Dementia Australia chair Professor Graeme Samuel has spoken about his experience of dementia in his own family as he presented Dementia Australia’s plan for the future of quality care.

In an address to the National Press Club on Wednesday Professor Samuel called on the federal government to commit to making a difference to the lives of Australians affected by dementia, saying the aged care royal commission has highlighted the “disgraceful” treatment of people with living with the disease.

He also spoke candidly about his personal experience with dementia, saying he watched his mother Shirley, once the “rock” of the family, destroyed by the disease.

Dementia Australia Chair Graeme Samuel addressed the National Press Club on Wednesday, April 14 2021

He said after getting the diagnosis that his mother was in the early stages of dementia he was prepared for the inability to cope with daily tasks, the inability to use kettles and toasters, getting lost, and the phone calls in the middle of the night to check if it was time for breakfast.

“What we were less prepared for were the tears of frustration, increasing isolation and reluctance to leave her apartment, difficulties in dealing with her grandchildren,” he said.

Professor Samuel’s mother passed away “after 15 years of confusion,  bewilderment, frustration, torment and unbearable distress”.

He says he and his family took a vow to ensure other families wouldn’t have to go through the same thing.

“To date, we have not been able to fulfil that promise,” he said.

Roadmap for change

He said dementia is one of the largest health and social challenges facing Australia and based on current statistics every single family in Australia will some does experience the “torment and distress” of a loved one being affected.

Yet it remains “cloaked ion stigma and misunderstanding”.

“In economic terms alone, dementia costs the economy more than $6 billion in healthcare and loss of productivity every year,” Professor Samuel said. 

Professor Samuel says the focus must remain on research, dementia friendly communities and quality of care.

He called for a higher priority for dementia friendly respite care, and an expansion of home care services to support family carers to continue caring for a loved one with dementia longer in the community if that is their choice.

Professor Samuel said the final report of the royal commission showed that the commissioners had taken seriously the evidence presented by people with dementia, their families and friends and provided a rare opportunity for the government to make a difference.

Dementia Australia’s Integrated Roadmap for Quality Dementia Care is based on the views of people living with dementia, families and carers and providers and addresses the gaps and systemic failings and possible solutions outlined in the Royal Commission Report.

It identifies three areas that it says can transform dementia care in Australia over the next three years, including a single point of contact, dementia training for all aged care workers and and dementia friendly design standards across the aged care system.

 Read the full report here .

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