Break stigma on incontinence and create shared value

Effective continence care key to good health

If incontinence was a country, it would be the third largest in the world, since 400 million people are affected by it. Almost 42% of people above 65 with daily incontinence are dependent on care of others and living at home.31 Regardless of whether individuals with incontinence require a caregiver or not, they should be supported to be able to handle their incontinence (managing toileting and changing incontinence products) as far as possible by themselves.

This is down to three reasons. First, self-management leads to less dependency on others, increasing dignity and well-being for the individual. Secondly, individuals who are able to self-manage their incontinence are more likely to function better in social context (e.g. at work), thus increasing their contribution to society. Thirdly, it places fewer demands on society, both in terms of people with incontinence needing less assistance from care giving relatives and professional caregivers, as well as delaying or even avoiding institutional care. To live a more independent and dignified live for both the individual with incontinence and their caregivers self-management presents itself as an effective way that also creates a value to society, the shared value. Read more in the Essity report Shared value: Self-management of incontinence.

Woman smiling (photo)

When people are able to stay independent and continue to live at home, not needing to be institutionalized, there is value both for the person and society. Effective continence care through self-management increases the value for all actors involved – it helps to improve not just the quality of life of those suffering from incontinence and their relatives, but also positively impacts the care efficiency at point of care and thereby the use of available resources.

The Essity survey shows that 33% of respondents find incontinence the most difficult issue to talk about, even more difficult than issues such as depression and personal hygiene. The Essity survey also shows that incontinence remains a stigma in many parts of the world.

Incontinence also stands out when it comes to the development of perceived stigmatization with age. Generally, the older people get, the more comfortable they are to discuss topics related to personal hygiene and health. The exception is incontinence, which 61 to 80-year-old-people feel even slightly more uncomfortable discussing than 18 to 25-year-old-people.

Many people with incontinence suffer both from the perceived societal stigma and the physical implications. Together, they can have a substantial impact on the everyday life of a person suffering from incontinence.

Incontinence effects all ages. Here is a calculation from the Essity survey findings on number of work or school days lost per year because of incontinence:


2 million

United Kingdom

2 million


19 million


290 thousand

Improving efficiency is considered key to improve the health of elderly people

To find out how the public thinks health of elderly people can be improved, the Essity survey posed the question; what of the following do you consider most important to improve the health of elderly people in your country? Improving the efficiency of the health care system was selected the most important element. The survey also shows that person-centered care is important as well as actively increasing elderly people’s participation in society.

Person-centered care – putting people first and drives efficiency

Person-centered care is a well-established concept in Sweden that can empower both people living with incontinence and healthcare professionals. In 2015, legislation in Sweden was passed to ensure patients have the right to co-decision making. The Swedish person-centered care standard inspired a European standard that was launched in the summer 2020 and is currently being implemented in 13 countries.32

What is a person-centered care?

Person-centered care involves patients actively participating in their own medical treatment in close cooperation with health professionals.

Person-centered care differs from traditional treatment models that more see the person as the receiver of a medical intervention. The concept typically involves developing health plans together with the person to see and understand the whole person pathway and secure the best possible care all across the process.

“Person-centered care starts with person-centered leadership.”

Helle Wijk, Professor in nursing at the Institute of Health and Care Science
Helle Wijk
Professor in nursing at the Institute of Health and Care Science, Sahlgrenska Academy at Gothenburg University. She is also a researcher at the Gothenburg Person Centered are Center (GPCC). Wijk’s area of interest is in geriatric nursing with a special focus on dementia, incontinence and how the living environment helps or hinders certain care processes.

“The great thing about person-centered care is that it informs and involves all parties to increase everyone’s knowledge and find the best solutions and actions – all to make life as good as it can be for a particular patient,” explains Helle Wijk, Professor in nursing at the Institute of Health and Care Science, Sahlgrenska Academy at Gothenburg University. “It’s about promoting dialogue and spending time to try different solutions to find out what works best and is ‘ok for me’.”

Empowering nurses in continence care

Nurses and care aides are naturally often closest to the persons and the most active profession in finding continence solutions. A person-centered care approach can help, but they also need to have the tools and knowledge to perform continence assessments and have access to the full offering of solutions available.

“Professional carers in Sweden receive basic continence training, but they need to undergo a 10-week course to have the mandate to prescribe different containment products,” says Wijk. “I believe that many nurses would benefit from the course, which would result in better assessments of the care need for persons with incontinence and ultimately better care.”

Leadership can also have a big impact on empowering and motivating healthcare professionals. “Managers must have respect for and be engaged in their staff as person-centered care starts with person-centered leadership,” says Wijk.

“Integrated people-centred health services means putting people and communities, not diseases at the heart of health systems, empowering people to take charge of their own health rather than being passive receivers,”

Portuguese MEP Lidia Pereira, Europe’s People Party (EPP)

Woman sitting on a bed (photo)

Technological solutions in person-centered continence care

The care for people with incontinence in healthcare is about to transform from a “check and change” approach to more high-tech digitalized solutions, enhancing quality of life of the individuals and improving working conditions for caregivers.

“I believe that technology can promote person’s well-being and actually empower staff to do a better job,” claims Wijk. “For example, sensor solutions that indicate when incontinence pads should be changed – particularly for persons who cannot express their need for a toilet assistance or a pad change.” Such sensor solutions can help avoid unnecessary interventions to help staff know when changing pads is actually needed. Changing an incontinence pad unnecessarily at night can disturb sleep leading to fatigue and reduced apetite, which affects the overall quality of life. It can also lead to a waste of resources.

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“We need policy changes to raise awareness of proven digital health technologies that are often overlooked,” says Wijk.

A modern policy framework to secure proper uptake supported by training as well as a value based approach to funding these digital health technology devices is needed . The overall value created for society should be accounted for, rather than focus on the costs per piece or intervention. This is important to secure further investments in innovation, research, new ways of working and digitalization. The digital tools can support a person-centered assessment, allowing the person and the caregiver to a greater understanding individual needs and pattern. The best suited assistance or product for that individual can be chosen, which leads to improved outcomes and better allocation of resources, generating value for the individual, health care systems and society.

Examples of continence care sensor solutions

Tena Identifi™

Uses a pad with built-in sensors to record a person’s voiding pattern for 72 hours, to help make a personal toileting and containment plan based in individually timed assisted toilet visits and containment products.

Tena SmartCare™

A digital health technology device notifying the carer when to change the incontinence product. The notifications are received on an individual smartphone or dashboard in a nursing home.

Inclusive continence care for persons with dementia

Contrary to the common stereotype, people with dementia often have a good quality of life and actively participate in society. This is increasingly the case as people are being diagnosed with dementia earlier in life. “People with dementia therefore need the support to overcome continence issues when they arise as they can hinder their participation in society,” says Dianne Gove, Director for Projects at Alzheimer Europe. “After all, access to continence care is a basic human right, and everyone should be entitled to all the care they need.”

Prioritizing individual needs

Avoiding assumptions and stereotypes on what it means to have dementia is crucial. People with dementia can have a variety of symptoms, require different care and support, and are equipped with their own coping systems. “Failing to identify an individual’s specific needs risks overlooking potential solutions that might suit that particular person,” says Gove. “This is why it’s really important not to base care decisions on a generalized view of dementia.”

Ensuring access to a choice of continence care products that a person can adapt to their own lifestyle and needs is essential. “The right products can empower people by giving them the confidence to go out in public and play an active role in society without worrying about having incontinence accidents,” says Gove. “For people with dementia, it is also important to have easy access to toilets and changing facilities when they’re in a public environment.” With the right level of support, carers can help and facilitate people with dementia to retain continence and independence for as long as possible.

Hands with a shining light (photo)

“Continence care is a basic human right and everyone should be entitled to all the care they need. Policy makers should ensure that programs fund proactive continence care and support”

Dianne Gove, Project Director for Alzheimer Europe

Dianne Gove

Dianne is Director for Projects at Alzheimer Europe where she has worked since 1996. She chairs Alzheimer Europe’s ethics working groups and represents the organization in various projects with partners. Gove has conducted extensive research into GP’s perceptions of dementia and how these relate to stigma and timely diagnosis.

Digital health technology can play a role

The care pathway is helped using technology enabling a good assessment and an improved delivery of person-centered care. Technologies help to assist people with advanced dementia who experience difficulties in expressing their need to go to the toilet or have their pad change managed.

“Digital health technology can certainly play a role by not having to ask about or check a person’s pads,” says Gove. This helps avoid the overuse of products, as well as their underuse, which might lead to hygiene and skin issues. “Technological solutions might also be able to alert carers when assistance is needed or help with a prompting plan, where appropriate, to ensure regular toilet visits, although they must be discreet to ensure privacy and self-esteem,” says Gove.

Digital health technologies, in combination with appropriate continence care products, can help ensure the good quality care for persons with dementia which meets their needs. This way, good outcomes can be achieved for the individual as well as for care giving relatives, whilst ensuring effective use of available resources provided by healthcare payers.

Inclusiveness through continence care support

It is essential that caregivers have the support and training they need to enable people to be at home for as long as possible – particularly people who might not be used to managing incontinence.

“Alzheimer Europe recommends that carers receive the emotional and psychological support they need around continence care,” says Gove. “Policy makers should ensure that programs fund proactive continence care and support.” The possibility to manage your continence and stay at home provides a shared value to both the individual and to society. “We need a proactive approach to continence care where support, advice and counseling on continence problems is readily available to persons and carers alike,” says Gove. “Such comprehensive home care packages for people with dementia are essential to avoid premature entry into residential care by helping people to manage at home for longer.”

Managing continence issues can take up a significant part of any society’s resources, whether it is the person living with continence problems managing their own situation, or if such support is provided by relatives or by care organizations. This shared value can only be created by integrating the efforts from many actors in the care system, as well as companies providing products and services, and policy makers setting priorities, policies and defining regulations.

Old man shaving (photo)

31 Prof. Milsom, Ian, How big is the problem? Incontinence in numbers, 2018. Visit source

32 Swedish standard, Patient involvement in health care – Minimum requirements for person-centered care, EN 17398:2020