Impact of urine and mixed incontinence on long-term care preference: a vignette-survey study of community-dwelling older adults

Increasing public spending on long-term care (LTC) is a major economic issue that must be addressed [1]. Since the Switzerland monthly cost is 15 times higher per resident in nursing homes (NH) than for people staying at home [2], many authorities have implemented measures whose primary objective is to keep people at home as long as possible, while maintaining a good quality of life and ensuring access to appropriate care. As a result, over the last decade in Switzerland, the rate of long-term institutional care has fallen from 6.4 to 5.8% among those aged 65 and over and from 17.9 to 16.8% for those aged 80 and over [3]. However, a shift towards home care is not observed in the same proportions across Switzerland. There are still clear differences between French-speaking and German-speaking regions, the latter being characterized by a higher level of use of nursing homes and a lower level of home care [4]. Despite efforts to develop home care and support services, the demand for institutionalization is growing due to the increasing number of seniors and represents a significant challenge for the health system.

Causes for admission to NH are multiple and result from complex interactions between the person’s characteristics, caregivers, service providers and environment [5, 6]. According to Andersen’s model of access to care [7], factors involved in the choice between various options of LTC (e.g. delivered at home or in institutional setting) can be clustered into three broad categories: (1) predisposing factors representing socio-cultural characteristics of individuals prior to their illness; (2) enabling factors corresponding to logistical aspects of obtaining care and (3) need factors that represent functional and health problems.

Among need factors, incontinence has been identified as a potential predictor of institutionalization independently of other factors such as age, low self-rated health or functional impairments [8, 9]. However, these results were obtained in older patients while they entered in a NH, were partly inconsistent, and focused mainly on the presence of urinary disorders. Urinary incontinence (UI) and fecal incontinence (FI) are prevalent health conditions in old age and, although they may compromise the quality of life and increase caregivers’ burden [10, 11], they are often overlooked [12].

From a public health policy perspective, a better understanding of the role of UI and/or FI on older adults’ choices between LTC options, and of the factors associated with preferences, may help to identify targets for interventions to further reduce the share of institutionalization in LTC. The objective of the present study was to assess the impact of incontinence on LTC choices among community-dwelling older citizens. We hypothesized that: (i) UI and FI as components of needs for help and care both have an impact on the place of LTC considered as most appropriate and (ii) respondents’ predisposing, enabling and need factors, classified according to Andersen’s model, change LTC preferences.

In this population-based study of people aged between 68 and 82 years, we found that (i) incontinence as part of the disability profile, and its severity, significantly influenced the opinion expressed by older citizens regarding the place most appropriate for LTC delivery; (ii) the own characteristics of respondents such as age, gender, education level, caregiver role and knowledge of community-based services had a significant impact on LTC choices while their need characteristics, including self-reported difficulties in ADL or incontinence, did not influence opinions.

The significant influence of UI, shifting preferences towards SH and NH, is consistent with results of previous studies that reported an increased risk of admission to NH in people suffering from UI [19, 20] attributed to its physical and psychosocial consequences [21]. In case of MI, institutionalization was the most frequent choice in our population. This observation suggests that as the severity of incontinence increases, so does the risk of NH admission. However, other studies reported an absence of interaction between UI and FI on the prediction of institutionalization [22, 23]. Discrepancies may stem from methodological differences as we used multivariate analysis while other studies have applied univariate analysis [23, 24]. Moreover, the lack of distinction between UI and FI [20] and absence of consensus on the definition of FI may explain different effects of FI on institutionalization [24].

Surprisingly, personal need characteristics of older citizens, especially their own ADL disability and incontinence, had no significant impact on their opinions regarding LTC. The similarity of opinions of those without incontinence, and those with incontinence suggest that normalization, living with the condition and managing it ceases to become relevant as opposed to conjectural future incontinence. However, LTC preferences were affected by demographic and socio-economic factors. Women were more likely to choose institutionalization when the vignette presented UI. As primary caregivers at home [25], they could be more conscious of the workload imputable to the UI disability and therefore choose institutionalization more than men. UI may also have a greater impact on men’s general health [21] and functional capacities [26]. With the addition of FI to the disability profile, the difference between men and women in LTC choices receded and NH was advocated by both genders. In line with this observation, several studies have found that the association of UI and FI was not a gender-specific predictor of institutionalization [23, 27]. The citizens’ age also influenced choices. While LTC delivered at Home was still preferred in all age groups in case of UI, older respondents selected this option more often. With MI, NH was the most frequent choice irrespective of age but older people were also more likely to prefer the Home option than younger participants. However, previous studies investigating the use of LTC did not show any interaction between age and UI or FI on NH entry [9, 24]. Educational level was the third predisposing factor weighing on choices. Respondents with higher levels of education were more likely to choose SH rather than NH when the vignette presented a person with UI. They may have better knowledge of disabilities, treatments and the range of coping solutions. In a systematic review, Luppa et al. [28] reported some impact of education on LTC choice with preference for institutionalization associated to a low level of education.

Enabling factors may influence older citizens’ opinions on appropriate LTC. When the vignette showed a person with UI, respondents who were caregivers recommended Home more often than those who were not. However, Thomas [29] and Di Rosa [30] reported that incontinence was the most frequent complaint and source of stress for caregivers. Several studies revealed that between 36 and 53% of caregivers reported burden caused by UI and more for MI [24, 31‐33]. Moreover, many studies indicated that caregivers’ burden was a predictor of institutionalization [34‐36]. Severe incontinence may exceed the potential of informal care and Kauppi et al. [37] have reported that partial assistance provided for older person (i.e., covering only part of the gap to reduce but not eliminate the excessive burden) was a predictor of institutionalization. The knowledge of health services also influenced LTC choices, particularly in the case of severe incontinence. Independently of the definition of SH provided in the study questionnaire, previous knowledge regarding SH or CHCC was associated with a more frequent choice of the SH option, both when the majority of the respondents selected LTC in the community as well as when care at home was no more considered as appropriate. The amount and accessibility of information had an impact on LTC use described in another study [38]. Strain et al. [39] also reported that the reason why caregivers did not use alternatives to institutionalization was their lack of knowledge of day center, day hospital and home respite service. However, SH as an intermediate structure between home care and institutionalization has not been well investigated in the literature. Proposing different structures as an alternative to NH admissions could permit to distinguish more precisely the factors related to the choice of LTC [40].

Our results suggest that older citizens’ opinions regarding the most appropriate LTC options are mainly influenced by their socio-structural and economic characteristics, and are largely independent of their own health. Overall, individuals characteristics do not seem to have a strong influence on citizens’ opinions. The effect of incontinence, and particularly of MI, on the acceptance of home care must be considered by policy makers. Indeed, our findings point to the necessity of considering the burden of incontinence acting as a barrier to maintain older adults in the community. Possible actions to promote further developments of LTC provision in the community may include preventive measures targeting risk factors for UI and FI along the life course, appropriate medical care of their causes and manifestations, and increased caregivers’ support, particularly in groups at risk (i.e. with lower socio-economic resources) of turning to LTC provided in an institutional setting.