Urinary and faecal incontinence are common in the older population, yet incontinence is not a normal part of ageing. Dementia can impact upon a person’s ability to remain continent, yet incontinence is unlikely to be a symptom of dementia until the latter stages of disease progression. There is a misconception that nothing can be done if a person with dementia experiences episodes of incontinence. However, many people with dementia often experience functional incontinence caused by immobility, communication difficulties, disorientation, or the inability to find the toilet, which can all be alleviated if the right support and advice is available. Improving the identification, assessment and management of continence issues can not only enable people with dementia to maintain their dignity and improve their health, but also their sense of wellbeing and quality of life. There is also the possibility to improve relationships, reduce carer burden, and reduce the risk of a premature transition into a residential care setting. This paper explores some of the issues relating to dementia and continence and the impact as experienced by two case studies, Dhriti Singh and Gregory Brewin.

It is estimated that there are more than 14 million people in the UK experiencing issues with their bladder and around 6.5 million people who have bowel problems leading to incontinence, the effects of which can be debilitating (NHS England, 2018). However, it is suggested that figures may be an underestimation due to people failing to report symptoms as a consequence of stigma and feelings of humiliation (Hagglund and Wadensten, 2007). Urinary and faecal incontinence are common in the older population, although incontinence is not a normal part of ageing (Spencer et al, 2017). Despite this, older people, their families and carers often consider it inevitable, irremediable, and ultimately a sign of incompetence (Gove et al, 2016). People with dementia may already feel stigmatised by their dementia diagnosis, and it is likely that there is an underreporting of continence issues in people living with dementia due to fears of further stigmatisation (Drennan et al, 2013; Gove et al, 2016).

Urinary incontinence can have a significant detrimental impact on a person’s quality of life and social functioning and is associated with adverse health outcomes such as falls, depression, and urinary tract infection (UTI) (Wagg et al, 2019). Moreover, incontinence can play a significant factor in decisions to move a person with dementia into residential care (Hope et al, 1998; Luppa et al, 2008; Alzheimer Europe, 2014). This is often a result of the distress and sense of burden that can be caused by incontinence to both the person with dementia, their families and carers, but equally as a result of the extra support that is needed to manage the symptoms (Alzheimer Europe, 2014).

There is a misconception that urinary incontinence is a symptom of dementia. Urinary incontinence may be concurrent with dementia, although cognitive impairment alone may not be the cause of urinary incontinence particularly in the earlier stages of dementia. However, there is increased prevalence of incontinence as dementia progresses into the advanced stages (Harwood and Cowan, 2021). Dementia rarely travels alone due to high levels of multimorbidity, so incontinence may be as a result of another comorbid condition, such as diabetes, cardiac failure, degenerative joint diseases and arthritis, chronic lung disease, Parkinson’s disease, depression, stroke and normal pressure hydrocephalus (Alzheimer Europe, 2014).

URINARY INCONTINENCE

There are four types:

• Stress incontinence
• Overflow incontinence
• Overactive bladder
• Functional incontinence (Wheatley 1982) (Table 1).

Table 1. Four types of urinary incontinence.

Functional incontinence is considered to be associated with impaired cognition and is caused by immobility, communication difficulties, disorientation, or an inability to find the toilet, rather than abnormalities of the bladder (Harwood and Cowan, 2021). Consequently, given people with dementia experience many of these causative factors, they may be affected disproportionately by functional incontinence to those without dementia (Byles et al, 2009; Gove et al, 2016).

Although it is important to recognise that older people with dementia can experience other issues with continence, it must not be assumed that they are experiencing functional incontinence and any other causal factors of their incontinence should be assessed appropriately (Harwood and Cowan, 2021). Medications may also be a contributory factor. Cholinesterase inhibitor drugs prescribed for Alzheimer’s disease, such as donepezil and rivastigmine, can cause or negatively impact on existing continence issues (Garg et al, 2015). Similarly, medications such as oxybutynin prescribed for an overactive bladder, can also cause cognitive impairment, particularly when a person is subject to polypharmacy and anticholinergic burden (Reppas-Rindlisbacher et al, 2016). Alzheimer Europe (2014: 16) state that:
 
Therefore, it is important to consider the biopsychosocial causes and impact as part of holistic assessment rather than seeing dementia and continence in isolation of each other.

FAECAL INCONTINENCE

Faecal incontinence can have many underlying causes. The National Institute for Health and Care Excellence guidance (NICE, 2014) acknowledges that healthcare professionals may make assumptions that faecal incontinence is related to a pre-existing condition or disability, such as cognitive impairment, without carrying out a full assessment. People with dementia are four times more likely to be diagnosed with faecal incontinence compared to those without dementia, with care home residents being disproportionately affected with prevalence rates of between 30–50% (Goodman et al, 2015).

As with urinary incontinence, the cause may be functional. However, there remains the need to consider whether there are any treatable causes or factors that might be impacting on a person’s altered bowel movements.

Loose stools could be caused by overflow due to constipation, or the side-effects of medication, laxative use, antibiotic therapy, or dietary intolerances, all of which can be improved with changes to diet and prescribed medication (Goodman et al, 2015). Importantly, an altered bowel movement should be assessed and investigated, as the person may have other undiagnosed conditions affecting their bowel.

IDENTIFYING AND ACKNOWLEDGING THE SIGNS  

Given the detrimental effects that both urinary and faecal incontinence can have on the person with dementia, their families and carers, there is a need to ensure that incontinence is identified swiftly so that a timely and effective assessment can be undertaken. Incontinence can have negative physical health consequences but can also compromise a person’s dignity and their emotional and psychological wellbeing, affecting their mood, quality of life and relationships (Cole and Drennan 2019). As there may be reluctance or stigma associated with the person with dementia reporting episodes of incontinence, it is important that families and healthcare professionals are aware of the possible cues and clues that may indicate a person with dementia is experiencing difficulties in managing continence. Table 2 identifies some of the signs to look out for.  
 

It has been highlighted that there is a lack of knowledge and training in relation to incontinence in dementia (Alzheimer Europe, 2014), with Wagg et al (2008) suggesting a propensity for healthcare professionals to provide continence pads to older people as a first action, rather than assessing and treating any underlying causes. Family carers have suggested that when they seek support from GPs and other healthcare professionals, advice is not always helpful or effective, with inconsistent access to continence products and a lack of understanding of the needs and impact on carers when considering which continence products might be appropriate (Drennan et al, 2011). However, there are opportunities to improve outcomes for people with dementia, their families and carers by undertaking thorough assessment and considering strategies and investigations to reduce the negative impact that episodes of incontinence may have. There is a need to consider continence within a wider holistic assessment of needs, as the person may be reluctant to disclose their concerns. Asking if they have any issues and creating an environment where they feel safe and reassured is the first important step.  

Table 3 suggests some points to think about when assessing the needs for people with dementia in relation to any issues with continence. If the incontinence is a new phenomenon, it is important to consider whether there is an underlying acute and treatable illness that is causing it, such as a UTI which should be investigated and confirmed by dipstick and cultures (Harwood and Cowan, 2021). However, to determine other potential causes of incontinence a person with dementia should be offered an assessment with someone appropriately trained in discussing and assessing issues with continence, and a consultation with a doctor for an examination and possible onward referral to gynaecology or urology, for example, if considered appropriate (Alzheimer Europe, 2014).  
 
This paper will now explore how issues with incontinence may manifest themselves through the lenses of the two case studies.  

Family carers  

Gender can be an issue in the provision of personal care, with male family carers feeling uncomfortable or unsuitable to provide care in some circumstances, such as for their mother or female partner (Drennan et al, 2011; Gove et al, 2017). Family-caregiving is predominantly an activity undertaken by females, although, as a consequence of changing demographics, family structures and roles, an increasing number of men are taking on the role of primary caregivers (Baker and Robertson 2008; Sharma et al, 2016), as is the case with Arjun and Dhriti.  

Although it is inferred that men approach caring roles differently, there has been less attention paid to examining their experiences, especially in providing intimate care (Sharma et al, 2016). However, no matter what the gender of the person with dementia or the family carer is, incontinence can have a detrimental effect on relationships, with couples reporting that it can impact negatively on their physical attraction, affection, and intimacy (Gove et al, 2016). This might be due to the person with dementia needing support with intimate personal care, which may lead to changes in the roles within the relationship (Drennan and Cole, 2009; Gove et al, 2016), as well as practical barriers, for example, the need to sleep in separate beds. 

Furthermore, there may be increasing demands on carer’s time because of needing to deliver personal care, an increase in household chores, such as laundry and cleaning, and sleep disturbances caused by nocturia (Gove et al, 2016). Therefore, delivering continence care can have a detrimental emotional, physical, and psychological impact on carers, with many reporting that they feel ill-equipped to do so. This demonstrates not only a clear need for support in managing continence issues, but also greater sensitivity and understanding from health and social care practitioners (Alzheimer Europe, 2014). Yet, family carers consider that continence assessments are too brief, and fail to take into account the impact on them both in terms of meeting the practical demands as well as the emotional effect of managing incontinence (Upton and Reed 2005; Drennan et al, 2011; Kyle 2012; Gove et al, 2016).

A person with dementia may wake up during the night and be disorientated and in searching for the toilet for so long, end up wetting their clothes. This, coupled with nocturia, could lead to a person urinating in inappropriate places, such as in a wardrobe or plant pot, which might be the case with Gregory. People with dementia can have difficulties in recognising when their bladder is full, which impacts on their ability to gauge or anticipate when they need to void their bladder. This may also lead to them voiding their bladder inappropriately as they are unable to exert a delay in voiding (Si Ching, 2017). This can be misinterpreted as a wilful or resistive act — a ‘behaviour that challenges’, perhaps leading to an increased risk of transfer into a residential setting (Alzheimer Europe, 2014). However, the impact of functional incontinence is remedial if the correct steps are taken to address some of the barriers that affect a person with dementia’s ability to get to the toilet.  

In Gregory’s case, it might be advisable to place a nightlight between his bedroom and the bathroom so that he can get his bearings when he wakes up in the night, or if the toilet is too far away consider placing a urine bottle or commode near to his bed. It appears that Gregory does wake before he passes urine as his bed is not wet or soiled, indicating that his environmental factors should be considered in the first instance, before a need for any specific continence aids.  

CONCLUSION  

Incontinence can be debilitating, stigmatising, and is often considered to be humiliating by those who experience it. People with dementia do not feel the negative effects of incontinence any less than people without dementia do. There is a need to dispel the myths associated with dementia and continence to ensure that people with dementia, their families and carers, access the right support and guidance to minimise any negative impact incontinence may have on their lives. This means recognising that incontinence is not a symptom of dementia until the latter, more advanced stages of the disease progression, acknowledging there are things that you can do if a person with dementia experiences episodes of incontinence, and that family carers do not always know what to do, so need support and advice. While continence aids, such as pads, might be part of the solution for some, they should not be considered the only option — maintaining a person’s dignity should always be the priority.