" Report affirms the key challenges people living with dementia, their families and carers have consistently flagged through their own experiences. "
Urgent calls to end ‘neglect’ in aged care echoed by Dementia Australia

The Interim Report, ‘Neglect’, tabled in October in federal parliament by the Royal Commission into Aged Care Quality and Safety, has affirmed the key challenges people living with dementia, their families and carers have consistently flagged through their own experiences.

Dementia Australia CEO Maree McCabe said for many years people impacted by dementia have contributed to reviews, reports, advisory panels and committees, and they have also made significant contributions to the work of the Commission to date.

“This Interim Report has validated their shared concerns that systemic change is required, workforce capacity and culture needs serious attention and tackling age and other forms of discrimination is vital to ensure the future aged care system is able to support people impacted by dementia,” Ms McCabe said.

“Further, as the Report recommends, Dementia Australia urges the prioritisation of those areas flagged as requiring an immediate response rather than waiting for the handing down of the Final Report.

“An instant injection of funding to tackle the Home Care packages wait list of more than 120,000 people is crucial to so many people living with dementia, who are waiting to receive the support to which they are entitled.

“A coordinated and comprehensive approach to take decisive action to reduce the use of chemical and physical restraint is also essential.

“And urgent changes to the health system and residential aged care can also be introduced now to provide appropriate services and support for the 27,000 Australians living with younger onset dementia.

“Underpinning all of those things is a need for sufficient staff with adequate training to ensure safe and quality care for people living with dementia.

“I commend the work of the Commission to date and especially acknowledge the contribution by Commissioner, the late Hon Richard Tracey AM RFD QC, in addition to Commissioners Lynelle Briggs AO and the Hon Tony Pagone QC.

“Their leadership and dedication to listening, learning and a commitment to change has been inspiring.

“We look forward to a comprehensive focus on the issues important to people living with dementia, their families and carers in the Final Report and we reaffirm our commitment to being part of the solution through the whole-of-system reform and redesign that will be recommended in November 2020.”

For All Dementia Australia comments and submissions to the Royal Commission please visit https://www.dementia.org.au/royal-commission.

 Posted: November 18th, 2019
Discussion

Peter Jackman said:

My wife was diagnosed with Alzheimer's Disease in 2009. In hindsight, I realise the symptoms were there in 2001. It is an insidious disease. My wife is now in acute care after she trashed her room and bit a nurse in the very best high care home I could find. After checking all the homes within 20km of home and trying some of those that meet our criteria; we came to realized that we would not find one on the peninsula that would treat our loved one as an individual. Through luck a position became available at Koo Wee Rup which ticked all the box's. Unfortunately, Maree did not settle in. She was committed and finished up at Kingston in the Biala ward. After treatment Maree was a different person and could not speak. A nursing home was found for her as they decided that she needed acute care. This was at Doveton Chestnut Hill Gardens. There are no Personal Carers. They only have qualified nurses at a ratio of at least 1 to 5. I am only writing this after a letter to the Age from Caire Cooper, Maldon wrote. "No one wanted to put him there, but he became too much to handle at home, including becoming aggressive. I have followed the debate about chemical and physical restraints in aged care. It is horribly distressing to see your loved one in such circumstances, but what is the alternative? Staff members or other patients at risk of violence? In an ideal world, the staff would be properly trained to better manage dementia patients and the staff ratios would be much higher. But that costs money. In my experience of age care, the staff are mostly female, migrant, undervalued, underpaid and undertrained. We expect them to do the jobs that we will not do. there are homes and staff doing an excellent job under very trying circumstances and it seems the opposite is also true. We need to rethink the entire industry. Profit seems to be a driving driving force in a lot of cases". A few comments from me. I try and visit my wife at least twice a week, my daughter once a week, her brother once a month, her niece and an old friend about the same. There are a total of 35 to 40 residents in the Acute Care establishment; of those, I have been told by staff, at least half do not see anybody for months at a time. I can understand this. The person they knew is no longer there. Perhaps, euthanasia should be considered an option. Personally, the thought of prolonging my life in the facilities I have seen, is abhorrent.

david Smith said:

I agree with everything you are saying my wife is in a nursing home and we as resposable people should be doing more to make sure they get the best care available

N. Taylor said:

There needs to be an independent body where areas of concern can be raised by relatives and carers. The current ongoing issues of appropriate feeding and hydration in high care, adequate linen supplies, appropriate response times to toilet buzzers and non replacement of absent staffing is raised via various committees or directed to the administration with issues shut down. The carer does not have the knowledge of where to go to as the next stage of reporting if the situation does not improve. Relatives are also advised to keep their concerns to themselves as they are 'the only ones with issues'. For many relatives that have paid a high price to have their parents cared for - they are in the facility daily to ensure they are fed or even woken for meals. A greater concern is where some staff have not commenced their Cert 3 training prior to caring for our loved ones in a 'care facility' .

Janet D'Amico said:

Thank you hope you are able to contribute to the many improvements outlined in the report & repeated here which are so needed in the proper care of dementia patients. Heartbreaking evidence.

David Childs said:

I received this Monthly news and Views from Dementia Aust. This was the first time i have received an email the Monthly news and views.

Dorothy Trueman said:

As a carer of my husband having Lewy Body for some years, I strongly advocate that there should be far more respect for spouse, and concerned family regarding their loved ones health care plan, as so many issues in relation to their loved ones health are overlooked.

John McNamee said:

Of course, to provide the care that should be given needs bucket loads of money. To have the amount of money necessary may mean having to increase taxes on the rich and organizations that keep making record profits. Is Australia willing to embrace these changes or do we just continue to wring our hands and say, “O isn’t it a shame.”

Anne said:

Perhaps we should have undercover workers go into nursing homes and make sure our Dementia residents are receiving the appropriate treatment, respect and care they deserve. When my mother was in a nursing home, there were some (not majority) staff that had no idea about why my mum did certain things and complained to us about it. We fought many battles trying to explain this is because she has Alzheimer’s. More training for staff on Alzheimer’s and Dementia is a must! I’ll go in as an undercover and keep an eye on these nursing homes suspected of wrong treatment of residents. These residents were once someone’s baby, daughter, son, mother’s, father, and grandparent. Treat them with the utmost respect at all times.

Jane Ewing said:

Carers are penalised in many ways as seen in other quotes and comments. Carers of younger onset dementia people if they have to work as they have a mortgage to pay are, in addition, made to also pay for the care of their loved one amounting to 10s of thousands of dollars and therefore unable to save much if at all for their own retirement.

Magdalena Cabrera said:

It is essential to have training in Dementia. I have work in age care for 15 years and you need negotiation skills along with patience and compassion.

Mick Carmody said:

Training in the aged care sector on the living standards, needs and specific needs is a must from all levels of management as well as carers. The attitude of "Yes I know all about Dementia" is wrong. Hell, they do not understand that a person living with Dementia must "GEL" with a carer before that person can shower them, not just say here is "Mary" make it work as there is not anyone else so the resident showers themselves 7 days a week even though they are classed as a "HIGH Falls risk" Private enterprise are still able to do whatever they want.

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