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Guidelines

Continence care

1       Guidelines

The following guidelines are targeted at a wide audience (e.g. health and social care professionals, carers, people with dementia and policy makers) and divided into three key themes: 1. detection, 2. continence assessment, 3. management of continence problems.

Unless otherwise stated, the guidelines are targeted at any person actually or potentially involved in the detection, assessment or care of people with dementia and continence problems living at home.

Over-riding themes:

  • People with dementia should have the same rights as people without dementia to the detection, assessment and management of continence problems.
  • Continence care and treatment should be provided in accordance with the needs of carers and people with dementia. The aim is to try to do what is best for the person with dementia and avoid doing harm. This must take into consideration their individuality, promote autonomy, wellbeing and independent living through the provision of appropriate and individualised assessment and care.
  • People with dementia should be involved in decisions relating to all aspects of their assessment, care and treatment, irrespective of their level of capacity[1].
  • Care should be considered as an on-going dynamic process often requiring re-assessment.
  • A best interests, person centred approach should be ensured if the person with dementia lacks the capacity to make a particular decision about their care.
  • The correct procedure (i.e. in relation to proxy decision making) should be followed in situations where it has been established by relevant experts that the person with dementia lacks the capacity to make a particular decision about their care. This will differ in each country depending on national legislation covering decision making in the case of incapacity.
  • Measures should be taken to increase the awareness, training and education of professional and informal carers about continence problems experienced by people with dementia living at home.
  • The valuable role that many carers play in dealing with continence problems amongst people with dementia living at home should be acknowledged.

In relation to the above, the following European and international documents provide useful guidance[2]:

  • The European charter (1) of the rights and responsibilities of older people in need of long-term care and assistance (2010)
  • The European quality framework (2) for long-term care services: principles and guidelines for the wellbeing and dignity of older people in need of care and assistance (2013)
  • The United Nations (3) Convention on the Rights of Persons with Disabilities (2006)
  • The Council of Europe (4) Convention on Human Rights and Biomedicine (1997)

1.1      Detection

» Look for signs of continence problems

It is important to look for signs of continence problems as some people with dementia and their carers hide such problems or are reluctant to consult a doctor. There are several possible reasons for this, including:

  • embarrassment, shame or perceived stigma,
  • lack of knowledge regarding care options,
  • a perception that incontinence is normal with dementia or ageing.

Some people with dementia may be unaware that they have continence problems or have difficulty communicating the problems they are experiencing in relation to it. Although there could be other reasons, the following signs might indicate difficulties maintaining continence or dealing with incontinence:

The person with dementia may:

  • spend a long time in the toilet,
  • have lower urinary tract symptoms (e.g. frequent urination, rushing to the toilet to urinate, hesitancy, itching, “after dribble” and pain),
  • be getting up to pass urine more frequently at night (nocturia) (perhaps accompanied by daytime sleeping),
  • change his/her clothes frequently or at unusual times,
  • use sanitary towels (in the absence of menstruation),
  • not want to go out, particularly to unfamiliar places,
  • be reluctant to drink or eat,
  • sometimes vomit or have pain (this can happen with severe constipation),
  • use natural remedies (e.g. against diarrhoea or constipation),
  • have soiled laundry/stained underwear,
  • be restless, agitated or anxious,
  • have poor hygiene routines.

You notice:

  • wet patches or stains on furniture,
  • soiled laundry and toilet paper in strange places (perhaps hidden or forgotten),
  • unpleasant smells,
  • a mess in the bathroom/toilet,
  • a change in frequency of elimination (a person should normally pass faeces between 3 times per day and 3 times per week, and urinate about 6 or 7 times a day[3] but there are considerable differences in how often people go to the toilet).

» Ask

Carers:

If you notice any of the above signs, ask the person with dementia about them and about any difficulties they might be experiencing in relation to continence (provided this would be appropriate based on your personal relationship to the person with dementia).

GPs:

GPs should adopt a proactive approach to the identification of continence problems amongst people with dementia and keep a record of cases. They should ask about continence when a person is diagnosed with dementia and from time to time thereafter. If an older person is diagnosed with incontinence, GPs should ask about possible symptoms which might suggest the need for an assessment for dementia.

In general:

Approach the topic of continence problems with great sensitivity and with consideration for the feelings and psychological wellbeing of the person with dementia (and in the case of health and social care professionals, also of their carers).

If the person with dementia is unable to understand or respond, consider whether it would be appropriate to ask their carer or another relevant person.

Do not avoid the topic of continence problems solely on the grounds that it is a sensitive topic or that it is perceived as a social stigma.

» Contribute towards raising awareness and challenging stigma

Stigma may be experienced by the person with dementia and continence problems but also by relatives and close friends due to their association with them. Many people with dementia who live at home have limited contact with health and social care professionals who might otherwise notice signs of continence problems

Raise awareness about continence problems experienced by people with dementia living at home, emphasising, for example, that:

  • continence problems may be linked to dementia,
  • in the early and mild stages of dementia, continence problems are often related to problems with mobility, finding the toilet and toileting skills and these factors can sometimes can be improved or resolved.In severe dementia, incontinence is the inevitable consequence of complete care dependence and loss of cognitive function,
  • continence problems can have a social, psychological, emotional and economic impact on the lives of those who experience it and on their families, friends and carers,
  • continence problems can in many cases be successfully treated or managed (please see section 1.3),
  • with appropriate care, people with dementia who have continence problems should be able to continue to enjoy a good quality of life within the community.

Challenge the stigma of both conditions and empower people with dementia and their carers to do likewise.

Table 1: Challenging the stigma of dementia and continence problems

  • Avoid reducing people to either condition by the way you refer to them or by focusing solely on continence problems or dementia.
  • Avoid stereotypes of dementia and/or continence problems (e.g. the stereotypes of advanced dementia, of all people with dementia being incontinent and of people with dementia having no quality of life).
  • Bear in mind that anyone can develop dementia or continence problems and that people with these conditions and those without are all part of the same society.
  • Realise that men and women of all ages can experience continence problems and that this can in many cases be effectively managed or treated. It is not something to be ashamed of and does not make a person any less valuable.
  • Ensure that people with dementia and continence problems benefit from the same level of respect, care, treatment and participation in society as that granted to other people.
  • Challenge any form of discrimination against people with dementia and continence problems (e.g. factors which limit their full participation in society, result in social exclusion or result in devaluation or loss of social status).
  • The continence care of people with dementia living at home necessitates an interdisciplinary approach. Awareness raising should also be targeted at health and social care professionals as many lack the necessary knowledge and expertise.

» Be proactive

Carers and people with dementia:

Be aware that incontinence can be part of dementia, especially in advanced dementia, but do not consider it is as inevitable as much can be done to help people with dementia retain continence and independence as long as possible.

Speak out and seek help when needed.

Insist on an assessment when experiencing continence problems. Talk to your GP about this.

Try to break the vicious circle of stigma by addressing continence problems in a pragmatic and direct manner. This may help others to do likewise.

Consider the possible benefits of writing an advance directive or statement of values whilst you (the person with dementia) have the capacity to do so in which you indicate your preferences and wishes regarding your future care. This should be done in the context of on-going advanced care planning (rather than a one-off conversation) and with the help of a healthcare professional. These documents do not have to be limited to end-of-life decision making and can be helpful to people who would like to respect your wishes.

Health and social care professionals:

Discuss the issue of advance care planning with people with dementia whilst they still have sufficient capacity to participate actively in such planning.

Ensure that you seek appropriate consent to engage in anticipatory care planning

Ensure that you have the appropriate education and training in anticipatory care planning for people with dementia.

1.2      Continence assessment

1.2.1    Initial continence assessment

A continence assessment is initially undertaken for the following reasons:

  • To identify potentially reversible causes and contributing or aggravating factors,
  • To determine the need for further investigation or specialist referral,
  • To develop a personalised management or treatment plan for the person involved.

There are a number of people who could conduct an initial continence assessment. Depending on the country in which the assessment is made, this might, for example, be a GP, a continence nurse advisor or a nurse practitioner specialized in incontinence. The most important thing is that the assessment is made by a healthcare professional who is specially educated in incontinence and has the ability and responsibility to direct people to the right specialists if needed. For more information about the optimal care pathway for people with incontinence, please see the Optimum Continence Service Specification[4].

A person with dementia could also be referred to the following professionals:

  • a urologist – specialist in the field of bladder problems, prostate problems and male sexual organs,
  • a urogynaecologist – a specialist in the field of women’s bladder and reproductive organ problems,
  • a neurologist – a specialist who deals with the nervous system throughout the body,
  • an elderly care physician – a specialist in the field of medicine for elderly people.

» Involve people with dementia and carers in the assessment as far as possible

People with dementia and carers:

People with dementia (or their carer if necessary) who go to see their GP about continence problems should tell or remind the GP that they have dementia. If referred to a specialist, they should also inform the specialist that they have dementia in case the GP has not already done so.

Health and social care professionals:

People with dementia who are experiencing difficulties with continence should be offered a continence assessment and, for those in the older age group, a comprehensive geriatric assessment.[5]

People with a subjective memory complaint or mild cognitive impairment, who have not been diagnosed with dementia but are experiencing continence problems, should be offered a cognitive assessment.

The person responsible for conducting the first assessment should be informed of the person’s diagnosis of dementia.

Health and social care professionals should involve people with dementia and carers in the initial continence assessment as far as possible. In order to achieve this, they should ensure that their procedure and personal approach is adapted to the needs of people with dementia and their carers. If necessary, they should seek training in how to communicate with people with dementia.

Health and social care professionals involved in the initial assessment should:

  • start from the assumption that people with dementia should be involved in the assessment process for continence problems,
  • encourage the involvement of a carer or trusted person in the assessment process as a means of support (e.g. to provide information that the person with dementia might not be aware of, to support him/her in understanding, making decisions and communicating, to keep a record of what was decided and to be aware of the next steps),
  • be sensitive to the right of people with dementia to choose who should be consulted about their care. Respect their right to privacy and confidentiality. In some cases, this may be partly influenced by decisions made in the context of a power or attorney or guardianship measure,
  • not presume that a person with dementia is incapable of providing information and of explaining possible problems with continence,
  • not assume that the person with dementia lacks capacity simply because his/her decision seems unwise or unusual,
  • take measures to maximise the potential of people with dementia to communicate their needs, wishes and difficulties in relation to continence (see Box 2),
  • ask the carer if the person with dementia cannot understand or answer questions, or there are doubts as to the accuracy of the information provided,
  • give the carer the opportunity to comment if s/he is indicating that the responses from the person with dementia are incorrect,
  • find out if the person with dementia has an advance directive if they lack the capacity to consent to a particular examination which might eventually be proposed  and about carers’ needs, willingness to provide care and coping skills,
  • assess the level of dependency of the person with dementia on other people or home care services to achieve continence or deal with incontinence,
  • consider issues related to the accessibility/affordability of the assessment and any referrals.

Table 2: Measures to facilitate communication and support decision-making

  • Speak slowly and clearly but without exaggerating.
  • Maintain eye contact.
  • Find a quiet place with no distractions for the discussion.
  • Adapt your language to the perceived level of understanding of the person with dementia.
  • Give the person enough time to respond.
  • Ask one question at a time.
  • Avoid overloading the person with too much information at once.
  • Help the person to express what is currently important to them.
  • Feed information back to check that you have understood and to remind the person with dementia what has been said so far.
  • Use any relevant materials (e.g. objects, brochures and notes).
  • Look out for signs of fatigue, confusion or lack of concentration.
  • Provide reassurance, if needed, through appropriate touch, body language and tone of voice.

» Aim for equity in the assessment process.

A proper continence assessment, diagnosis and initial treatment for continence problems should be offered irrespective of whether a person has dementia, is advanced in age, lives alone or any other discriminatory criteria.

Start from the assumption that people with dementia should be eligible for any tests that would routinely be carried out, as well as for referrals. They should have the same right to consult a specialist for continence problems and have relevant examinations as any other person.

» Carry out a thorough continence assessment and ensure that there is follow up.

Health and social care professionals:

Ideally, assessments should be carried out by healthcare professionals with knowledge of both dementia and continence problems. The availability of healthcare professionals and services with specific expertise in continence assessment and management will vary from country to country.

Healthcare professionals should follow recognised guidelines on the clinical assessment of continence problems, which are officially recognised by the healthcare authorities in their countries. In the absence of such guidelines, European or internationally recognised guidelines may be helpful such as the ICI clinical guidelines, which are revised every four years and are for this reason up to date with the latest clinical findings. When carrying out an assessment, the following issues should be considered:

  • the type of incontinence,
  • the severity (i.e. is it a small or large amount of urine or faeces?),
  • current medication (an analysis of dosage, possible interactions),
  • the involvement of continence nurses/advisors (if available) who may be well placed to take on the role of case coordinator during the care pathway,
  • the need for referral to secondary care or a hospital specialist,
  • the need for continence products to support independence which meet the needs of the person with dementia and his/her possible carers,
  • The person’s medical, surgical, obstetric, urologic, gynaecologic, and neurologic history.

» Prepare yourself for a continence assessment or to accompany a person with dementia for an assessment or consultation in relation to continence issues

People with dementia and carers:

In order to determine the cause of factors contributing to continence problems, people with dementia should be offered a continence assessment/consultation to discuss these issues and for the doctor to examine them. The following information is intended to help people with dementia and their carers prepare for an assessment and know what to expect.

1) During this assessment/consultation, the person with dementia or carer may be asked about various symptoms (combinations of which might indicate more than one diagnosis) and for basic information about toileting habits.

  • Symptoms that may indicate stress urinary incontinence (SUI):
    • leakage on coughing/laughing/sneezing
  • Symptoms that may indicate an overactive bladder (OAB):
    • frequency (voiding >8x per day)
    • urgency – rushing to get to the toilet
    • urge incontinence (not making it to the toilet on time)
  • Symptoms of nocturia (getting up >1x at night to pass urine)
  • Symptoms that may indicate bladder outflow obstruction:
    • hesitancy (waiting some time before the urine flows)
    • poor stream (slow flow of urine)
    • incomplete bladder emptying (feeling the need to go again after having just been)
  • Symptoms that may indicate a recurrent urinary tract infection (UTI):
    • pain during urination
    • urine has a penetrating smell
    • an imperative/urge feeling
  • Symptoms that indicate problems with bowel elimination:
    • hard stools or long periods of time between opening bowels
    • pain
    • faecal leakage (liquid or normal stool)
  • The duration of the incontinence espisodes (i.e. whether the incontinence is considered transient or established),
  • The degree of incontinence (in terms of quantity and frequency),
  • The person’s toileting routine and diet (including foods which s/he includes or avoids due to continence issues).

2) The person with dementia or the carer may be asked about:

  • mobility - if getting about is difficult this may impact on reaching a toilet,
  • the ability of the person to manage tasks associated with toileting and maintaining continence, and the type and degree of any assistance needed to remain continent,
  • whether the level of support available is sufficient,
  • the impact of caring on quality of life and possible physical strain for carers,
  • clothing (some people with dementia find zips and buttons difficult),
  • cognition (the degree of cognitive impairment and whether there is any improvement with repetition or better understanding and awareness),
  • environmental factors (i.e. toilet visibility, distance, lighting, privacy and cleanliness),
  • the person’s emotional responses to continence problems and/or to being assisted to maintain continence or manage incontinence,
  • multiple medications (polypharmacy) – a medication review is essential including over-the-counter medications. Many drugs cause continence problems.
  • co-morbidity - many other medical conditions can impact on continence such as heart problems, diabetes, chronic cough, Parkinson’s disease and stroke,
  • fluid intake. You may be asked to fill in a bladder diary (see section 1.3.2),
  • food intake. You may be asked about what you eat and about how this might be contributing towards incontinence,
  • current use and type of continence products (e.g. pads/pant, protective underwear, commodes, etc.).

There are a few questions regarding symptoms which are associated with a need for a specialist urology or gynaecology referral. In particular, this includes cases where incontinence is associated with pain, there is blood in the urine or a mass in the abdomen or if the person has had previous pelvic surgery or radiotherapy treatment, or women who have a visible prolapse. If the person with dementia has any of these symptoms, it is essential that they see a specialist.

The following samples might be required:

  • blood,
  • urine,
  • stool.

As well as assessments of general functional and cognitive abilities, more specific physical examinations may be carried out:

  • examination of external genitalia – to check for skin infection, moisture lesions where skin is sore after being wet and/or obvious prolapse,
  • abdominal examination,
  • vaginal examination – for internal prolapse and to assess pelvic floor muscle strength,
  • rectal examination – for faecal impaction, mass in the rectum or in men a large or irregular prostate,
    • a neurological examination if there are obvious neurological signs such as limb weakness (e.g. leg weakness). Nowadays a portable bladder scan can be used to measure residual volume and can be used as a part of an initial assessment to exclude retention of urine or overflow incontinence.

Health and social care professionals:

Healthcare clinicians who are conducting the assessment should take care to weigh up the relative benefit of performing the examination and the person’s capacity to provide informed consent (or for a person who is authorised to do so, to provide proxy consent). The reason for caution is that unless the person with dementia can understand the rationale for a particular examination (especially a vaginal or rectal examination), they may interpret it as a form of abuse and find the experience distressing.

1.2.2    Specialist assessment

People with dementia and carers:

Depending on the doctor’s analysis of the information obtained from the above-mentioned assessments and examination, the person with dementia may be asked to have additional tests such as:

  • an ultrasound examination of the bladder or pelvis,
  • an X-ray of the abdomen to indicate a slow transit or faecal loading (especially if the person with dementia does not understand the rationale for the rectal examination),
  • a cystoscopy or cystography to allow the doctor to look at the interior lining of the bladder and the urethra,
    • urodynamic testing to measure, for example, the amount of urine and flow rate, the capacity of the bladder, bladder contractions, sphincter control and ability to empty the bladder completely. An example of such a test is the cystometrogram which measures how much the bladder can hold, the buildup of pressure and how full it is when the person feels the urge to urinate.

The above tests are not generally painful. Nevertheless, they may cause anxiety and stress to some people with dementia and this should be taken into consideration. Also, whereas some people may find them slightly embarrassing, others may find examination distressing if they do not understand fully why it is being done.

On a more practical level, the person with dementia may be required to follow instructions (e.g. to arrive for testing with a full bladder and to resist urinating until told to do so) and provide feedback during the test (e.g. regarding the urgency of their need to urinate or sensations in the bladder). This could be problematic for some people with advanced dementia. They may, for example, have difficulty understanding the initial instructions, remembering on the day to do what was requested, resisting urinating due to stress and a disruption of the notion of time, interpreting bodily sensations or communicating how they feel.

In addition, it may be necessary to find doctors and departments in different parts of a building or even in different buildings and this requires mobility, spatial orientation skills and the ability to remember and follow directions.

1.3      Management of continence problems

Once a type of incontinence or continence problem has been established, an action plan should be developed in a stepwise process (see Figure 1 below). This should involve the establishment of a coordinated care plan involving the person with dementia and all health and social care professionals (including allied professionals), as well as informal carers, providing dementia and continence care to a particular person with dementia. For this reason, although health and social care professionals play a key role in managing continence problems, the information in this section might also be helpful for people with dementia and their carers who would like to be informed about and involved in decisions relating to various treatment and care options which might be offered.

Figure 1: Stepwise process for continence care of people with dementia at home

This is a simplistic illustration of continence management. Containment products are specifically addressed in the section “environmental changes and lifestyle measures” but should be available, if needed, along all four steps to protect the person from leakage issues. People with dementia should be considered for all appropriate interventions where safe and possible. Management usually starts with conservative measures such as lifestyle measures and environmental changes and may progress, depending on needs and wishes, through the range of options depicted above. Before looking at each in more detail, we briefly consider general issues related to: ethical care, carer support and case coordination.

Ethical care

Continence care to people with dementia at home should be provided within an ethical framework of care. This includes, for example, the need to pay attention to:

  • involving people with dementia in care-related decisions as far as possible,
  • establishing a dialogue with everyone involved and whose participation might be helpful (whilst respecting privacy and confidentiality),
  • interpreting and making sense of the issue, the situation (as an on-going process rather than a one-off decision), the capacity of the person with dementia, the values, wishes and needs of both people with dementia and their carers, and the likely risks and benefits linked to respecting the wishes of the person with dementia,
  • considering ethical principles and values at stake as well as possible outcomes in relation to the lived experience of all involved,
  • paying particular attention to dignity, vulnerability and people with dementia existing as unique individuals but in most cases within a web of relationships.

Carer support

In many cases, people with dementia live with relatives and friends who are heavily involved in both dementia and continence care. Support for carers of people with dementia living at home must therefore be part of any strategy to manage continence problems. This should include practical, emotional and financial support, and respite depending on each carer’s needs. Carers should be given training and have a named person to whom they can turn in case of difficulty. Many carers of people with dementia are older and have their own health issues (e.g. problems with eyesight, mobility, arthritis and even life-threatening diseases which affect their ability to look after another person). Helping an adult to get to the toilet, get on and off the toilet and undo or fasten clothing, cleaning around the toilet area, washing the person with dementia and changing continence pads and bedding require physical and emotional strength, coordination, planning, dexterity and endurance. Any support provided must correspond to the real and current situation and needs of individual carers

Case coordination

Due to the complex and changing needs associated with both dementia and incontinence, it is essential to have one person with overall responsibility for the organisation and coordination of the continence care of each person with dementia living at home. In some countries, this is a recognised post (e.g. a case coordinator or case manager). In others, it is not but a health or social care professional fulfils that role. The person who acts as case coordinator, irrespective of his/her job title and other professional duties, should have the relevant expertise in both dementia and continence care and involve people with dementia and their carers in the development of a comprehensive care plan.

In the remainder of section 1.3, we provide more detailed guidelines on the management of continence problems in the different steps described above.

1.3.1    Environmental changes and lifestyle measures

Making adaptations within the home, using various devices and products to support mobility and help deal with continence problems, as well as paying attention to food, drink and personal hygiene often have a positive impact on the management of continence problems. These approaches are addressed below.

» Consider measures linked to the environment

People with dementia and carers:

Ensure that there are no obstacles which might make it difficult to reach the toilet in time (e.g. furniture blocking the way, chairs which are difficult to get up from, poor lighting, door which are hard to open and confusing designs on floors).

If the bathroom is too far away, consider reorganising the living areas within the home so that the distance is reduced.

Check that mirrors in the bathroom are not contributing towards the person with dementia thinking that someone else is there.

Ensure that the room in which the toilet is situated is easily recognisable. Consider a sign on the door (e.g. a realistic image, a symbol and/or words). As some people consider this inappropriate in the home, it is important to find one that fits in with the décor and is acceptable.

Consider putting a sign on the inside of the toilet door to remind the person where and why they are there.

Reassess from time to time whether the signs are still helpful.

Consider changing the colour of the toilet seat to one which provides a clear contrast to the pan of the toilet. Using a product to colour the water in the toilet blue might also be helpful.

Look into the possibility of obtaining the right to certain services for people with incontinence. Examples include a special key for the public toilets for disabled people which are kept locked, a public toilet finding device and an incontinence card which gives people access to toilets which are not open to the general public.

» Consider using assistive technology and products to promote independent toileting, safety and mobility

People with dementia and carers:

Consider using assistive technology (AT) and products designed to promote independence, safety and mobility. AT includes devices and systems which enable someone to perform a task more independently or with greater ease and safety. Box 3 provides a few examples of AT and other useful products.

Address problems with mobility and if possible treat or remedy them (e.g. through medication, AT, exercises or reorganisation of the home).

Keep any walking aids within easy reach.

Be aware that some people with dementia might not recognise or understand how to use some devices or products, however obvious it may seem and even if they used them in the past. This may sometimes lead to misunderstandings (e.g. the belief that the person with dementia is being awkward or uncooperative)

Table 3: Examples of assistive technology and products to promote independent toileting, safety and mobility

  • Devices to detect moisture or movement (e.g. to detect night-time accidents or getting out of bed).
  • Lighting devices which react to movement and light up certain areas automatically (bearing in mind that for some people, this might be confusing or disturbing).
  • Devices to signal for assistance.
  • Locks on toilet doors which can be opened from the outside in case of emergency.
  • Hoists and equipment or furniture to aid lifting.
  • Mobility aids (walking sticks and frames, grips and rails).
  • Raised toilet seats and seats for the bath or shower.

» Consider using continence products (to prevent or contain incontinence)

The first aim, when considering the use of continence products to prevent or contain incontinence, should be to keep the person with dementia independent from the care of others for as long as possible and to secure independence with maximum dignity as long as possible.

The needs of the carers(and their ability to provide support) should also be considered.

People with dementia and carers:

People with dementia (and/or their carers) should seek and be provided with information about the range of continence products available for preventing or containing incontinence[6]. These can be broadly divided in the following categories:

  • handheld urinals (different versions for men and women; urine bottles exist with a non-return value or granules in the bottle to make urine thick and less easy to spill),
  • commodes and bedpans (there may be concerns about lack of privacy, embarrassment, odour, the look of the object and the need for other people to empty it),
  • absorbent products (such as insert pads/pants, protective underwear and male pouches),
  • body-worn urinals (e.g. sheaths for men, exist for women but not widely available),
  • urine drainage bags (worn on the leg or body, or hooked to a stand),
  • catheters (indwelling catheters should not be the first or long-term choice. Catheters should not be used only for the convenience of the carers but when a person cannot empty the bladder and when medically required),
  • occlusive devices (to block/prevent leakage such as a special tampon for women or for men, a device to compress the penis),
  • plugs to prevent leakage of faeces,
  • devices to channel faeces into a container,
  • pads to contain faeces.

People with dementia may need time to come to terms with the psychosocial implications of using products to prevent or contain incontinence and should not feel guilty or be blamed if reluctant to use them.

Some products are more discreet than others and it is understandable that this is likely to influence choice. However, when selecting an absorbent product (e.g. a pad/pant or protective underwear), the extent to which it provides the level of protection (i.e. absorbency, odour) required, as well as the skin-friendliness of the product and its ease of use should be key considerations.

Health and social care professionals:

When proposing various containment products, be sensitive to what their use might symbolise to some people with dementia (e.g. in relation to dignity, control, adult status and the stage of dementia) and to possible fear linked to a perceived association between incontinence, advanced dementia and entry into a residential/nursing home.

People with dementia should be offered continence products that are appropriate for their specific needs, readily available and affordable, and which contribute towards the maintenance of independence.

Choice should not be restricted to products which have been preselected by healthcare providers based on criteria which are not linked to individual needs (i.e. that are solely based on tendering practices or costs) or are of the lowest quality. A “one size fits all” approach should be avoided.

Products that resemble typical underwear/pants should be available in addition to diaper-type solutions with tapes as the former tend to be more user-friendly for people with cognitive impairment and may make it easy for them to go to the toilet independently.

Health and social care professionals (ideally a continence advisor/nurse) should provide advice on the different options available, demonstrate how to use them if necessary and give advice on how to look after the skin, reduce the risk of infections linked to the use of certain products and dispose of pads. Brochures, DVDs and websites might, in addition, be helpful as they can be watched in private and when convenient.

A trained professional in continence care (such as a continence advisor/nurse) should be involved in continence assessments and the initial treatment, and should assist people with dementia in the choice of an appropriate containment product (if needed). Support should also be organised to enable the person to manage his/her continence whilst living at home.

People with dementia should have the opportunity to try different types, sizes, absorbency, quality of containment products in order to find those which are best suited to their needs (before investing in larger quantities of a particular product). This could perhaps be organised through day care centres, through the supply of samples and by continence advisors/nurses and general nurses.

People with dementia should not be encumbered with products that are not appropriate and might never be needed as this is wasteful and may be demoralising.

People with dementia may have difficulty planning orders of containment products. Greater flexibility may be needed, including the possibility for last minute orders and some external monitoring (e.g. home care service workers keeping an eye on supplies).

People with dementia should not be arbitrarily restricted to a predetermined number of containment products, especially continence pads (e.g. through the healthcare insurance or healthcare service). If a person needs more products because this corresponds to their needs, it would be unethical not to provide them and would represent a failure to respect his/her human dignity. On the other hand, some people use more pads per day than necessary and this could be considered as uneconomical, not ecological and putting a strain on carers. In case of uncertainty, consultation with a continence advisor/nurse or a person fulfilling that role, would be beneficial.

Producers and suppliers of continence products:

Producers and suppliers of products to prevent and contain incontinent should:

  • ensure that the product packaging is discreet, positive and easy to open,
  • make products available in small and larger quantities, 
  • consider the distribution of absorbent products (i.e. pads/pants and protective underwear etc.) in supermarkets, alongside other hygiene and sanitary products,
  • design emergency and travel kits for people with dementia and continence problems (e.g. discreet/pleasantly designed bags for men and women which they can separate from their main luggage when needed or carry separately, containing a pad, a plastic sealable bag for the used pad, hygienic wipes and cloths to wipe hands),
  • consult people with dementia and carers in the development of continence products,
    • consider developing innovative products, in terms of aesthetics, colour, material, ease of use and size in order to increase compliance and to target the specific needs of people with dementia and to promote independent living and social inclusion.

» Pay attention to diet and fluid intake

People with dementia and carers:

People with dementia (and/or their carers) should try to ensure that:

  • they have access to a sufficient amount of liquids and that they are drinking. Fluid intake is important in relation to both urinary and faecal incontinence. People with dementia may forget to drink, not feel thirsty or avoid drinking in an attempt to remain continent. Do not restrict drinks in general as a means to prevent incontinence as this can be dangerous but limit drinks two hours before sleeping,
  • they are eating a sufficient amount of fibre (e.g. whole grains, bran, raw fruit and vegetables). The Bristol stool chart[7] may be helpful in monitoring possible problems with intestinal transit,
  • they pay attention to their diet and particularly to fibre intake as a means to manage faecal incontinence.

» Take measures to promote hygiene

People with dementia and carers:

Establish general hygiene routines and skin protection (see Box 4[8]).

Take into consideration the capacity to maintain hygiene, the availability of support and the willingness of the person with dementia to accept outside help.

For some older people with mature skin, skin cleansers may be preferable to soap and water, when cleaning themselves after an accident, and some studies have found that this helps prevent incontinence-related skin problems (6). There are several products on the market (e.g. wash mousse and wash gloves) that are very skin friendly and can be used not only after an accident (either urinary or faecal) but as a general measure when cleaning the perineal area (the area between the anus and either the vulva or the scrotum).

Table 4: Maintaining good hygiene and protection the skin

  • Put on clean underwear every day.
  • Consider cotton loose-fitting underwear which does not have elastic around the leg area. However, if using continence pads, tighter fitting underwear is necessary to hold the pad in place.
  • To prevent irritation or damage to the skin, try to provide gentle cleansing (avoiding soap if possible) and avoid prolonged wetness and skin contact with urine or faeces and especially combined contact with both urine and faeces.
  • Keep the skin moisturized and apply a skin protection or moisture barrier.
  • If used, change continence pads/pants and protective underwear regularly.
  • Ensure the correct pad is used. This should be advised by a healthcare or social care professional with a good knowledge of both continence problems and dementia. Each person should be provided with a product which is best suited to their individual needs.
  • Regularly check the skin for possible damage, irritations or chaffing.
  • Avoid douching unless instructed to do so by a healthcare professional.
  • When wiping around the anus after having been to the toilet, wipe from front to back in order to minimise the risk of infection in other areas (such as the urethra and vagina for women).
  • At least once a day and always after urinary or faecal incontinence, wash the perineal area (the area between the anus and either the vulva or the scrotum).
  • To avoid damage to the skin in this delicate area, use warm water, a mild, unscented soap and pat dry. Do not rub or apply powder. If possible, avoid the use of soap. Impregnated wash gloves are skin friendly and may be easier to use as there is no need to rinse and dry.
  • Avoid scented toilet tissue.
  • Report any foul smell, itching or bleeding to a doctor.
  • Drink plenty of water to keep the urine less concentrated and well hydrated skin tissue.
  • Seek professional help if the person with dementia is unable to take care of their intimate personal hygiene, refuses assistance and you are concerned about their wellbeing or that you cannot cope.
  • If the person with dementia already has incontinence-associated dermatitis (IAD), contact a healthcare professional who will normally establish a treatment plan, which may involve “protecting the skin from further damage, establishing a healing environment and eradicating any cutaneous infection”. (8)

1.3.2    Behavioural measures

Most people, including those with dementia, wish to maintain independent bladder and bowel function and to go to the toilet at a time of their choosing, on their own and privately. However, people with dementia may at some point need assistance. The level of assistance needed will vary widely (e.g. some people may require prompting and others may require physical assistance). It is not easy for people to accept being assisted to use the toilet or to wear pads. Carers need to recognise what level of assistance is needed and when. This may alter from day to day.

» Recognise toileting needs and provide support if needed

People with dementia and carers:

Establish regular toilet routines, based on each person’s typical daily routine.

As people with dementia have different needs with regard to toileting (and may experience urgency), avoid sticking too rigidly to set toilet times (e.g. every three hours irrespective of the person’s needs and habits) [unless this is part of a training plan – see section on timed voiding below].

Try to ensure that assistance is available if and when needed. Some people have predictable times they need to go to the toilet. Others do not. However, most people, regardless of whether they have dementia, need to go to the toilet 4-6 times over 24 hours, and once at night if they are over the age of 60. Therefore, it might be helpful to prompt or assist the person with dementia (if they need this support) to go to the toilet when they wake up in the morning, after breakfast, around lunchtime, once in the afternoon, again in the evening and before bed.

Try to recognise and assess signs that the person with dementia may need to go to the toilet as perhaps s/he is unable to communicate the need or is not sufficiently aware of it and prompt the person to use the toilet using appropriate communication skills. Such signs might include a different posture, pulling at clothes, anxiety, restlessness, fidgeting or a worried expression. However, it is important to consider the possibility that some of these signs might for some people be an expression of pain of psychological distress.

To tailor assistance to individual needs, it may be helpful for the person with dementia (with the help of a carer if necessary) to keep a bladder diary. This records liquid intake and urine output (e.g. frequency, amount, urgency, accidents and circumstances surrounding any accidents). It is important to do this for at least three days, as any one day might not be typical. Each day should cover a full 24-hour period and start from the same time each day (e.g. from 08.00 one morning to 08.00 the following morning).

Respect the person’s autonomy by accepting his/her decision whatever that may be. If a person with dementia resists carers’ attempts to assist them to the toilet, carers should interpret this response as the person’s desire and right to maintain optimal independence.

Try to find trousers and underwear that are easy to undo or release (e.g. Velcro or elasticated waists) in order to reduce the likelihood of accidents occurring due to unnecessary delays. However, the individuality, dignity, comfort and right to self-expression of people with dementia should be respected.

Ask a doctor or continence nurse/advisor about different types of exercises and training to help prevent accidents such as timed voiding, prompted voiding, bladder retraining, habit retraining and pelvic floor exercises.

  • Timed voiding:This is where the person is toileted regularly by their carer for example twice hourly and voiding is recorded. The time between voiding is fixed during the training. A voiding schedule can then be charted to match the individual’s voiding pattern,
  • Prompted voiding: This is where the person is asked by their carer on a regular basis if they need toileting assistance. There should be regular monitoring and people encouraged to report their continence status. It is important to provide positive reinforcement for maintaining continence and to look for non-verbal cues for toileting need,
  • Bladder retraining: This involves, with the help of a carer, slowly increasing the time between voids, learning to control the urge and consequently the number of trips to the toilet. Again, it is important to provide positive reinforcement,
  • Habit retraining: This involves identifying the person’s natural voiding pattern and with the help of a carer developing an individualized toileting schedule to prevent accidents from occurring,
  • Pelvic Floor Muscle Training (PFMT): In people who are motivated and physically more able, PFMT exercises should be considered and can benefit stress urinary incontinence and urge urinary incontinence. The aim is, with the help of a trained health care professional, either to teach the person how to make pelvic floor muscle stronger and increase strength, endurance and co-ordination of muscle activity, or when the muscles are contracted to help relaxation of those muscles.

Health and social care professionals:

Toileting strategies have been tried with varying success in dementia. Factors such as the severity of cognitive impairment, problems with mobility and the frequency of incontinence reduce their benefit (9). However, they may be beneficial to some people provided they are adapted to individual needs (e.g. based on the person’s capacity, the availability of assistance, a person’s voiding diary and other related factors such as bladder volume and fluid intake). Consequently, pelvic floor exercises and the various forms of training mentioned above should be offered, where appropriate, and funded by healthcare insurance companies and national health and social care systems. Nevertheless, it is also worth considering that these regimes can lead to irritation as the person with dementia may perceive this as being treated like a child (10) but in some cases, carers find it burdensome and this may contribute towards their decision to relinquish care (11).

Often, combinations of lifestyle measures and behavioural therapies will significantly improve continence issues.

» Support carers

Providers of continence care:

Provide carers helping a person with dementia and continence problems with:

  • practical support in continence care (e.g. help from a professional carer),
  • training/courses in continence care,
  • psychological and emotional counselling,
  • access to assistive technology, products to promote independent toileting, safety and mobility, and products to prevent and contain incontinence,
  • assistance with laundry,
  • subsidies for equipment and costs incurred,
  • respite (e.g. day care for the person with dementia or temporary replacement of the carer away or in the home),
  • flexible support and services (also to the person with dementia directly).

The importance of taboos, unspoken rules within families about levels of physical contact,gender issues, cultural factors and health conditions amongst carers providing continence care to person with dementia should not be underestimated. These factors may contribute towards decisions for the person with dementia to move into a residential or nursing home.

Counselling should cover a range of psychological and emotional issues such as dealing with despair, feeling degraded, fears about not being able to cope and managing feelings of disgust. The importance of such factors should not be under-estimated.

The ability and willingness of carers to undertake various tasks linked to continence care should be considered when proposing various measures. It should not be presumed that carers will accept responsibility for such tasks.

Health and social care professionals:

Healthcare professionals who were responsible for the initial and any subsequent assessments should follow up the person with dementia and/or carers with regard to the effectiveness and satisfaction with any care or referrals provided.

1.3.3    Medical treatment and surgery

People with dementia and carers:

People with dementia and carers should be aware that in addition to environmental changes, and both lifestyle and behavioural measures, people with incontinence may benefit from a range of medical treatment options and surgery.

A second opinion should be sought in case of doubt about unjustifiable refusal to consider medical treatment and surgical options based solely on the person having dementia.

Proxy decision makers:

People who are authorised to make a decision on behalf of a person with dementia lacking capacity should balance likely risk and the person’s right to take certain risks with likely benefit based on knowledge of that person and his/her previously and currently expressed wishes, subject to national legislation governing substitute decision making.

Health and social care professionals:

An overriding principle should be to assess potential risk against potential benefit and quality of life of the person with dementia.

People with dementia should be given the opportunity to benefit from medical treatment or surgery on an individual basis.

People with dementia should not be denied the possibility to access certain interventions solely on the grounds that there is a risk. They have the right to make an informed decision to accept certain risks if they have the necessary capacity to make that decision.

Healthcare professionals (e.g. GPs, specialists and continence advisors/nurses as well as relevant allied health professionals[9]) should consider the following issues in relation to treatment and surgery for people with dementia and continence problems living at home:

  • As with assessment, when reflecting on possible treatment or surgery for continence problems, start from the assumption that people with dementia have the same needs and rights as other patients,
  • Consider whether possible treatment and surgery options are compatible with individual patients with dementia,
  • Do not rely solely on generalised data about the remaining life expectancy (RLE) of people with dementia which is reportedly lower than for people without dementia or affected by frailty and cognitive impairment[10]. An individual and comprehensive assessment is needed, bearing in mind that dementia is increasingly being diagnosed at an earlier stage,
  • Consider how to maximise the potential of people with dementia to stay at home.
  • Consider ways to address potential barriers to different options (e.g. based on capacity, communication, mobility, available support and consent) for individuals with dementia living at home,
  • Avoid stereotypes and assumptions (e.g. that a person with dementia will be unable to follow instructions),
  • Inform people with dementia and their carers or legal representatives about possible or likely risks associated with specific medical treatment or surgery,
  • The most invasive/potentially risky management options, such as surgery, may be considered by specialists. Surgery for incontinence involving people with dementia should only be carried out in hospitals by health care teams that also have knowledge and experience of dementia,
  • Try to find out from people with dementia and carers, following treatment and surgery, whether they feel that it was of benefit to them,
  • Adhere to clinical guidelines covering the full range of treatment options for different types of incontinence, including pelvic floor exercises, as well as on the use of containment products (e.g. ISO 15621) in the context of patients’ and carers’ needs, as approached from a holistic perspective,
  • Adhere to guidelines about using catheters (e.g. the 2013 EAU guidelines). Indwelling urinary catheters should not be used unless there is a clinical indication (such as in the case of a wound or if the bladder cannot contract any more), only as a last resort and should be removed as soon as clinically warranted. It should be considered that the person with dementia might not understand or accept the medical rationale for the catheter. If the catheter is uncomfortable, they may attempt to remove it and damage the urethra (or prostate). Sometimes, when a catheter is absolutely necessary, a tight body stocking may help prevent such attempts.

Specifically, in relation to the use of medical drugs:

  • Carry out a regular review of medication, of compliance with it and of possible drug combinations which might have an adverse effect on continence,
  • Before prescribing drugs for older people, consult established clinical guidelines such as the Beers Criteria (see reference 12 for details of latest update),
  • Only prescribe medication for UI to people with dementia if more conservative management has failed and if so, ensure that they are carefully monitored by a specialist. The use of anticholinergics in combination with dementia drugs (cholinesterase inhibitors) is still controversial,
  • Establish continence status before prescribing cholinesterase inhibitors for dementia as if someone develops UI, reducing the dose or stopping the drugs may be beneficial,
  • Devise measures to ensure drug compliance,
  • Consider changing the drug regime, especially of older people with dementia and incontinence, before adding another drug to target incontinence.

Be aware that some psychotropic drugs may cause confusion and impaired mobility and also precipitate urinary incontinence.

[1] For further information, see: Alzheimer Scotland (2012). Dementia: making decisions - A practical guide for family members and friends with powers of attorney, guardianship or deputyship. Alzheimer Scotland (http://www.alzscot.org/assets/0000/5331/Dementia-Making-Decisions.pdf)

[2] These documents can all be downloaded freely from the Internet. Please see the references section of this report.

[3] See: http://www.bladderandbowelfoundation.org

[4] For a free summary of the Optimum Continence Service Specification, please see: 

   http://www.gfiforum.com/Documents/Madrid-2014/Summary%20of%20Optimum%20Continence%20Service%20Specification.pdf

[5] For more details about comprehensive geriatric assessments, please see: http://www.medscape.com/viewarticle/465308_4

[6] See chapter on “Management with continence problems” by Cottenden et al. (5) for detailed information on this topic.

[7] For more information, see: http://www.gutsense.org/constipation/normal_stools.html

[8] Adapted from Palmer (1996) (see reference 7)

[9] a whole range of health professionals, who do not fall into the categories of nursing, medicine or pharmacy, but who are part of health care teams 

[10] Larson et al. (2004) cited in Wagg et al. (2013)

 

 
 

Last Updated: Tuesday 30 August 2016

 

 
 

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