Continence, dementia, and care that preserves dignity

Dementia is a growing, global challenge. As populations age, it has become one of the most important issues facing health and care systems around the world. People living with dementia often have problems going to the toilet (continence problems) which can have a profound impact on their lives and on their carers’. There is a misconception that nothing can be done if a person living with dementia experiences episodes of incontinence of urine or faeces or both. In fact, continence can be promoted through activities and care practices, including a balanced diet, exercise, and a clear routine. Encouragement and help to use the toilet may involve ‘signposting’ the toilet and mobility aids. A growing range of products, including assistive technology, can help some people at some times. Even so, the progressive nature of dementia means that there will come a point where containment might be the best approach. In which case, carers and practitioners need support and advice to provide this intimate care in the best way possible.

Many people living with dementia have continence problems  that are fundamentally different to the continence problems of people without dementia. People living with dementia need high quality, personalised continence care to have a good quality of life. This should be a high priority in all settings. Research has found deficits in professionals’ assessment and management of continence in people living with dementia at home, in care homes and in hospitals. The problem is magnified by a lack of effective evidence-based interventions for professionals to call upon and a wider lack of attention and investment. Both dementia and continence are associated with stigma and shame; people with both can suffer a double indignity. This can delay seeking or offering help, and leave underlying problems unaddressed.

Professionals often focus on “containing” the problem through pads and other incontinence products, rather than actively promoting continence. This is particularly true in hospitals where organisational sensitivity to individual needs may be lacking. Recent observational research shows that staff routinely use inappropriate and demeaning language around continence care. People living with dementia have the same rights to privacy and dignity as everyone; such practice fails to respect their human rights.

The quality of continence care should be routinely audited. More research is needed to identify effective interventions to promote personalised care and independence. These will include communication and management strategies. There is a need to invest in evidence-based training for staff to provide them with skills in continence care and the care of people living with dementia. 

Identifying, assessing and managing continence problems can enable people living with dementia to maintain their dignity and improve their health. Good management can improve their and their carers’ sense of wellbeing and quality of life. There is a realistic possibility of improving relationships, reducing the burden on carers and the risk of an unwanted move to a care home.

Podcast: How can we improve continence care for people living with dementia?

Table of Contents

1. Themed Reviews
2. Introduction                                                                                                                                              
3. The impact of continence problems on people living with dementia and their carers
4. Strategies to support continence in people living with dementia
5. Improving continence care for people living with dementia at home – research findings
6. Improving continence care for people living with dementia in care homes – research findings
7. Improving continence care for people living with dementia in hospital – research findings
8. Conclusion and recommendations

1. Themed Reviews

The NIHR funds and enables world-leading health and social care research. Themed Reviews bring together NIHR-funded research in areas of strategic importance to the NIHR and nationally. They are not systematic reviews of all the evidence, guidance or recommendations for care. They are narrative reviews based on different kinds of evidence, selected to provide actionable insights. Reviews are guided by a Steering Group (membership listed below) with relevant research and practice expertise, and/or lived experience.

The NIHR has invested extensively in dementia research. Less attention has been devoted to the need for continence care among people living with dementia (Edwards et al., 2021). However, in recent years, the NIHR has funded several studies based in the community, care homes and acute hospitals. Our Themed Review brings together this learning alongside several other relevant resources. We hope it will help those commissioning and delivering services, along with those caring for people living with dementia who have continence problems.

2. Introduction

Dementia is a growing, global challenge. As the population ages, it has become one of the most important issues facing health and care systems around the world. In the UK, around 885,000 people have dementia (Edwards et al., 2021). Around 540,000 family members or friends care for people living with dementia in England. It is estimated that one in three people will care for someone living with dementia in their lifetime.

The term ‘dementia’ describes a set of symptoms that include loss of concentration and memory problems, mood and behaviour changes and problems with communicating and reasoning. Dementia is a progressive condition, which means that the symptoms become more severe over time. People with living dementia and their families have to cope with changing abilities such as the capacity to make decisions about major life events as well as day-to-day situations. It is important, however, to recognise that no two people living with dementia or their carers are the same and individuals will have unique and differing needs (Prime Minister’s Challenge on dementia 2020).

People living with dementia are at least three times more likely to have urinary incontinence, and four times more likely to have faecal incontinence, than those of a similar age without dementia (Grant et al., 2013). These problems can have a significant impact upon the person living with dementia and their carer(s).

Dementia is a major policy priority. The Dementia Care Challenge was launched in 2015. It aims to make England the best country in the world for dementia care, support, research and awareness. Yet the associated policy documents do not describe continence problems as an area requiring specific attention. This is despite its impact on people living with dementia, their carers and the health and care system as a whole. Incontinence problems in people living with dementia magnify costs significantly (Drennan et al., 2015).

Even so, many of the standards and expectations set out in the “The Well Pathway for Dementia” are directly relevant (see box below). The steering group for this Themed Review highlighted a lack of robust data on the numbers of people living with dementia who experience continence problems. There is limited understanding of: different type of incontinence, those affecting men versus women, those emerging at different types and stages of dementia, and so on. There is also little understanding of the needs and experiences of different groups including ethnic minorities & LGBTQ+ populations. 

“I am treated with dignity and respect”

“I get treatment and support which are best for dementia and my life”

“I know that those around me and looking after me are supported”

“I feel included as part of society”

The Well Pathway for Dementia

Many adults have problems with aspects of continence. But the continence problems of people living with dementia are fundamentally different to those of people without dementia (Murphy et al., 2021). They can significantly worsen the already profound impact that dementia may have on a person’s dignity and quality of life:

“Both dementia and incontinence are points of moral challenge. They both have the potential to elicit strong moral responses of care and concern, and conversely, strong aversion and stigma, which can occasion rejection and diminished moral and social status.”

P252 (Boddington and Featherstone, 2018)

“In different diseases, people have the symptoms of the disease concerned but the symptoms of incontinence can have the bigger impact, leading to loss of dignity, productivity and quality of life.”

Workshop Participant, James Lind Alliance (Marie Curie & others, 2018) 

3. The impact of continence problems on people living with dementia and their carers

Dementia progressively takes away a person’s mental and then physical capacity. Problems with continence and using the toilet can be a key milestone and have a significant impact on quality of life and wellbeing. Incontinence is under-reported and many people cope in silence. They either do not seek services, or do not receive effective treatment, even where it is possible (Wagg et al., 2008). People living with dementia are twice as likely to receive drug treatment for incontinence and women living with dementia are twice as likely to receive a urinary catheter than people without dementia (Grant et al., 2013). Poorly-managed incontinence can have severe physical, psychological, economic and social consequences for people living with dementia and their informal carers (Murphy et al., 2021). Continence problems can cause embarrassment and shame, and have a profound and distressing impact on people living with dementia. Even well-contained incontinence can have a negative impact on people living with dementia and their carers (Murphy et al., 2022).

Multifaceted and complex factors can limit the ability of someone with dementia to effectively use the toilet or contain incontinence. A recent qualitative study (Murphy et al., 2021) grouped the factors that can cause continence problems as being:

• dementia – directly linked to the cognitive and behavioural problems of  dementia
• physical – for example, underlying bladder and bowel problems or mobility issues
• psychosocial – such as when either the person with dementia their carer find it difficult to talk about incontinence
• societal – the stigma associated with incontinence, and the lack of adequate toilet facilities in public places
• care system – a lack of expert knowledge and lack of access to suitable products
• products – poor product design and limited choice.

For example:

“a person living with dementia might fail to recognise the signals that their bladder required emptying (dementia factor), exacerbated by lack of adequate continence products (care system factor) and family avoidance (societal factor- stigma)”.

(Murphy et al., 2021)

There is a general lack of understanding and stigma associated with continence problems (Marie Curie & others, 2018). Practitioners in all services also lack knowledge and training in relation to incontinence and dementia (Murphy et al., 2021).  

“There is a gap in existing guidelines and nursing texts about managing the interpersonal aspects of providing continence care for people who are cognitively impaired and about negotiating consent for care.”

p523 (Ostaszkiewicz, 2017)

Carers can find it hard to raise the subject and to know what to do when someone living with dementia has continence problems. Managing these problems can be more difficult than dealing with behavioural symptoms (Drennan et al., 2011). Carers can be affected emotionally, physically and psychologically (Aldridge and Dening, 2021). Disruption to daily life includes interrupted sleep, limits on normal daily outings and disrupted relationships with friends and community (Juliebø-Jones et al., 2021). Continence problems can trigger crises (Orrell et al., 2017), a loss of independence and unwanted moves to care homes (Samsi et al., 2021).

4. Strategies to support continence in people living with dementia

“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.”

p58 (Aldridge and Dening, 2021)

NHS England best practice guidance (NHS England, 2018) states that while containment through products such as absorbent pads or urine collecting devices can maintain social continence, “treatment must always be the preferred option”.  Pads and catheterisation can be uncomfortable, undignified, and they carry risks of infection. A set of outcome indicators have been developed to improve the quality of continence care (Wagg et al., 2019). These encourage the rapid assessment of continence problems. They also recommend training for staff to enable them to undertake a continence assessment and provide more personalised continence care. However, research in the NHS has shown that frontline staff frequently signpost other services, rather than managing continence problems themselves (Drennan et al., 2015). Nearly a decade ago, researchers found that NHS clinical guidance on continence rarely encompasses or even mentions dementia (Drennan et al., 2013), and the situation may be little different now.

The Continence Care Framework (Ostaszkiewicz, 2017) aims to support nurses and care workers to meet the continence care needs of people with complex health conditions who rely on another person to help manage incontinence or to maintain continence. The Framework is underpinned by two core concepts: dignity and care. Ostaszkiewicz argues for training that starts with the human experience of being incontinent. The aim is to build resilience in the person with care needs, and to promote their physiological and psychological well being.

Among 45 participants (Murphy et al., 2021), researchers explored the type of support that would help people living with dementia and their carers.

They highlighted several needs.

• Timely, high-quality information for carers including the causes of incontinence, management strategies, and sources of possible help and support. [Charities and the NHS have developed some practical guidance and help for people living with dementia and their carers].
• Support for carers to develop coping skills including the emotional and practical nursing skills required to manage incontinence.
• Improved healthcare service provision including proactive and expert support in community and hospital settings; more training and resources for healthcare professionals.
• Dementia-specific products that are designed to be more usable and tolerable for people living with dementia and their carers. The EVIDEM-C study (cited below) found that continence pads need to be able to be changed easily (in a variety of circumstances) as well as being able to hold excreta and liquid over different periods of time.
• Friendly environments for people living with dementia and incontinence which mean improved facilities for managing incontinence when out and about, in particular accessible toilets and day centres.

Any care strategy also needs to be alive to the potentially differing perspectives of the person living with dementia and their carer, and ensure that the wellbeing of the person living with dementia is protected (Drennan et al., 2011).

5. Improving continence care for people living with dementia at home – research findings

“The geriatric giant of incontinence, as experienced by people with dementia at home and carers, remains untamed”

(Drennan et al., 2011)

Over two thirds of all people living with dementia live in their own homes (Grant et al., 2013). The NIHR funded a major programme of work (EVIDEM-C) investigating how to improve health and social care for people living with dementia and incontinence living at home (Iliffe et al., 2015). It was part of a larger programme (EVIDEM). The findings from EVIDEM-C informed priorities for action (Drennan et al., 2017) and signposted helpful resources.

These priorities resonate with the more recent findings already discussed (Murphy et al., 2021); key points are listed here.

Early professional assessment

Continence in people living with dementia can often be addressed, particularly in the early stages of dementia. The default option should be to seek clinical assessment rather than resorting to continence pads. The Alzheimer’s Society Guidance recommends that GPs should be the first point of contact. They should review the symptoms and any underlying medical conditions, diet or medications that might be causing the problems. If they are unable to resolve the problem, they should refer to a continence adviser, to draw up a care plan, with the support professionals should provide, follow-ups and next steps.

Supporting continence at home

As suggested above, maintaining continence in people living with dementia is likely to require active support, tailored to individual needs. It is important to set up routines at an early stage (Murphy et al., 2021). Problems with continence can trigger distressed or challenging behaviour, indicating unmet needs. It is important that people in caring roles are alert to this and understand how to respond.

Continence can be promoted through a range of activities including a balanced diet, exercise and hand hygiene. Encouragement and help to use the toilet are important and may involve mobility aids, such as handrails or a raised toilet seat, along with ‘signposting’ or clear directions and signage. A growing range of products, including assistive technologies, can help. In the future, existing technologies could be repurposed to incorporate sensor technology into homes or products (Murphy et al., 2021).‘Virtual assistants’ (e.g. Alexa) could prompt toilet-use and continence care tasks, if they are acceptable and not confusing.

Manage incontinence sensitively

Where continence cannot be maintained, sensitive management of incontinence can promote and maintain a person’s dignity. Care is needed when choosing continence products. The right product can encourage use and improve outcomes. Comfortable, breathable materials should be preferred in containment products (Murphy et al., 2021). Sensitivity is also needed around the language that staff use, avoiding words that depersonalise care like “toileting”.

A major challenge is the lack of evidence-based approaches or guidelines (Burholt et al., 2020). Professionals to whom people may turn for support, themselves lack knowledge and training (Drennan et al., 2011; Murphy et al., 2021). For example, a review of English community nursing continence policies and guidance found only three out of 38 services provided detailed guidance on the management of incontinence and dementia (Drennan et al., 2013). 

A 2015 Unison survey of more than 1,000 homecare workers found significant deficits in training and support. In this group of staff, even the basic Care Certificate is optional. The survey concluded: “Changing catheter bags, peg feeding, stoma care*, administering medication and looking after patients with dementia are just some of the difficult tasks that homecare workers carry out, even though many receive little or no training.”

Alongside the lack of training is the very real challenge of meeting complex needs in short periods of time.

“One of the things I would wish for most would be time. Time for my mum. So today is like every other day here she has a 20 minute slot where a carer comes to help her use the toilet and give her lunch. So it's often a choice for the carer as to which to prioritise. I'm very lucky because she lives with me and my dad, so we can say to the carer, don’t worry about the food, we need support with the toilet please. Sometimes my mum might take a bit longer on the toilet, sometimes nothing comes so there's never enough time. So for her the pressure to go at the right time or not go at the right time or not take too long. You know, even though she's in very late stages of dementia, she will sense that and that someone's clockwatching”.

Carer on Steering Group

6. Improving continence care for people living with dementia in care homes – research findings

Most care home residents (an estimated 80%) have dementia. Between 30% and 50% have faecal incontinence (Goodman et al., 2017), which generally occurs alongside urinary incontinence. One study found that around 30% care home residents have urinary incontinence alone (Russell et al., 2017). Faecal and urinary incontinence can cause distress and discomfort and impact an individual’s sense of dignity and self-worth. Complications include skin breakdown and infection. Incontinence can also be a challenging aspect of care for care home staff (Russell et al., 2017). 

There is evidence that care home staff want to give the best person-centred care. They feel torn, however, between doing what is right for an individual and getting through the work. This can mean that help with going to the toilet and intimate or personal care are reduced to a series of tasks that need to be completed to fulfil regulatory and other requirements, and carried out under staffing pressures (Russell et al., 2017). In some care homes, it is not clear who is responsible for continence care (Booth et al., 2021). In general, the attitudes and views of care home staff have been under-researched. A current PhD study (Hewer-Richards, 2021) aims to understand how care home staff see their role in relation to continence care and managing the associated stigma.

A major NIHR-funded project called “Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence” (Goodman et al., 2017) explored how different interventions support (or do not support) the reduction and management of faecal incontinence in people with advanced dementia living in care homes. It reached several conclusions about how to improve continence care.

Findings from the FINCH study:

Individualised care that promotes personal dignity

Personal and intimate care should respond to an individual’s preferences and needs. There is good evidence that appropriate diet, fluid intake and increased mobility can improve faecal incontinence. The preferences of the person living with dementia need to be considered when new measures are introduced. The care home’s activities and routines also need to support the change. For example, overemphasis on constipation as a major cause of faecal incontinence can have an unintended consequence. Staff may focus on the assessment and management of constipation at the expense of person-centred approaches that take the person’s dementia and personal history into account.  Prompts to go to the toilet (when appropriate) should be the preferred strategy to avoid an over-reliance on pads.

Staff skills, training and support

Staff need practical training on how to support and encourage a person with dementia to continue to use the toilet. They need to understand how a person’s dementia affects their ability to be continent, communicate their need for the toilet, and recognise and remember how to use a toilet. Visiting clinicians can provide ongoing support and reinforcement of good practice and education. Care home staff need time to reflect on practice and learn from each other about how to promote continence. 

Using technology to promote continence

The NIHR funded a major trial of transcutaneous posterior tibial nerve stimulation. It was intended as a treatment for the type of incontinence associated with a sudden need to use the toilet (urgency incontinence) (Booth et al., 2021). The trial found that for older people living with dementia in care homes, it did not reduce urinary incontinence. This technology was not a viable solution.

7. Improving continence care for people living with dementia in hospital – research findings

Before COVID-19, up to 50% of a hospital’s acute beds were occupied by people living with dementia (Boddington and Featherstone, 2018). People living with dementia can lose capability and deteriorate quickly in an acute hospital setting. The quality of continence care is frequently poor (Percival et al., 2021; Wagg et al., 2008). Staff may lack attention and oversight, and staffing pressures are a key problem, which can lead to over-reliance on continence products (Percival et al., 2021).

“Custom and practice in respect of pad over-reliance was implied by many interviewees when speaking of pads being provided as a matter of course, without first determining need, suitability, benefit or risk. This convention was summed up by one staff nurse when admitting, ‘we tend to get pad happy'"

p5 (Percival et al., 2021)

Poor continence care can drive poor clinical outcomes, including an increased risk of infection and higher overall care costs. It can also lead people to develop incontinence. Just over a third of people living with dementia in hospital were reported to have developed urinary incontinence at the time of discharge in one study. Of these people, 2% also developed faecal incontinence for the first time (Edwards et al., 2021).

A recent NIHR-funded mixed methods systematic review and thematic synthesis (Edwards et al., 2021) identifies successful approaches to improving continence care for people living with dementia in hospital. An ethnographic study explored ward staff’s responses to the continence needs of people living with dementia. (Featherstone et al., 2022).

The systematic review (Edwards et al., 2021) identified common themes and lessons for good quality care. It found the quality of evidence was poor overall, and it highlighted important evidence gaps.

Findings from the systematic review

Communication that is dignified, person-centred and respectful

Continence problems in people living with dementia present communication challenges. People living with dementia can find it hard to express their needs. Staff need to be sensitive to a range of person-specific, verbal and non-verbal cues around continence care. Their choice of language needs to respect someone’s dignity and avoid embarrassment and distress. Training in continence care needs to include interpersonal communication and recognition skills. More research is needed to identify the most effective communication strategies.

Communication during outpatient appointments

Professionals and carers were uncertain about whether and how continence issues should be raised in outpatient appointments. Written materials and checklists could be helpful in this setting. Better guidance is needed, informed by further research.

Delivering individualised continence care

An individualised continence care plan needs to be based on a thorough clinical assessment. Potentially reversible causes should be identified, along with contributing or aggravating factors.  Further investigation or specialist referral should be considered (Alzheimer Europe, 2014). There is less certainty around the ideal content of plans and a dearth of evidence-based interventions (Murphy et al., 2021). 

Findings from the ethnographic study of wards

The ethnographic study took place in six acute wards across three hospital sites.  For 180 days, detailed observations were made of everyday care and interactions between staff and people living with dementia.

The study identified “pad culture”, which is the routine use of continence pads, as the dominant care strategy. People living with dementia were expected to use the pad even if they were continent and able to mobilise and use the toilet.

A major driver for such “containment” was concern about safety and preventing falls. These fears drove staff strategies to keep people in their beds. Active continence care to support independence was not prioritised within ward schedules. More senior staff distanced themselves from continence care, leaving this work primarily to nursing and healthcare assistants. Continence care was seen by ward staff as a “heavy” burden that carried low status and was invisible to the wider organisation.

There were notable examples of good practice, particularly by individual staff within these wards. But there were also many examples of care that was organised and delivered in a way that took away people’s dignity and caused distress to them and their family. Care at the bedside was carried out with a lack of sensitivity to individual needs, either in silence or using inappropriate or coded language. One powerful example was a senior nurse talking to a person living with dementia and saying loudly so that it could be heard by others, “Did you go for a poo? Oh, you’ve got a pad on, did you do it on the bed? Lift your bum up for me”. P52.

People were frequently left in pads for long periods of time until the timetables of routine care allowed. Pads leaked, smelled and damaged skin. Continence care became part of scheduled task-based bedside care and was reduced to the inspection and replacement of pads.

Recommendations for action

The Featherstone study concluded that high quality, personalised continence care is essential to good clinical outcomes for people living with dementia during an acute hospital admission. It is a key part of a high quality service and must be given a much greater organisational priority. The adverse consequences of current policies around falls prevention in acute settings need to be recognised. Ward staff require training and resources to respond sensitively to the needs of people living with dementia during intimate care. There is an urgent need to invest in evidence-based nursing and other practitioners’ education in continence care and the care of people living with dementia during a hospital stay.

8. Conclusion and recommendations

Continence problems can have a profound and distressing impact on the lives of people living with dementia and their carers. There is evidence of an over-reliance on “containment” and the use of products such as pads. Staff in all settings often lack training, not only to promote continence but to manage incontinence sensitively and well.  Recent evidence (Featherstone et al, 2022) highlights the demeaning language and behaviour among some hospital staff. 

There is a lack of research about what works and therefore a lack of evidence-based guidance. Action is needed at all levels to help health and care staff respond to people living with dementia’s diverse needs and deliver high quality, personalised continence care. If you get continence care right, everything else follows, it underpins people’s dignity and health.

“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.”

p58 (Aldridge and Dening, 2021)

Key messages

Key messages for policy makers and commissioners

• High quality, personalised continence care for people living with dementia is a human right and should be a priority within any dementia strategy.
• Research has found deficits in professionals’ assessment and management of continence in people living with dementia at home, in care homes and in hospitals. The problem is magnified by a lack of effective evidence-based interventions for professionals to call upon and a wider lack of attention and investment.
• Identifying, assessing and effectively managing continence problems can enable people living with dementia to maintain their dignity and improve their health.
• Investment is needed in care staff time, training and continence products to improve the quality of continence care for people living with dementia.
• High quality continence care can save resources, avoiding costly hospital admissions and premature transitions to residential care.

Key messages for NIHR

• There is a need for more research to identify effective interventions to promote personalised continence care. This includes communication and management strategies.

Key messages for service providers

• Continence care should be prioritised in all settings and seen as a key component of high quality care.
• Staff in all settings should be trained, including
  • Dementia specific communication skills and values that promote personal dignity and safety including the use of appropriate language
  • Strategies to promote continence
  • How to deliver personalised, sensitive care for incontinence including appropriate choice of products.
• Continence problems should be proactively raised by staff and addressed in care plans to promote people’s independence.
• Care environments should be adapted to encourage and help people living with dementia safely use the toilet.
• Organisations should agree and monitor key quality indicators for continence including capturing the use of pads.

Key messages for care regulators

• The quality of continence care, including the use of pads, should be routinely audited and assessed.

Authors

Candace Imison, Associate Director, NIHR
Jemma Kwint, Senior Research Fellow (Evidence), NIHR

Disclaimer: This publication is not a substitute for professional healthcare advice. It provides information about research which is funded or supported by the NIHR. Please note that views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.

Resources and support

Alzheimer’s society – continence and dementia useful resources

Dementia UK – continence and dementia useful resources

NHS Choices – describes the causes of urinary incontinence and how to treat and manage it

The Bladder & Bowel Community, provides a range of support, information, guidance on conditions affecting the bladder and bowel, including incontinence.

The International Continence Society – provides professional training and sets standards for continence care including continence products.

Continence Product Advisor - gives users, carers and healthcare professionals detailed, information about products for bladder, bowel, and continence problems. The information is independent and evidence based.

Steering Group Membership

This Themed Review was guided by a Steering Group, listed below:

Professor Katie Featherstone - Professor of Sociology and Medicine, University of West of London

Professor Vari Drennan - Professor of Health Care & Policy Research, Kingston University

Professor Jill Manthorpe - Associate Director of the NIHR School for Social Care Research, King's College London

Professor Martin Knapp - Director of the NIHR School for Social Care Research, LSE

Dr Catherine Murphy - Regd Nurse, Senior Research Fellow in the Bladder and Bowel Management research group, University of Southampton

Suzy Webster - Public participant

Zena Aldridge - Admiral Nurse Research Fellow, Dementia UK

Adam Smith - Programme Director, Office of the National Director for Dementia Research, NIHR / UCL

References

Aldridge, Z., Dening, K.H., 2021. Dementia and continence issues. J. Community Nurs. 35, 58–62.

Alzheimer Europe, 2014. Improving continence care for people with dementia living at home.

Boddington, P., Featherstone, K., 2018. The canary in the coal mine: Continence care for people with dementia in acute hospital wards as a crisis of dehumanization. Bioethics 32, 251–260.

Booth, J., Aucott, L., Cotton, S., Davis, B., Fenocchi, L., Goodman, C., Hagen, S., Harari, D., Lawrence, M., Lowndes, A., Macaulay, L., MacLennan, G., Mason, H., McClurg, D., Norrie, J., Norton, C., O’Dolan, C., Skelton, D., Surr, C., Treweek, S., 2021. Tibial nerve stimulation compared with sham to reduce incontinence in care home residents: ELECTRIC RCT. Health Technol. Assess. 25, 1–110.

Burholt, V., Davies, J., Boyd, M., Mullins, J.M., Shoemark, E.Z., the Centre for Ageing, D., Dementia Research, Expert Review Group on Continence, 2020. A research agenda for promoting continence for people living with dementia in the community: Recommendations based on a critical review and expert-by-experience opinion. J. Clin. Nurs. n/a.

Cole, L., Drennan, V.M., 2019. Living with incontinence: The experience of people with dementia. Dementia 18, 1826–1839.

Drennan, V., Iliffe, S., Wilcock, J., Goodman, C., Griffin, M., Knapp, M., Lowery, D., Manthorpe, J., Rait, G., Warner, J., 2015. EVIDEM-C: Chapter 3 promoting continence and managing incontinence with people with dementia living at home, Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). NIHR Journals Library.

Drennan, V.M., Cole, L., Iliffe, S., 2011. A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home. BMC Geriatr. 11, 75.

Drennan, V.M., Manthorpe, J., Ilifffe, S., 2017. Meeting the needs of older people living at home with dementia who have problems with continence. Qual. Ageing Older Adults 18, 246–253.

Drennan, V.M., Norrie, C., Cole, L., Donovan, S., 2013. Addressing incontinence for people with dementia living at home: a documentary analysis of local English community nursing service continence policies and clinical guidance. J. Clin. Nurs. 22, 339–346.

Edwards, D., Harden, J., Jones, A., Featherstone, K., 2021. Understanding how to facilitate continence for people with dementia in acute hospital settings: a mixed methods systematic review and thematic synthesis. Syst. Rev. 10, 199.

Featherstone, K., Northcott, A., Boddington, P., Edwards, D., Vougioukalou, S., Bale, S., Harrison Dening, K., Logan, K., Tope, R., Kelly, D., Jones, A., Askey, J., Harden, J., 2022. Understanding approaches to continence care for people living with dementia in acute hospital settings: an ethnographic study. Health and Social Care Delivery Research Volume: 10, Issue: 14.

Goodman, C., Norton, C., Buswell, M., Russell, B., Harari, D., Harwood, R., Roe, B., Rycroft-Malone, J., Drennan, V.M., Fader, M., Maden, M., Cummings, K., Bunn, F., 2017. Managing Faecal INcontinence in people with advanced dementia resident in Care Homes (FINCH) study: a realist synthesis of the evidence. Health Technol. Assess. 21, 1–220.

Grant, R.L., Drennan, V.M., Rait, G., Petersen, I., Iliffe, S., 2013. First Diagnosis and Management of Incontinence in Older People with and without Dementia in Primary Care: A Cohort Study Using The Health Improvement Network Primary Care Database. PLoS Med. 10, e1001505.

Hewer-Richards, L., 2021. Dementia Care Practices and Incontinence-Related Stigma in Care Homes | ENRICH. (accessed 11.29.21).

Iliffe, S., Wilcock, J., Drennan, V., Goodman, C., Griffin, M., Knapp, M., Lowery, D., Manthorpe, J., Rait, G., Warner, J., 2015. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Programme Grants Appl. Res. 3, 1–596.

Juliebø-Jones, P., Coulthard, E., Mallam, E., Archer, H., Drake, M.J., 2021. Understanding the Impact of Urinary Incontinence in Persons with Dementia: Development of an Interdisciplinary Service Model. Adv. Urol. 2021, 9988056.

Marie Curie & others, 2018. “My bladder and bowel own my life”: A collaborative workshop addressing the need for continence research. James Lind Alliance.

Murphy, C., de Laine, C., Macaulay, M., Avery, M., Fader, M., 2022. A qualitative study and preliminary model of living with dementia and incontinence at home: beyond containment. Age Ageing 51, afab221.

Murphy, C., De Laine, C., Macaulay, M., Hislop Lennie, K., Fader, M., 2021. Problems faced by people living at home with dementia and incontinence: causes, consequences and potential solutions. Age Ageing 50, 944–954.

NHS England, 2018. Excellence in Continence Care: Practical Guidance for commissioners and leaders in health and social care. NHS England, Leeds.

Orrell, M., Hoe, J., Charlesworth, G., Russell, I., Challis, D., Moniz-Cook, E., Knapp, M., Woods, B., Hoare, Z., Aguirre, E., Toot, S., Streater, A., Crellin, N., Whitaker, C., d’Amico, F., Rehill, A., 2017. Support at Home: Interventions to Enhance Life in Dementia (SHIELD) evidence, development and evaluation of complex interventions. Programme Grants Appl. Res. 5, 1–184.

Ostaszkiewicz, J., 2017. Reframing continence care in care-dependence. Geriatr. Nur. (Lond.) 38, 520–526.

Percival, J., Abbott, K., Allain, T., Bradley, R., Cramp, F., Donovan, J.L., McCabe, C., Neubauer, K., Redwood, S., Cotterill, N., 2021. “We tend to get pad happy”: a qualitative study of health practitioners’ perspectives on the quality of continence care for older people in hospital. BMJ Open Qual. 10, e001380.

Russell, B., Buswell, M., Norton, C., Malone, J.R., Harari, D., Harwood, R., Roe, B., Fader, M., Drennan, V.M., Bunn, F., Goodman, C., 2017. Supporting people living with dementia and faecal incontinence. Br. J. Community Nurs. 22, 110–114.

Samsi, K., Cole, L., Manthorpe, J., 2021. ‘The time has come’: reflections on the ‘tipping point’ in deciding on a care home move. Aging Ment. Health 0, 1–7.

Wagg, A., Gove, D., Leichsenring, K., Ostaszkiewicz, J., 2019. Development of quality outcome indicators to improve the quality of urinary and faecal continence care. Int. Urogynecology J. 30, 23–32.

Wagg, A., Potter, J., Peel, P., Irwin, P., Lowe, D., Pearson, M., 2008. National audit of continence care for older people: management of urinary incontinence. Age Ageing 37, 39–44.

NIHR Evidence is covered by the creative commons, CC-BY licence. Written content and infographics may be freely reproduced provided that suitable acknowledgement is made. Note, this licence excludes comments and images made by third parties, audiovisual content, and linked content on other websites.

• Share via:
•