The serious lack of knowledge in the Hawkesbury community about dementia, and the hidden suffering endured by full-time carers of sufferers, were two aspects of the problem discussed at a recent Richmond forum.
Now those involved want the community to step up and volunteer to be part of the solution.
Organised by Dr Ravi of Richmond’s Macquarie Towns Specialist Centre, the forum at Richmond Golf Club on November 15 brought together several medical experts, a dementia coach and Macquarie MP Susan Templeman as well as a host of those affected in the community.
“What came out of the individual stories was incredibly moving, the struggle the carers faced, and the guilt they felt of moving someone into a home,” Ms Templeman said. “These individuals want to do the caring but they need the right support.”
On Wednesday, November 22 the Gazette office was the venue for a meeting arising out of the forum, including Ms Templeman, Councillor Danielle Wheeler, Dr Ravi, two Dementia Advisory Service representatives, and dementia coach Peter Gooley of Glossodia.
Ms Templeman thanked Dr Ravi for highlighting the problem in the Hawkesbury. “We want to congratulate Ravi for that initiative,” she said. “These are people who don’t have a voice.”
She said with one in three Australians predicted to eventually be diagnosed with dementia, her government was on to the size of the problem. “Bill Shorten made a speech yesterday that it was one of the top priorities for a Labor government,” she said, adding a collaborative effort was needed to do research and find a cure “and treat them with respect in the meantime”.
She said the clear message that came out of the forum was that people didn’t know how to access what help there was available, and that there were gaps in the services.” “The key thing is how can we bring all this together,” she said, adding there was also an economic incentive to address the rise of dementia. “A report came out recently which said if there was a five per cent reduction of people with dementia it could lead to a saving of $140 billion over the next 40 years,” she said.
Dementia coach Mr Gooley offered another sobering statistic. “The value of replacing all the work of those unpaid carers is $60.2 billion nationally per year,” he said, saying both sides of government have to work together to address dementia, and that the community needed to step up as well, as in decades past.
“Cook them dinner, drop a meal down there,” Mr Gooley said. “We need to educate people and tell the stories of what carers do every day, without sugarcoating it but without scaring people away.” He saw supporting the carers in the home as critical to the way forward, and that if they were supported to keep the person diagnosed with dementia safe, contented and pain free, then it would keep those with dementia out of hospital. He said if this wasn’t done, “we end up with ‘bed block’ where people drop the person with dementia at hospital, saying ‘we can’t do this anymore’.
“We can’t keep relying on government to do this – we need to press the compassion button,” he said.
Councillor Danielle Wheeler said it was clear “we’re failing the carers” but that Council was possibly in a position to help. She said dementia would be put on the Council website as a separate heading to help with finding services, “but often people who need these services aren’t online”. “We’re also going to put more information in the library.” She also suggested information videos to get the message out there.
Dr Ravi said dementia services needed to be added to Medicare so people could access them at a subsidised rate.
Everyone agreed there was too much fragmentation of services for dementia and it was said even hospital staff weren’t aware of what dementia services were out there already to keep sufferers at home. Ms Templeman also said there was a need for better trained, better paid aged-care nurses.
Narelle Bossard of the Dementia Advisory Service said she was surprised to see so many people she didn’t know at the forum, which was great as “there are so many people out there who don’t know help exists”.
On the same day as the meeting Richmond resident John Miller travelled into Macquarie Street to see NSW Minister for both Aged Care and Mental Health, Tanya Davies, about his idea for a centre for excellence in aged care in the Hawkesbury. Hawkesbury MP Dominic Perrottet’s office set up the meeting for him last week, at which he also showed letters of support for the idea from Windsor doctors Rory Webb and Ravi. Mr Miller said Minister Davies said she would investigate what demand there was for such a centre.
- Dr Ravi is asking for community volunteers interested in the idea of helping dementia sufferers each week and who would be prepared to do some dementia training, to register with him. Email your name and phone number to ravisheela4549@gmail.com and you will be kept up to date on developments.
What Council is doing already
- Council staff were trained by Alzheimer’s NSW in 2013 to conduct dementia-friendly tours at Hawkesbury Regional Gallery on the third Tuesday of each month or by booking.
- Hawkesbury Community Care Forum looks at increasing people’s engagement in the community, including people with dementia.
- Council hosts events during Dementia Awareness week in partnership with Anglicare and Alzheimer’s NSW. The next will be held here in 2018.