Unless the government provides greater support for the 2.6 million unpaid carers looking after our elderly, chronically ill and disabled, it faces a looming health crisis.

This warning was delivered last month to Federal Parliament by five healthcare organisations, including the Continence Foundation of Australia, in a white paper, Defusing a Ticking Time Bomb (5MB).

Collectively, unpaid carers provide the government with $40 billion worth of care, and failure to address their increasingly complex needs will have dire consequences for the aged and healthcare systems, it predicted.

Health advocates argue that the antiquated system of voluntary home care is at tipping point and unable to cope with the 250 per cent surge in demand predicted over the next 40 years.

The group noted that carers experienced higher rates of mental health problems, particularly anxiety and depression, and chronic diseases such as diabetes, asthma, arthritis and cardiovascular disease.

It said providing care had a negative impact on the health of carers, who bear a largely hidden burden that was detrimental to their wellbeing, and could lead to burnout.

The problem is one the Continence Foundation has recognised for some time, with a report last year by the Australian Institute of Health and Welfare, Incontinence in Australia, acknowledging the added stresses that carers of people with severe incontinence endure.

AIHW spokeswoman Dr Pamela Kinnear said that “primary carers who assist people with severe incontinence are more likely to report strained relationships with those they care for, to need more respite care, and to report lower labour force participation” than carers of people without severe incontinence.

“This could be due to the intensive nature of managing severe incontinence, as well as the fact that most people with severe incontinence had significant core activity limitation,”Dr Kinnear said.

According to the AIHW report, there were 72,900 primary carers who helped manage severe incontinence in 2009. Most carers were female (81%), most spent 40 or more hours each week caring (73%), and more had their sleep interrupted more often (42%) than other primary carers (19%).

A person’s incontinence is often the tipping point for their carer no longer being able to cope with the level of stress, and handing their care over to a nursing home.

Research funded by the Federal Government’s National Continence Management Strategy (1998-2010) revealed that incontinence, particularly when combined with dementia or mobility issues, was the catalyst  for carers admitting their loved ones into an aged care facility.

Continence Foundation of Australia chief executive Barry Cahill said this information, along with the White Paper, drew attention to a home care system that was buckling under pressure.

“It is time for Government and all involved in the care system to come together to ensure that those requiring care, and their carers, receive the services, support, education and financial assistance they need,” Mr Cahill said.

He said a key principle of the White Paper was that reform needed to be geared towards meeting the true needs of care recipients and their carers.

“About 75 per cent of people want to be cared for in their own home when they reach the end of their lives, but at the moment we’re not able to meet these people’s wishes.”

He said education was one of the fundamentals that needed to be addressed to ensure carers were able to carry out their roles successfully.

“A particular focus must be placed on providing adequate education and information to carers who are often unprepared for the tremendous challenges ahead of them.”

He said urgent action by government, healthcare professionals and professional care workers was needed so that patients and their carers are not left in a ‘swim or sink’ situation.

Anyone caring for someone with incontinence, or experiencing incontinence issues, can phone the National Continence Helpline on 1800 33 00 66 for confidential advice, referrals and information. Information about financial assistance for continence products, such as the federal Continence Aids Payment Scheme, is also available.  

The Helpline is a confidential service staffed by continence nurse advisors who provide free information and advice to Australians directly or indirectly affected by incontinence. Information is also available at continence.org.au

The White Paper incorporates the recommendations and insights of advocates from organisations including Carers Australia, Palliative Care Australia, Continence Foundation Australia, Pharmacy Guild of Australia, the Australian Wound Management Association and Wendy’s Home Services.