People living with dementia have yet to hear from the Federal Government that dementia will be a core focus of the reform of the aged care system.
At a Parliamentary Friends of Dementia event in Parliament House, Canberra, Maree McCabe, CEO of Dementia Australia, called on all parliamentarians to elevate dementia as a priority when addressing the recommendations in the Royal Commission into Aged Care Quality and Safety’s Final Report.
“With 472,00 Australians living with dementia, 70 per cent of them living in the community and of those in residential aged care 70 per cent having a moderate to severe form of cognitive impairment, there needs to be a significant commitment to dementia care made by the Federal Government in words and in action,” McCabe said.
“The frustrations and fears felt by people living with dementia and carers are valid. They have contributed in good faith, for many years to reviews and enquiries and now have entrusted their lived experience expertise to the Royal Commission,” McCabe added “Dementia is a progressive, terminal disease. People living with dementia cannot put their symptoms on pause while waiting for change. They are devastated that to date little action has been taken.”
Advocates of the disease addressed the audience of members of parliament and aged and health care leaders.
Nell Hawe who at 52 was diagnosed with younger-onset Alzheimer’s disease in 2020, said her diagnosis has been harrowing.
“Experts were complacent and they wanted to brush it off and call it stress. I went for two years before someone would even listen. I could have been on medication during the two years. I do wonder what interventions I could have had in this time. What services and supports did I miss out on? Are my symptoms worse because of the delay in my diagnosis?” Hawe said.
“Neither my doctor nor the geriatrician connected me to services, I had to find these myself. Quality care for dementia means putting the person living with dementia first and at the centre of decision-making and their care. I do not want someone else to decide what is appropriate for me if they do not know me as a person.” Hawe added. “We want to be around people who are empathetic, not sympathetic. People living with dementia don’t want your sympathy. I don’t want you to feel sorry for me. I want you to walk by my side and help me decide what is appropriate for me,”
Keith Davies, carer for his wife, said abuse and neglect were some of the most disappointing and frightening findings to come out of the Royal Commission into Aged Care.
“We will all be old someday, some of us are already there. We may need to be cared for and would like to think we would be cared for properly,” Davies said.
Peter Swindell, a carer for his wife, said quality care will only be achieved through a person-centred focus… and a requirement for mandated levels of education and training including compulsory dementia components.
Dementia Australia has provided the federal government with a clear plan on what is needed to deliver quality care in preparation for the May budget – this includes:
“Now the final report and recommendations by the Royal Commission have been released the government have all they need to seize this once in a generation opportunity to transform dementia care and the aged care system overall,” McCabe said. “There is no more time for delay. They must act now.”
Dementia Australia is the source of trusted information, education and services for the estimated half a million Australians living with dementia, and the almost 1.6 million people involved in their care. For support, please contact the National Dementia Helpline on 1800 100 500. An interpreter service is available and the Helpline is open 8 am to 8 pm Monday to Friday excluding public holidays. The National Dementia Helpline is funded by the Australian Government.