Incontinence is affecting an increasing number of people. It is an uncomfortable issue, yet its serious nature warrants a better understanding of the experiences of sufferers and their carers. This report looks at the prevalence, experiences and cost of incontinence in Australia, with a focus on people with severe incontinence. It suggests a set of standard questions for collecting information to improve accuracy and comparability of data.

Who does incontinence affect?

In 2009, 316,500 people (1.5% of the Australian population) experienced severe incontinence. Of these people, 91.0% also had a severe or profound core activity limitation, indicating they had high-care needs. About 1 in every 14 people aged 65 and over (7.2%) and nearly 1 in 4 people aged 85 and over (24.5%) experienced severe incontinence, compared with 1 in 166 people aged under 65 (0.6%).  The prevalence of severe incontinence was higher in females (2.0%) than males (1.0%).

Evidence is limited about the prevalence of incontinence among Aboriginal and Torres Strait Islander people, and culturally and linguistically diverse, and sex and gender diverse communities, and results are mixed. While some groups have higher risk factors for incontinence, more research is needed to know whether this translates to higher prevalence.

About 72,900 primary carers provided help with managing someone else's incontinence-4 in 5 carers were female (81.2%), and 3 in 4 spent 40 hours or more per week caring (73.0%).

How are people affected?

People with severe incontinence generally experience more severe disability and health problems than other people with disability. While this report identifies many of the problems caused by severe incontinence, it is difficult to determine the extent to which these are partly caused by accompanying limitations and health issues.

The labour force participation rate for people with severe incontinence was 26.1%, considerably lower than for people without severe incontinence (55.8%). People aged 15 and over with severe incontinence were more likely to report being in fair (34.0%) or poor (22.2%) general health than people without severe incontinence (24.8% and 10.4% respectively).

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. This is likely due to a combination of: the effect of tasks involved in helping manage incontinence; and that over 90% of people with severe incontinence also had a severe or profound core activity limitation, indicating they had high care needs.

How much is spent on incontinence?

In 2008-09, the estimated total expenditure on incontinence was $1.6 billion, with the largest share spent on residential aged care ($1.3 billion), followed by hospitals ($145.5 million), the Stoma Appliance Scheme ($67.6 million) and the Continence Aids Payments Scheme (formerly the Continence Aids Assistance Scheme) ($31.6 million).