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The cost of caring

There are presently 2.7 million unpaid family and friend carers in Australia1 looking after the most vulnerable in our society, including approximately 140,000 who need help with bladder or bowel control2.

For people living with Parkinson’s and their carers, continence management is one of the most confronting and difficult conditions, according to Parkinson’s Victoria clinical nurse consultant and health team manager, Victor McConvey.

It is well understood that the care needs of people with incontinence are much higher than those of others needing care. The majority of these carers are female (81%), most (73%) spending 40 or more hours each week caring, and more having their sleep interrupted (42%) than other primary carers (19%) 3.

There’s also a financial cost; the productivity loss to people who work unpaid as carers of people with incontinence is estimated to be $2.7 billion annually 4. There’s also an emotional cost; we know these carers are twice as likely to report stress-related illnesses compared to other carers 3.

People living with Parkinson’s are at an increased risk of bladder and bowel control issues, Mr McConvey said. In the same way that reduced dopamine production causes symptoms such as slowness, tremor and stiffness, reduced peripheral dopamine production in other parts of the body, such as the gut, causes it to slow down as well.

In fact, constipation, which is further exacerbated by the person’s reduced mobility, is one of the earliest and most persistent symptoms of Parkinson’s and the second-most common reason a person with Parkinson’s will present to a hospital emergency department, Mr McConvey said.

Bladder and bowel function are both interrupted in Parkinson’s, but bladder difficulties are significantly exacerbated by constipation, he said, the most common bladder issues being urgency (having to urinate suddenly), frequency (having to urinate often) and nocturia (having to urinate overnight).

Problems with the neural pathway between the bladder and the brain can mean that little warning given before the bladder needs to empty, causing urgency and frequency. Lowered blood pressure and reduced mobility, both of which are common in Parkinson’s, can cause fluid retention resulting in nocturia.

To draw attention to the plight of carers of people with incontinence, the Continence Foundation of Australia will launch its national campaign, Tell someone who cares: phone 1800 33 00 66, during World Continence Week (June 22-28).

The campaign supports the Continence Foundation’s major project for 2015, Carers Count; support for continence management, and the development of several new resources for carers of people with incontinence, such as a carer guidebook, dedicated web pages and short videos on the Continence Foundation website. The new resources outline all the available support services, including the National Continence Helpline.

The Continence Foundation’s chief executive Barry Cahill said support and recognition for the extraordinary contribution carers made to society was long overdue.

“If we want people to be cared for in their own homes longer, then carers need to be better supported through resources and education, preparing people for the challenges they face and reassuring them help is available,” Mr Cahill said.

The National Continence Helpline (1800 33 00 66) is staffed 8am-8pm Monday to Friday by continence nurse advisors who provide advice, referrals and resources to consumers, carers and health professionals. Further information is also available at continence.org.au

  1. ABS (2012)Survey of Disability, Ageing and Carers.
  2. Access Economics (2010)The Economic Value of Informal Care in 2010.
  3. Australian Institute of Health and Welfare (2009), Incontinence in Australia
  4. Deloitte Access Economics’ 2011 report, The economic impact of incontinence in Australia.
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