People living with dementia (PLWD) are twice as likely to be diagnosed with urinary incontinence (UI) than those without dementia. UI becomes increasingly common as the disease progresses (1). Both dementia and UI impair the health and well-being of the individual, but these conditions also affect care partners (CP), spouses or family members who provide day-to-day care for the individual, who may experience stress and depression (2). Furthermore, the burden of managing UI has been associated with the CP’s choice to move the PLWD from the community to a care home (1). There is a paucity of evidence informed UI management for PLWD so trial and error is often employed (1). This exploratory study aimed to gain an understanding of the daily experience of UI, its management and impact on community dwelling PLWD and their CPs via semi-structured interviews. With a deeper understanding of how UI affects PLWD and their CP, management strategies tailored for PLWD can be developed.

Qualitative description design. Between September, 2021 and January 2022, participants were recruited in dyads from a secondary care continence clinic, comprising a community dwelling PLWD and their CP. PLWD with either moderate or severe UI on the Sandvik severity index were included (3). After reviewing participant information sheets, verbal consent was given to take part in a semi-structured interview, lasting up to 45 minutes, conducted either over the phone or by Zoom. Due to the virtual nature of the interview, this approach was approved by the local ethics board. The PLWD and their CP were interviewed together, and each were asked questions pertaining to their experiences with dementia and UI management. Topics of enquiry included the nature, extent, duration and likely underlying nature of the UI and the history of healthcare seeking or self management of UI. Using a semi-structured interview guide, participants were asked to identify UI management strategies they had employed and their experience with them. Additionally, the impact of dealing with dementia and UI on the CP, the PLWD, and the relationship between the dyad was explored. The interviews were digitally recorded, de-identified and transcribed verbatim. Data were analyzed using a content analysis approach. The first two transcripts were independently coded by three researchers who then met to compare notes and develop the coding framework. The remaining transcripts were coded by a single researcher, and any new codes were reviewed with the other researchers. Data for each code were reviewed by the team and collapsed into categories and themes.

Eight dyads, consisting of married male and female partners were interviewed. Data analysis resulted in 17 categories and 5 themes. The themes included 1) What brings it on, 2) Trying to manage, 3) Asking for help, 4) Relationship and 5) Burdens (Table 1).
What brings it on: 
UI was described by the CP and or the PLWD in terms of UI triggers, cause, timing and severity. UI triggers were physical and auditory, such as laughing, coughing and running water. Washroom accessibility related to dementia symptoms (e.g. not remembering to go to the washroom), particularly at night, was discussed as a contributor to UI. PLWD and their CP described UI in terms of timing and severity, with emphasis on the fluctuation of severity over time.   
Trying to manage: 
PLWD and their CP spoke about how they managed UI. This included how they initially addressed UI and a variety of strategies that either worked or didn’t work. PLWD and their CPs were unsure how to address UI, and they believed that when they identified leakage as being UI, it made it more of a concrete problem. Dyads discussed 3 main types of management strategies: preventative/anticipatory strategies, aids and devices, and social strategies. Preventative measures included strategies such as setting a reminder timer for the washroom and using the washroom whenever they had access to prevent UI. Aids and devices were containment products (e.g. pads, depends or plastic bedding) or physical aids (e.g. a walker or a raised toilet seat). Social strategies, including hiding UI from others, were used in an effort to reduce the social impact of UI. Management strategies had varying efficacy. Some dyads felt that advice about UI management strategies were limited or non-existent or that healthcare professionals were not sure how to address UI. PLWD and CP discussed hypothetical management strategies they believed would be beneficial, such as something to stop leaks or control their urgency.   
Asking for help:
PLWD and their CP’s talked about seeking information or additional assistance from a variety of sources to manage dementia and UI, such as their children and hired help. The CP and or the PLWD spoke about wanting information from healthcare professionals, including physicians and nurse practitioners, on how to control UI and some of the barriers to accessing this information, such as waiting for healthcare and unclear or conflicting information.    
Relationship:
Dealing with UI and dementia changed the relationship between the PLWD and the CP in both positive and negative ways. The CP spoke of supporting the PLWD beyond assisting with tasks through being attentive and encouraging independence. Dyads experienced changes due to dementia and UI, but they were able to accept these changes.
Burdens:
The PLWD and their CP experienced considerable burdens as a result of dealing with dementia and UI. Some aspects, like sleep interference and having to change clothes following an accident were specific to the PLWD, and others such as fatigue and an increase in responsibility were unique to the CP. Additionally, a diminishing social life, frustration and the possibility of relocation to a care home were felt by both PLWD and CP.

According to PLWD and UI and their CP, dementia symptoms were implicated in the occurrence of UI. Although PLWD and their CP were unsure about how to manage UI and information on how to do so was difficult to obtain, some dyads were able to adopt management strategies that were beneficial. On the other hand, some dyads discussed management strategies, such as medication, that were minimally effective, and felt that choices for UI management were limited. Additionally, some dyads found healthcare professionals unsure about how to address UI. Dyads expressed multiple effects as a result of dementia and UI, including both positive and negative consequences for their relationship and the impact of specific burdens.

For PLWD and their CP, UI is associated with relationship changes and burdens. Although some PLWD and their CP were able to find effective ways of managing their UI, others did not and some felt that this was due to shortcomings of the healthcare system. 
To improve the situation, dementia specific UI management information should be created to address the factors illustrated here, means to ensure wide information availability ensured, and clinical management strategies for UI specific to PLWD developed.

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Continence 2S2 (2022) 100279
DOI: 10.1016/j.cont.2022.100279