most important thing, otherwise you will start to go down the same road.”