When continence becomes the tipping point: A co-designed dementia course reaches 5,000 carers globally

Incontinence is rarely discussed openly in dementia care. Yet for many families, it is the point at which caring becomes markedly harder.

People living with dementia are three times more likely to experience urinary incontinence and four times more likely to experience faecal incontinence than people without dementia. The impact is not confined to discomfort or inconvenience. Incontinence increases the risk of falls and skin damage and is linked to earlier entry into residential care. It also adds significant strain to those providing support at home.

Researchers from the National Ageing Research Institute (NARI) have published a paper in the Australian and New Zealand Continence Journal describing the development of a Massive Open Online Course designed to support carers managing dementia and continence care. The course, Caregiving, Dementia and Incontinence, has been accessed by more than 5,000 learners across multiple countries.

That level of engagement points to a quiet but widespread need.

The part of care that wears people down

Carers involved in the project spoke candidly about what continence care demands. They described the repetition, the unpredictability and the emotional toll . Supporting someone with toileting and hygiene can change the tone of a relationship. It can trigger frustration, embarrassment and grief.

Research cited in the paper shows severe urinary incontinence significantly increases the hours of informal care required each week. Those extra hours are rarely visible in system modelling, yet they influence carer burnout, workforce participation and decisions about residential care.

For aged care leaders, this is not a peripheral issue. It sits close to some of the sector’s most persistent pressures. Falls prevention. Skin integrity. Avoidable hospitalisations. Family distress. The dignity concerns were repeatedly raised during the Royal Commission.

Continence is often treated as a routine task. In reality, it shapes whether care at home remains sustainable.

Built with carers, not just for them

What sets this project apart is the way it was developed.

Researchers formed a Project Advisory Group that included carers, people living with mild dementia, and aged care staff. Meetings were held online, creating space for carers from regional areas and those juggling daily responsibilities to participate.

Participants did not simply comment on draft material. They shaped it. They asked that dignity remain central. They pushed for practical guidance, from managing night-time continence to knowing what to carry when leaving the house. They highlighted the need to advocate within the healthcare system and to anticipate how changes in medication or the environment might affect bowel and bladder function.

The finished course covers five core areas, including coping with the lived experience, understanding bowel and bladder function, practical continence strategies, the use of aids and skin protection, and navigating care both at home and in the community.

The tone is practical rather than clinical. It reflects lived experience alongside evidence.

A signal for workforce capability

Although designed for family carers, the course has also been taken up by workers in residential aged care. That uptake speaks to a long-standing gap in continence education and communication.

As the sector continues to adapt to reform under the new Aged Care Act and Support at Home, workforce capability remains central. Digital education is not a substitute for clinical supervision or structured training. It can, however, extend access and reinforce practice, particularly in settings where formal education time is limited.

The authors acknowledge that the course is currently English-only and that more work is needed to strengthen cultural responsiveness. Even so, its reach suggests that carers and workers are actively seeking accessible, evidence-based support on this topic.