Adults with intellectual disabilities and incontinence: assessment and toileting issues

Background: Urinary and bowel incontinence are more common in adults with intellectual disability (ID), compared to the general population. Little is known about their incontinence experiences and toileting issues. The aim was to learn about their experiences and toileting issues.

Method: Incontinence and toileting issues assessment was conducted with a community‐based sample of 22 adults with ID and urinary incontinence, with or without bowel incontinence. Assessment included the IPSS, ICIQ‐UI, and POTI checklists; bladder scans; and urine sample screening for presence of a urinary tract infection.

Results: The majority (19 adults, 86%) developed urinary incontinence during adulthood. Seven adults (32%) also experienced bowel incontinence, and constipation was the most commonly reported health condition (13 adults, 59%), other than urinary incontinence. Fifty per cent (11 adults) had been treated for a urinary tract infection within the previous 12 months.

Conclusion: There is an urgent need to develop accessible and reliable incontinence assessment materials with and for adults with ID and their supporters. These assessments should pay close attention to health conditions that can cause incontinence in this group and factors associated with incontinence which are more commonly experienced by adults with ID. These factors are potentially modifiable.