We Need to Talk About Dementia

“He’s a dangerous psychopath.”

That was the response of one family member when my beloved great uncle was diagnosed with dementia.

Sure, Uncle Rod would get testy from time to time.

He’d whack the floor with his cane when he couldn’t remember something.

But you could understand his frustration.

His diagnosis split the family. Some wanted to bundle him off to an aged care facility. Others – like me – supported his right to stay at home.

I took annual leave and organised a roster of family, friends, and carers from the government-funded HACC and ACAT schemes.

The free in-home care covered 12 hours a week; any gaps were filled by private nurses. Soon, the money ran out. His condition deteriorated.

Now, we’re searching for a place for him in an aged care system that’s “complicated, inflexible, and largely unable to meet dementia sufferers’ needs”, according to a report released yesterday.

It found the system is effectively broken, blighted by inadequate and inflexible community care packages, long waiting lists, a lack of transparency in administration costs, and bureaucratic roadblocks.

It’s only going to get worse.

Within 10 years the number of people living with dementia will almost double, to 400,000.

There are 1600 new cases diagnosed every week.

The Minister for Mental Health and Ageing, Mark Butler, told Fairfax, “For many older Australians, ‘dementia-specific care’ is matched by the reality of locked wards.

This was Uncle Rod’s experience.

During one brief stay in an aged care facility, a security guard tackled him to the ground when he wandered off.

Then he tied him to the bed.

His arms bear the scars of his abuse.

The report calls for more pay and better training for staff, in all aspects of dementia.

“This is a critical element of reform if we are to create a system which gives older people the opportunity to age well – with dignity, choice and quality services,” the Australian Nursing Federation’s Lee Thomas says.

Anyone who has a loved one with dementia knows the difficulty in obtaining a correct diagnosis.

The sufferer is often in denial.

A caring, patient, and supportive reaction by caregivers – including family, friends, and nurses – is critical.

Sadly, the condition is still stigmatised.

“There is a dramatic contrast between the experiences of (those) who benefited from timely diagnosis and referral to services, and the overwhelming majority of those who were traumatised by poor diagnosis, lack of information, and care services that had next to no understanding of dementia,” according to the CEO of Alzheimer’s Australia Glenn Rees.

For years, Uncle Rod put up with being either patronised or bullied by those around him.

Like most of us, he wanted to stay at home during his twilight years.

“The current system does not provide adequate support and assistance to enable people to remain at home,” the Minister admits.

He wants things to change.

But that means stumping up cash in the May budget, at a time when the government is scrambling for a surplus by 2012/13.

Alzheimer’s Australia is lobbying for an immediate injection of $500 million, while the National Aged Care Alliance wants a complete overhaul of the aged care system.

Nurses, alongside dementia patients, have taken to the streets to shine a spotlight on what they call an “epidemic”.

But it’s not just about the money. Dementia needs to be demystified.

Hopefully, one day, people like Uncle Rod will be treated with the dignity they deserve.