Eroding the stigma of dementia and fighting ageism will be top of the list when the Fraternity Club hosts the 14th Annual Illawarra Shoalhaven Dementia Public Forum on Wednesday, September 17.
The forum includes presentations from Dementia Australia, Department of Health (federal), Disability and Ageing, and Childhood Dementia Initiatives. The University of Wollongong and the local health district will provide information for patients, carers and community in the dementia support space.
Organiser Val Fell said targeting the stigma around the condition was primary.
"People tend to look down on people with dementia,'' she said. ''I say you don't look down on anybody unless you're giving them a hand up.
"People don't understand that a lot of people with dementia are not suffering because they don't realise what's going on around them in many cases. But I've known people with a diagnosis of dementia who've gone on to write books. They've gone on to do PhDs... they’re still around and they haven't been diagnosed with immediate death. They can still live meaningful lives."
Val had the idea for the forum in 2011 after hearing dementia advocate Sue Pieters-Hawke speak on raising awareness and reducing the stigma.
"It started with our first forum in 2012 when Sue Pieters-Hawke was the primary speaker, and that was a novelty. We had about 150 people there. It’s grown over the years – the one before Covid hit the fan and we had 400. This year we are anticipating approximately 300 people to come."
From 2012, Val has organised the forum annually to raise community awareness, reduce stigma and provide information on aged care. This year’s event will include an exhibition of artworks created by individuals in the early stages of dementia.
Attendees will hear from a panel of carers who will share their experiences and an interview with a person who lives with dementia today. The forum includes an expo of providers, academics, researchers and technology spread over 28 tables, as more than 30 organisations participate to help people plan for future care.
“This year we’ve added something different.” Val says. ''There are quite a number of children with dementia, who have been treated for other sorts of things, and now it’s realised as a form of dementia. So there will be someone speaking about that.''
Attendance is free and lunch is included. The afternoon session will focus on the role of allied health in geriatric care, promoting strategies for “living better, living well, living longer”, says Val. This session will feature experts led by Dr Clair Langford from Bulli Hospital and include Laura Handley (a diversional therapist), a dietician, an occupational therapist and a speech pathologist.
"We cover all different aspects of dementia. But we also include aged care because as people get older, with or without dementia, they want to know what's going to happen when they get old."
Within the allied health section, the forum will educate on modifiable risks for dementia, supporting individuals to stay active, eat well and stay connected.
"There's two aspects of prevention in aged care ... watch out for your bone density, keep as mobile as you can and also keep as connected as possible with the community. Don't become socially isolated – you use it or lose it," Val says.
"Physiotherapy is fantastic. I was seriously ill in hospital last year... I have physio twice a week now and my mobility is a lot better. It's been increased by 25 percent.”
Val’s husband passed away in 2013 with dementia. Having seen other family members struggle with Alzheimer's, Val says she learned to recognise the signs.
“That’s why I do what I’m doing. The first [experience with dementia in family] was before the original Aged Care Act in 1997. So I knew what it was like prior to that – where it was a biomedical model. People didn't have any identity, really – they were just dementia patients."
Legislation around aged care and dementia has changed since John Howard's 1997 act, which Val says “put the providers in charge of expending the funds and telling people what they needed." The Aged Care Act 2024 seeks to centre the rights, dignity and choices of participants.
“The new act is written around the person, the participant and not about the providers. Participants like myself are in charge of what's happening to them,” Val says.
“The new aged care act is a very good move forward. It's still not perfect... It'll take a little bit of time to get embedded into the system... but it's much, much better than it was before.”
To reduce system pressures and wait times, the government plans to release an additional 80,000 home care packages over a year. Following a recent Senate inquiry, the government has been pressured to accelerate this plan, promising to release 20,000 packages immediately and another 20,000 before Christmas.
“You can hand out a package. But where's the workforce coming from?" says Val.
"We need to start planning now... apart from increasing the number of beds, which is essential, we need to decrease the demand for beds by having more services in the community and increase the support at home."
This year’s theme for Dementia Action Week (September 15-21) is ‘'nobody can do it alone'’. Dementia Australia reports that 93 percent of carers say their role is emotionally demanding, and more than half felt socially isolated.
"We need to have providers who make sure that when they employ people, they employ the right people – people who are empathetic… empathy means sympathy and imagination combined."
"People have to realise that working in health care can be very rewarding. The people who actually want to be in aged care are doing a fantastic job. They should be applauded for that, and they should be rewarded for that.
"There is a ladder. There is a framework where people can start at the bottom and finish at the top. It can be a career."
To register for the forum, which will run from 10am to 3pm, go to Eventbrite or call Val on 0488 114 555 or Lynda on 0417 468 977