Dementia Australia has delivered a communique, Our Solution: Quality care for people living with dementia, to the Minister for Aged Care and Senior Australians, Senator the Hon Richard Colbeck, outlining what quality aged care means to people living with dementia, their families and carers.
Written from the perspective of people with lived experience, the communique marks the first turning point in Dementia Australia’s Quality Dementia Care initiative, which seeks to develop baseline and ‘gold’ standards of care, and link them with the eight new Aged Care Quality Standards that came into effect 1 July 2019.
Dementia Australia CEO Maree McCabe said people with a lived experience of dementia wanted to ensure their voices were heard, that quality care involved them and that their contribution led to greater inclusion, support, respect and ultimately, improved quality of life.
“This is not just about quality dementia care; it is about providing quality aged care to people living with dementia, as well as their families and carers,” Ms McCabe said
“The introduction of the eight standards are welcomed and their release has led to a series of discussions about quality dementia care. This discussion articulates how quality dementia care looks and feels and identifies the key points of difference between quality dementia care and aged care more generally.”
The communique reflects a human rights based approach and outlines the collective consumer views against each of the eight standards. Dementia-specific recommendations are applied to each standard, reflecting the needs of a person living with dementia, their families and carers.
This includes dementia specific training shared and supported decision making that centres on the person with dementia; flexibility and continuity of care; meaningful activities to maintain a sense of community connectedness; providing a sense of community and transparent accountability for quality dementia care, with key performance indicators that are specific, clear and measurable embedded into practice.
The communique was informed by material collected from a series of 31 focus groups held across Australia. They were followed by a national consumer summit held in Canberra on 26 June 2019, and attended by Dementia Advocates and together with a range of observers including leaders from aged care peak bodies and the Department of Health.
Dennis Frost, who has been diagnosed with frontotemporal dementia (FTD), participated in the development of the Communique and is pleased that the government is hearing from people who are living with dementia.
“People with dementia need to represent themselves and be included as equal partners and decision-makers when talking about quality care” Mr Frost said.
“If you can get it right for dementia, you can get it right for everyone else.”
“Dementia Australia and consumers are asking that government formally adopt the perspectives and information provided to them in the communique in accreditation standards for aged care homes to ensure a quality of life now and into the future for all people impacted by dementia,” Ms McCabe said.
The full Communique Our Solution: Quality care for people living with dementia is available here.
Dementia Australia’s Quality Dementia Care initiative is a three stage project starting with the National Consumer Summit and incorporating a National Sector Roundtable on 12 November and a National Symposium on 24 March 2020 in Sydney. To register interest in the Symposium please visit https://www.dementia.org.au/conferences.
Congratulations on presenting this submission to the Minister. It addresses exactly the issues my mother and I have been facing with an aged care provider. To have quality dementia care included in the Aged Care Quality Standards would ensure adequate staffing and better training of staff. Hopefully the owners of aged care homes would also be required to ensure adequate personal care staffing which seems to be the greatest hurdle to overcome. Well done and thankyou to everyone who was instrumental in achieving this.
I care for my Mum Joan Addison She's a vibrant , intelligent and determined 85 year old living with Dementia in a wonderful aged care facility in Warriewood NSW Our journey with Dementia started a few years ago , when my Dad John Addison deveoped Vascular Dementia however my and their own ignorance of the disease lead to their being discriminated against by their local council. Had I known then what I know now about how dementia affect ed their decision making and had council staff been better trained I believe our family would have possibly been saved many year's of trauma caused bye Parramatta council One one hand they offered support through meals on wheels and the other harassing them through ignorance of their ability to maintain their home issuing them with threats and constant harrassment. After a long and expensive battle , the council representative backed down It had left my family traumatized Mum now requires 24/7 care and myself seeking therapy and my lost his life fighting for his right to live with dignity in his own home. I hope discrimination ends and I believe together with helpful advice and lived experiences with dementia things will change for the better. By telling my story I am hoping no one else will suffer discrimination at the hands of ignorant council employees as my family has.