Managing incontinence in people with dementia

It is estimated that there are 850 000 people living with dementia in the UK (Royal College of Nursing (RCN), 2015), and one in every six people over the age of 80 years have dementia (RCN, 2015). It is important to view these numbers in context, because, overall, the UK population is ageing: one in five people in the UK are over the age of 65 years, and, by 2050, this number is projected to increase to one in four (Office for National Statistics (ONS), 2019). Dementia is often a condition of old age, and, with the change in the make-up of the UK population, its incidence is bound to increase.

Some 53% of people with dementia have incontinence, whereas only 13% of those without dementia experience this problem (Price, 2011). This is a large variance, especially as the prevalence of urinary and faecal incontinence is 1% in the general population (Price and Bradley, 2013; Bardsley, 2016). The nature of dementia makes assessing a patient's incontinence needs far more challenging, as the causes of incontience in this patient group are multifactorial.

This article looks at incontinence in those with dementia, examining how dementia can adversely affect incontinence, and it suggests some strategies for helping to manage it.

Nature of incontinence

Urinary incontinence can be classified into seven types (Bardsley, 2016), as follows:

• Stress urinary incontinence: this occurs when an amount of urine is pushed out of the bladder due to exertion, for example, during sneezing, laughing or coughing
• Urge incontinence: urine is leaked from the bladder with a sudden and strong sensation to void the bladder, which cannot be deferred or controlled
• Mixed urinary incontinence: this is when a patient has both stress and urge incontinence
• Overflow incontinence: this is due to urinary retention. A patient cannot fully empty their bladder, and it becomes over-extended. This results in frequent or continuous leakage of urine
• Nocturnal enuresis: a patient will involuntarily leak urine during the night, when sleeping. Sometimes this is referred to as ‘bed wetting’. It can affect older patients and is sometimes associated with an overactive bladder, sleep apnoea or certain medication
• Reflex incontinence: this occurs when a patient has lost partial or complete control over their bladder, due to neurological damage, disease or a congenital abnormality
• Functional incontinence: this indicates that a patient is not able to reach a toilet because of physical or cognitive impairment.

In addition to these, there is also post-micturition dribble, which is when there is leakage of urine after voiding. It is not secondary to urethral stricture or bladder overflow, and it is most commonly found in men aged more than 50 years (Robinson, 2008). Although not technically a type of incontinence, it can be mistaken for the latter.

Urinary incontinence can also be due to other comorbidities, such as diabetes mellitus; heart disease; multiple births; neurological conditions, such as brain or spinal cord injury, Parkinson's disease or multiple sclerosis; arthritis, leading to impaired mobility and dexterity; and obesity, which places pressure on the pelvic floor and bladder (Bardsley, 2016).

It might be assumed that a patient with dementia will have functional incontinence, but this is not always the case. People with dementia may experience another type of incontinence or incontinence secondary to a comorbidity and might have functional incontinence in addition to these problems. This is why assessment is vital for incontinence management.

In most cases, faecal incontinence is a symptom of another condition (Price and Bradley, 2013), although a functional element to it must not be ignored. Price and Bradley (2013) identified the following conditions for which faecal incontinence could be a symptom:

• Constipation or faecal impaction, and overflow from this
• Loss of neurological control of defecation, including cognitive control
• Loss of the muscle control of defecation, including sphincter control
• Infection that causes diarrhoea, such as norovirus
• Medication with a side effect of diarrhoea, such laxatives, antibiotics, nonsteroidal anti-inflammatory drugs (NSAIDs) and medications used in type 2 diabetes, such as metformin.

Effects of ageing on continence

Like all other body parts, the urinary system is negatively affected by age. With age, the kidneys become smaller, they filter urine at a much slower rate and their ability to concentrate urine also declines (Nazarko, 2015a). Ageing decreases the bladder's capacity to hold urine and decreases its elasticity, leading to residual urine in the bladder after voiding. Older people become less aware of the desire to void and may only become aware that their bladder needs emptying when it is 90% full (Nazarko, 2015a). In women, the decrease in oestrogen following menopause causes the urethra to become thin and less flexible, which causes decreased closing pressures leading to stress incontinence (Nazarko, 2015a).

Complications of incontinence

Being continent is one of the cores of human dignity. It is one of the first things that a child is taught, and not to be so is seen as a great shame and embarrassment in society. Incontinence leads to feelings of embarrassment and abnormality, low self-esteem, stigma and even depression (Payne, 2015). It cannot be assumed that those with dementia do not feel these negative emotions associated with incontinence or that their dignity remains intact. Managing a patient's continence can restore their dignity, no matter what their cognitive state.

Poor continence can cause incontinence-associated dermatitis (IAD) (Yates, 2017). This is a painful, red rash caused by prolonged exposure of the skin to urine and/or faeces. Further, it can lead to a patient being at risk of a urinary tract infection (UTI) (Yates, 2017). In 2018–2019, the NHS saw 99 270 hospital admissions for UTIs (NHS Digital, 2019), not counting the number treated in primary care. UTIs can be a serious and life-limiting infection, especially in older adults.

Nature of dementia

Dementia is not one condition but more an umbrella term for a variety of conditions, mainly neurological, that affect a person's brain function (Robinson, 2018). It is commonly caused by the following conditions:

• Alzheimer's disease: this is the most common cause of dementia, affecting up 75% of dementia patients
• Vascular dementia: this is the second most common cause of dementia. It compromises blood supply to the brain, causing brain cell damage
• Dementia with Lewy bodies: this is the cause of dementia in 10% of cases and is similar to Alzheimer's and Parkinson's diseases
• Mixed dementia: this is when the dementia is caused by more than one factor, the most common being Alzheimer's and vascular dementias
• Huntington's disease, Creutzfeldt-Jacob disease and human immunodeficiency virus-related dementia: these are less common dementias (Dening and Babu Sandilyan, 2015).

How dementia can affect continence

The cognitive symptoms of dementia can affect on a patient's ability to manage their own continence. Dening and Babu Sandilyan (2015) identified various cognitive symptoms of dementia that affect a patient's ability to toilet themselves.

Patients with dementia may have amnesia and forget that they need to use the toilet, where the toilet is or even how to use a toilet themselves. Some may have aphasia, where they forget how to express their need to use the toilet, forget what the urge to empty their bowel/bladder is or forget how to ask for help.

Patients with dementia and apraxia have difficulty with conducting certain actions, and they may forget how to use a toilet, how to unbutton and button their clothing or even how to open a door. Lastly, they might experience agnosia, that is, they might lose the ability to recognise sensory information. A patient might forget what the physical sensory of needing to void is; their bladder/bowel maybe sending the sensation to be voided, but the patient no longer recognises what that means.

Assessment

The foundation of managing a patient's incontinence is a good, thorough continence assessment. Although a patient with dementia may not be able to fully take part in the assessment, they should be involved as much as possible. Spouses, relatives and/or carers should be involved in a continence assessment, and care should be taken to make sure that the patient's views and experiences are assessed, and not just what others think of them. National Institute for Health and Care Excellence (NICE) guidelines (2018) stressed that, even if a patient has dementia, their views about their own care must be considered. If needed, modified ways of communicating should be used, such as using simplified language, visual aids or simplified text (NICE, 2018).

A continence assessment should include the following:

• A medical history (see comorbidities and the nature of incontinence)
• Medication review
• Is there a pattern to the patient's incontinence? (does it occur at certain times of the day, does it occur at night only, does it occur if the patient is left alone for long periods, does it occur if they are not assisted to the toilet?)
• Is it urinary or faecal incontinence, or both?
• What is the volume of urine and/or faeces passed? Is the patient passing small amounts because they cannot reach the toilet on time, or are they passing full amounts and are they unaware of the need to void?
• What is their bowel pattern? Even if they only have urinary incontinence, a full or constipated colon can press on the bladder
• What is the effect of their incontinence on their daily life, their general health and their carer's ability to manage it? (Payne, 2015).

Bladder diary

A bladder diary can be very useful for continence assessment. These documents can reveal patterns to a person's incontinency and highlight when they are most likely to be incontinent. They can also provide an indication of a patient's fluid intake, the daily volume, type and times of fluid intake (Payne, 2015), from which patterns can be identified. For instance, even if a person is incontinent, it needs to ensured that they are drinking adequate amounts of fluids each day, and these need to spread out over the day rather than consumed in a short period.

It is important to note that many patients with dementia may not have the cognitive ability to keep a bladder diary, and this is when spouses, relatives and/or carers can be extremely helpful in keeping the bladder diary and helping manage the patient's continence. With the limited amount of time a community nurse spends with a patient doing a continence assessment, spouses, relatives and/or carers can provide the continuity that it is not possible for community nurses to.

Examination

Bardsley (2016) recommended two physical examinations as part of continence assessment: a urine dip test and a bladder scan or in-and-out urine catheterisation.

A urine dip test can show signs of a UTI (leukocytes or nitrites), kidney inflammation (nephritis), hydration (specific gravity) and diabetes (glucose and ketones) (Institute for Quality and Efficiency in Health Care, 2017), all of which can cause urinary incontinence.

A hand-held bladder scanner or in-and-out urine catheterisation post-voiding can show if there is any incomplete bladder emptying and urinary retention (Bardsley, 2016). Unfortunately, not all community nurses have access to or are trained to use hand-held bladder scanners, and an in-and-out catheterisation may be too disturbing for a patient with dementia. If it is suspected that a patient is not completely emptying their bladder on voiding, further help may need to be sought, such as from the bowel and bladder team.

Red flag warning

Community nurses must be aware of ‘red flag’ symptoms that may indicate that a patient's incontinence is caused by a more serious underlying problem, such as prostate cancer, bladder cancer or rectal cancer (Bardsley, 2016). Box 1 lists red flag symptoms of bladder and renal cancer, while Box 2 lists these for rectal cancer.

Box 1.Red flags for urinary incontinence
Note: If a patient has these symptoms or may have them, they need to be urgently reviewed by their GP (Bardsley, 2016). UTI=urinary tract infection

Note: If a patient has these symptoms or may have them, they need to be urgently reviewed by their GP (Bardsley, 2016). UTI=urinary tract infection

Box 2.Red flags for faecal incontinence
Note: If a patient has these symptoms or may have them, they need to be urgently reviewed by their GP.

Note: If a patient has these symptoms or may have them, they need to be urgently reviewed by their GP.

(Price and Bradley, 2013)

Management strategy

It is very important to involve a patient's spouse, relatives and/or carers in planning a management strategy for those with dementia and incontinence (Robinson, 2018), as these will be the people who will be implementing the strategy on a daily basis. Of course, the patient should be involved in this as much as they are able to as well (NICE, 2018).

Promoting a toileting pattern/habit maybe helpful in keeping a patient with dementia continent, for example, taking them to the toilet after breakfast, when the gastro-colic reflex is strongest (Nazarko, 2013). Bardsley (2014) recommended using the information from the bladder diary to draw up a toileting scheme for the patient. Any patterns of their incontinence should be identified, and a scheme should be drawn up to take the patient to the toilet at these times. Timed voiding (taking a patient to the toilet at certain times) and prompted voiding (prompting a patient to use the toilet on a regular basis) can help form habits and help to retain continence (Bardsley, 2014).

Medications can be used to help ease some symptoms of incontinence, such as urge and stress incontinence. Box 3 provides examples of some of the medications that are used to manage incontinence. However, it should be kept in mind that these medications only ease or dampen the symptoms of urge and stress incontinence, and they may not be appropriate for the complicated incontinence often found in patients with dementia. Before considering medication, specialist advice, such as that provided by the bladder and bowel team, should be sought, especially if this is outside the nurse's area of expertise.

Box 3.Medications used for incontinence

Price, 2011

Incontinence pads are often used for patients with dementia, but this does not mean that they will always fail to be continent. A patient's dementia and continence needs may be so severe or complex that incontinent pads are the best strategy for them, and prompting voiding and/or medication may just not be appropriate. Incontinence pads may be the best option because the goal of continence management should always be to keep a patient dry and to reduce the risks of incontinence.

Disposable incontinent pads come in three main styles: insert pads, wraparound pads and pull-up pads (Payne, 2015) (Table 1).

• Insert pads: these are pads that are worn inside underwear or specially designed pants. They require a degree of dexterity and mobility to change them
• Wraparound pads: these are an all-in-one style of pad. They have an absorbent core and wrap-around sides that hold them in place, usually with adjustable fastenings. These pads can be very absorbent, but are very bulky
• Pull-up pads: these are designed to resemble underwear, with an absorbent pad and elasticated waist, which can be pulled up and down. They are often popular with patients because they resemble underwear, but they are the most expensive, pad-for-pad, and only absorb small amounts of urine. Many trusts no longer provide these pads for these reasons (Payne, 2015).

Reusable incontinence pads are also available, in all styles, from underwear inserts to bedsheets, but they require laundering after each use (Nazarko, 2015b). Before supplying them, consideration should be given to who will launder them. The patient may not be able to, and there are concerns of cross-infection if it is done by a relative and/or carer. Reusable pads are not suitable for patients with heavy incontinence or those who are doubly incontinent (Nazarko, 2015b).

Many patients have used sanitary pads to manage incontinence, but sanitary pad manufacturers do not recommend this (Hall, 2018). Sanitary pads are designed to manage menstrual fluids and not urine; they are not absorbent enough to handle urine and can leak urine by design. Further, they offer no skin protection from urine, and they do not control the odour from urine (Hall, 2018).

The RCN catheter guidelines (2019) stated that patients should not be catheterised for convenience. A patient should not be catheterised just to make continence management easier, because of the increased risk of UTI that it poses. The guidelines do state that a catheter can be used to maintain skin integrity (RCN, 2019). In severe cases of IAD, nonhealing sacral wounds or pressure ulcers, a catheter can be used to protect the skin from urine and aid wound healing. Once the wound has healed, the patient's continence needs should be reassessed.

Care plans can be very useful for patients with dementia (Robinson, 2018). With formal carers, a care plan may be required by the care agency if changes in a patient's care are required to meet their continence needs. A written plan may also be useful for spouses, relatives and informal carers, but this should be written with them and not for them (Robinson, 2018). Carers, whoever they are, need to be involved in plans for meeting a patient's needs because they will be the ones delivering the care. However, when working with any informal carers, community nurses should be aware of signs that the person is finding the role challenging or is facing burnout (Robinson, 2018). Caring for a patient with dementia can be very stressful, and the community nurse might be the only health professional the informal carer has contact with, or the patient's continence may be the last thing the informal carer can cope with.

Conclusion

Continence is a very important part of human dignity. Incontinence is seen as a source of shame and embarrassment, and can have severe complications, both physically and emotionally. Community nurses can play an active role in easing these complications and giving people back their dignity.

A patient with dementia who is also incontinent does present with challenges that must be overcome to manage their incontinence. With time and knowledge, a community nurse can make a considerable impact on the quality of life of a person with dementia. Dementia should not automatically preclude a person from good quality of life.

KEY POINTS

• The incidence of dementia is on the rise with the corresponding increasing in the ageing population
• People with dementia are four times more likely to have incontinence than those without it
• Cognitive impairment can cause incontinence, but it can be caused by many other factors, which also affect people with dementia
• A thorough and systematic continence assessment is foundation of good continence management

CPD REFLECTIVE QUESTIONS

• List the challenges of continence assessment in those with dementia
• Why should sanitary pads not be used to manage incontinence?
• When should a catheter be used to manage incontinence?