In this study we found that the 12-month period prevalence of FI was 26.7% (2082/7775) for people with dementia in the community who had an interRAI-HC assessment. This is towards the upper end of the range for prevalence of FI indicated in other community studies (0–27%).15–17 Extrapolated to the estimated population of people with dementia living in the community in New Zealand (N = 69713),1 18480 may have experienced FI in 2020/2021. This may be an over-estimation as an interRAI-HC assessment is undertaken where there is a perceived need for support from home or health care services. This means that the sample of older people receiving assessments are not representative of the general population. However, the 12-month period prevalence for people with dementia assessed for care and support, is likely more robust than previous studies in Hong Kong, Republic of Ireland, and Turkey that were based on small convenience samples of participants (ranged from 82 to 197), drawn from dementia associations or geriatric out-patient clinics.15–17
The incidence of FI was 19 per 100 person years for people with dementia and 12.3 per 100 person years for older people without dementia. Controlling for significant factors, people with dementia had a 1.7 higher risk of developing FI than older people without dementia. While the latter results is consistent with a study that indicated an increased hazard ratio of FI for people with dementia when compared to people with cancer,31 incident FI for people with dementia was much greater than observed in the UK: 11.1 for men and 10.1 for women per 1000 person years. Differences may be due to variations in the mean age and composition of samples: the UK sample comprised all older people (60 + years) registered with 500 General Practices in one region, whereas the interRAI dataset comprised older people (65 + years) assessed for care and support at home in New Zealand. It is also conceivable that differences are related to under-reporting of FI and the adage “if you don’t ask, they won’t tell”.32
Studies of the general populations have indicated that only a minority of people with FI (5–27%) disclose the stigmatized condition to their general practitioners.32 We found UI significantly increased the risk of FI for people with dementia (OR = 1.7, 95% CI 1.5–1.9), but elsewhere, it has been noted that there is less disclosure of FI for people experiencing dual incontinence.33 In Spain, introducing FI screening into a diagnostic tool used by nurses identified three times the number of people with FI within 16 months compared to the number that had been identified in the previous 3 years. The greater rate of incident FI for people with dementia in New Zealand may be due to the direct questions incorporated into the interRAI-HC assessment, whereas an absence of routine screening in primary care practices coupled with the reluctance to report FI18 may have contributed to the lower incidence rates captured by UK data.
In the multivariate analysis smoking appeared to have a protective effect reducing FI for people with dementia (OR = 0.7, 95% CI 1.2–1.5). This finding could be detrimental to public health and should be viewed with extreme caution. Even if smoking did offer a protective effect this is unlikely to outweigh the adverse health effects of smoking.
Multivariate analysis showed that the risk of developing FI for people with dementia was greatest for those who were dependent in ADLs (OR = 1.6, 95% CI 1.5–1.8), had a diagnosis or Parkinson’s disease (OR = 1.3, 95% CI 1.0-1.7), experienced urinary incontinence (OR = 1.7, 95% CI 1.5–1.9), or were of Pacific ethnicity (OR = 1.4, 95% CI 1.1–1.8). The first three factors have been reported previously as risk factors for FI in adult populations,18,24,25 but to our knowledge these factors, along with Pacific ethnicity have yet to be identified as specific risks for FI for people with dementia. Two of these factors (dependent in ADLs and diagnosis of Parkinson’s disease) are indicators of functional limitations. The increased risk of FI for people with dementia who exercise less than 1 hour per week (OR = 1.3, 95% CI 1.2–1.5) is also consistent with this finding. Together these factors suggest that increased risk of FI is associated with functional impairment and reduced ability to reach a toilet in a timely way.25 Additionally, physical activity plays a role in the neuromuscular health affecting anorectal function.27 Thus, improving mobility through physiotherapy, occupational therapy or environmental interventions may reduce the risk of FI for people with dementia.35
In the multivariate model Māori ethnicity was protective of FI for the non-dementia cohort but not for the dementia cohort. Research examining the barriers to diagnosing colorectal cancer suggested that privacy and cultural safety of health services were appraised by Māori when considering whether symptoms such as diarrhoea and changes in bowel habit warranted medical investigation.36 The results of our study may suggest lower reporting in the non-dementia cohort in which older Māori may prefer to deal with FI privately. On the other hand, FI coupled with dementia was reported at a similar rate to the non-Māori cohort suggesting that for this population, incontinence cannot be managed privately.
We have outlined some of the limitations of this analysis above. The New Zealand sample is not a general community sample, but a sample of people who have health care support needs and have undertaken an interRAI-HC assessment. About 10% and 40% of New Zealanders over the age of 65 and 85 years had an interRAI assessment, respectively. Despite this limitation, this is one of the largest studies exploring the incidence, prevalence and risks associated with FI for people with dementia. Moreover, because interRAI-HC is more likely to capture data from people with dementia (who may be less inclined or able to participate in surveys) the findings may be more representative of this particular cohort than smaller convenience samples used in previous analyses.15–17 The routine data collected via interRAI instruments has high validity, reliability and low rates of missing data which can be considered a strength of this paper.