Before I began my PhD, I worked in residential homes supporting individuals with a dementia. I worked in a variety of roles: starting as a care assistant, working my way to Unit Manager whilst dropping in and out of domestic and administration work. In my time as a carer, there is one memory that always stands out. A colleague and I were assisting a woman after she had been incontinent. She had experienced diarrhoea. While providing personal care, there was a moment in which liquid faeces was accidentally sprayed across the room – landing over my face and, as I was mid-word, in my mouth. My colleague was horrified. Honestly, I was horrified. However, the clearest memory I have of that day is the face of the individual we were supporting. Her expression was an amalgamation of shame, embarrassment, and fear. I was incredibly aware that how I reacted to the situation was crucial. If I showed my own shock, disgust and distress how would that make the woman I was supporting feel?

Stigma and Faecal Incontinence

Going to the toilet is something we all do; it is something we need to do to keep our bodies functioning. Poo, faeces, going to “number 2” is something we all do usually on a daily basis, but it may not be something we talk about. Writing this post, I am continuously aware of the words I am using and how I can make it sound “nice” and inoffensive, which shows my own discomfort with the topic. Research shows that individuals who experience faecal incontinence often feel stigmatised, embarrassed and “contaminated”; often avoiding social interaction out of concern others will discover their incontinence.  For care workers, close contact with people who experience faecal incontinence and poo itself can lead to them being “contaminated”. They “just do the dirty work”. When I was working in care and I told people outside the industry what my job was, they nearly always responded with “I couldn’t clean up poo”.

Stigma is generally described as a strong feeling of disapproval or aversion in response to a specific action, behaviour or characteristic. Different forms of stigma tend to have the same outcome: people who act in a socially unacceptable way can be viewed negatively by society, leading to these people being treated with less respect and dignity. Persons who are stigmatised can be discriminated against, targeted, and isolated from society. For example, a person who experiences faecal incontinence may be avoided due to smells associated with incontinence.

When an individual is stigmatised, they may begin to agree with the belief that others are imposing on them. An individual with faecal incontinence may begin to believe it’s their fault they are being isolated and avoided, whereas incontinence is something the individual cannot control. This can have negative consequences such as depression and lack of self-confidence. This may result in a reluctance to discuss their bowel movements with everyone but their most trusted friends and partners.

Continence care and dementia

Skills such as coordination, visual perception, and sequencing tasks – all of which are necessary for going to the toilet – can often be impacted by the onset of dementia and make activities of daily living more difficult. Issues in accessing or using the toilet can cause distress and agitation, which sometimes become labelled as “challenging behaviours” once an individual is living in residential care.  In addition, people with a dementia may have difficulty communicating their needs. This means that by the time a care worker is preparing to support an individual with a dementia who has been incontinent, that individual may be frustrated, disorientated and embarrassed.

These interactions, however brief, can form the basis of relationships between people with a dementia and the formal care workers supporting them. How care workers respond to an individual can potentially influence future interactions. Something as simple as a care worker wrinkling their nose in response to the smell of faeces may cause the individual being supported to feel additional embarrassment, affecting that care experience.

What can we do?

Despite research into how continence care is provided in residential care, we know little of the attitudes, opinions and experiences of care workers. Currently, research into continence care tends to focus on interventions and organisational factors that aid or hinder implementation of interventions.

My experiences of working in care have led me to want to know more about the experiences of care workers supporting individuals with dementia and incontinence. To support care staff to improve the experience of people with dementia, it would be useful to explore what is currently happening in practice. In this study I am inviting care staff working in residential homes in England to share their experiences of continence care with a focus on people with dementia through remote interviews.

Those who to take part in the interviews will receive a £10 shopping voucher. If you or someone you know is a residential care worker, working with people with dementia and would like to take part in this study or would like more information, please contact me on l.hewer-richards@soton.ac.uk.