The impact of incontinence care on you 

Incontinence can have a serious impact on wellbeing for the person experiencing the issue. What is less often talked about is how hard it can be to support someone suffering with incontinence. 

In fact, we know that in some serious situations, difficulties with managing incontinence can contribute to families making the tough decision to move loved ones to supported housing or care homes.  

Struggling with bladder and/or bowel control can create feelings of isolation, but it is important to know you are not alone if you, or someone you know, are affected. Silence around the issue can be a barrier to getting the help you and your loved one needs, which is why it’s important to shine a light on the issue. 

In this article, we look at the different ways incontinence can impact anyone giving support, including family members and friends, and why it is such an important issue. 

Difficulties for caregivers 

If someone we care about is struggling with incontinence, it is normal to want to help them. However, it’s realistic to acknowledge how difficult this can sometimes be.

Challenges in communication, or wanting a reluctant family member to seek medical help, can cause strain in relationships. Supporting with intimate care, including helping an individual change, use the toilet or washing wet or soiled clothing, may cause physical or emotional strain and impact the caregiver’s own well-being or mental health.

Emotional impact of incontinence

Not only can incontinence be distressing for the individual, causing embarrassment, frustration, or anxiety, practical support may be required from family members which can be difficult to accept. This can lead to a decline in self-esteem, a reluctance to engage in social activities and cause difficulties with mental health. If it is happening during the night, it can also affect sleep, which has an impact on daytime functioning and mood for both the individual and those caring for them.

Family members may experience stress and worry about their loved one’s well-being. They may also feel a sense of responsibility and frustration that impacts their own psychological and emotional wellbeing, mental health and feelings of struggling to cope. Adjusting to a new role of carer, particularly when this involves supporting with intimate care tasks, may be difficult.

Financial impact of incontinence 

Money worries can worsen stress when supporting someone struggling with their bladder and/or bowel.  

There is a financial cost to disposable continence products (pads), as well as for toileting aids, additional clothing and washing. There can also be increased expenses related to medical care, such as travel to appointments for assessment and treatment, and the cost of medications that may be recommended to help. Some people may require home modifications to make their living environment more accessible. Some family carers may have to also give up work or reduce their hours to provide required support, adding to financial strain.

Social isolation

Incontinence may impact a person’s confidence to develop new friendships or relationships, or continue existing ones. Fear of leakage, odour, embarrassment, or a lack of accessible toilets in the community may result in the person with incontinence withdrawing from social activities. It may also limit or deter participation in previously enjoyed activities that may exacerbate the incontinence, such as high impact sports, distance running, remote camping, or long country walks. All of these, together with the time it takes to provide practical support, can also impact their life partner or family members.  

Family members might be hesitant to engage in activities that could be challenging for the person with incontinence, or that they previously enjoyed together. Being unable to leave their loved one, or becoming too tired or emotionally drained to continue with their usual activities will also worsen the situation. 

Changes in daily routine

Those providing care may need to adapt their schedules and routines to accommodate an individual who is living with incontinence. This may include assisting with regular bathroom visits, including at night, helping with personal hygiene, changing of pads and being mindful of the availability of suitable toilets in public spaces. These may impact their ability to work, enjoy leisure and maintain social activities and friendships. 

There may be additional washing and cleaning as well as anxiety about controlling odour, avoiding damage to furniture and managing if car seats or wheelchairs need to be cleaned and dried.  

Communication challenges

The misconception that incontinence is always inevitable, along with taboos surrounding bladder and bowel issues, make it difficult to discuss incontinence or know how to access help. These can reinforce feelings of isolation and make it difficult for family members to offer support, search for solutions or improved management options.  

While open communication is key, discussing incontinence can be a sensitive topic that requires empathy and understanding. Challenges may be compounded when there are gender issues, such as a son talking to his mother, or a father to their teenage daughter, or where to do so would breach cultural norms. 

To address these difficulties, it is crucial for the family member to foster open communication, encourage and support those that they care for to ask healthcare professionals for support, and explore available resources. Community support can also be valuable, and connecting with others facing similar challenges can be beneficial for both the individual suffering from incontinence and their caregivers. Seeking medical advice and implementing recommended practical strategies for managing incontinence, can help mitigate the impact on both the individual and the family. Additionally, support groups and counselling may be beneficial for the emotional wellbeing of both the person with incontinence and their caregivers.