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The latest Learning from Lives and Deaths Review Programme (LeDeR) lists constipation as one of the top five (23.6%) comorbidity conditions for deaths among people with learning disabilities. The review also notes that 50% of all deaths involved individuals affected by constipation. Furthermore, 18% died of bowel cancer, which can be associated with chronic constipation.1
Research shows the prevalence rates of constipation among individuals with learning disabilities range from 33-50%, increasing to 60% in people with profound intellectual and multiple disabilities (PMLD).2
Constipation – either our own or another person’s – is a condition no one wants to talk about. A person’s bowel movements are deeply personal to them. It’s often embarrassing to discuss any ‘downstairs’ problems with anyone, especially someone we don’t know or feel comfortable with.
However, are adults with learning disabilities literally dying from embarrassment? It’s time for a sea change in how constipation is addressed.
Constipation 101
Most of us don’t think about our bowel movements. At a particular time or times during the day, we have the need to use a toilet, and we find one and use it, which is a straightforward affair.
We are all meant to have regular bowel movements. ‘Regular’ is different for every person. Some people have several poos every day. Others have just three or four each week. Our poos are meant to be well-formed, like a soft sausage, and easy for us to pass without straining. We should not experience an urgent need to have a poo.
A person’s abdomen is meant to feel comfortable. We’re not meant to experience persistent bloating, painful trapped wind, or other discomfort. We are also not meant to experience rectal bleeding.
Most of us naturally manage our bowel health through a healthy diet with plenty of fibre, drinking enough water and getting enough exercise. We may occasionally need a gentle laxative if things aren’t moving along properly, but this is the exception rather than the norm.
For many people with learning disabilities, however, bowel movement regularity and maintaining a healthy lifestyle conducive to regular, well-formed poos do not come naturally. Adults with learning disabilities who suffer from constipation generally require the assistance of caregivers and medical professionals. This can be uncomfortable and awkward.
Why is there such a high prevalence of constipation in the learning disabled population?
Constipation is a very complex issue for both children and adults with learning disabilities. Many factors contribute to this:
Lack of awareness for the person, carers, and parents
Unless a person is aware of how the body functions in terms of digestion and elimination, they may not understand the importance of having regular, healthy bowel movements. Parents or caregivers may also lack this knowledge. They may also not know that the person in their care is not having regular bowel movements.
Poor diet, low fluids, no exercise
People with learning disabilities often have restrictive diets that don’t include fruits, vegetables or enough fibre to facilitate healthy bowel function. Pica, an eating disorder characterised by a person intentionally eating non-food items, afflicts some people and causes bowel complications, including constipation. Some are peg-fed, and the food they intake may lack necessary fibre. Without prompting, people may not drink enough fluids to stay hydrated.
It may be that they are not motivated to exercise, or there may not be suitable opportunities for them to move their bodies. Co-occurring physical disabilities may make exercise impossible.
Medication side effects
Medications prescribed to some people with learning disabilities may actually cause constipation. Anti-anxiety, antidepressant and antipsychotic medications may have this effect. Medical professionals caring for the person don’t always connect the dots when it comes to medication side effects. Parents and caregivers may also lack knowledge in this area.
Poor access to toilets
It may be the case that the person lacks an accessible toilet when they need to have a bowel movement. There may be privacy issues as well that impede their ability to empty their bowels when they need to. This can lead to the individual holding poo, which exacerbates the situation.
Difficulties with taking medication
Some people might struggle to take oral laxatives. These medications come in tablet, capsule and liquid form. If the person finds it difficult to take these, this can be a huge problem. Some medications for constipation are intrusive and uncomfortable, such as laxative suppositories and enemas. These medications also may be difficult for the person to self-administer, and asking for help can be embarrassing.
Communication difficulties
Many people with learning disabilities have difficulty in clearly communicating their needs. Sometimes, communicating that something is wrong is misread by their caregivers as ‘challenging behaviour’, and the underlying cause of the behaviour goes undiscovered. Thus, the person with abdominal cramping due to constipation may shout or physically lash out, but this is misinterpreted as them simply being ‘difficult’.
Poor mental health
Depression and low mood make any person feel lethargic and apathetic. This can reduce how much they exercise and may increase poor dietary choices, as individuals suffering from depression may crave less healthy food options, for example, sweets and high-carbohydrate foods.
Constipation causes constipation
When a person has chronic constipation, faeces builds up in the lower bowel and becomes hard and impacted. This creates a roadblock that makes it impossible for new poo to pass. Additionally, this impacted stool causes the large intestine to stretch, sometimes to an alarming size. It takes a great deal of laxative medication to alleviate this issue.
Sometimes the faeces must be manually removed. Only when the hard stool has been removed and the stools from that point are made soft enough to pass easily can the person’s bowel recover from the excessive stretching and come back to normal.
Inconsistent constipation care
Chronic constipation often begins in childhood. The parent(s) or guardian(s) of the person take the child to the doctor; treatment and advice are given, and the condition is well managed at home. The caregivers oversee the child’s diet and fluid intake and administer medications (as well as potentially supplements and probiotics) to maintain the child’s healthy, regular bowel movements.
Unfortunately, when a person goes into residential care or an assisted living scenario, these regimes and routines may fall apart. This was the case for Richard Handley, who died from constipation-related complications in 2012.3 His mother, Sheila Handley, explained what happened in a video about constipation care produced by Ace Anglia.4 Sheila said that although she had managed Richard’s constipation very well at home, when he went into a care home, this management fell by the wayside.
As a result, Richard became very ill and died. His constipation had become so severe that he vomited faeces, which went into his lungs, and he drowned. This is an unthinkable way for anyone to lose their life. The fact that it was entirely preventable makes it even harder to bear.
Physiological issues
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In addition to all of the above, there may actually be physiological issues contributing to a person’s constipation. Constipation can have a neurological basis for some people with learning disabilities. The nerve signals intended to travel between the brain and the bowel may be disrupted.
For some, poor gut motility causes digestion to be slow and sluggish. Due to diminished awareness of bodily sensations, the need for a bowel movement may not be evident to the person. The person’s body may also have fluid dysregulation, which can cause dry, hard stools.
There may also be hormonal abnormalities, for example, hypothyroidism, that can have an impact on bowel health. A person with learning disabilities may actually have an abnormal gut microbiome and lack the healthy bacteria needed to keep bowel movements on track.
Embarrassment and shame
Of all of these factors, the biggest, most problematic issue is embarrassment. People don’t want to talk about poo. They don’t want to talk about their own bowel movements. Parents and caregivers may feel embarrassed about asking about and/or discussing the bowel movements of the person in their care. This creates a wall of silence and shame between adults with learning disabilities and the people who look after them.
It can feel like a violation of a person’s dignity to ask about their bowel movements. If not handled with compassion and care, parents and carers run the risk of infantilising the person in their care. This causes further embarrassment and shame for the individual.
This embarrassment can quickly lead to a person going weeks or even months without a proper bowel movement. They may behave in a way that looks ‘normal’ to the people who care for them, so it’s very easy to assume that the person is fine.
Compassionate constipation care
The more people discuss bowel movements and constipation, the easier it becomes to talk about them. Discussing a taboo or uncomfortable topic like it is no more embarrassing than making a cup of tea removes the unease we feel around that topic.
How can this topic be made easier to talk about? How can adults with learning disabilities be supported to reduce the incidence of constipation? Is there a way to more efficiently manage constipation without creating shame or violating dignity? By improving awareness and fostering a compassionate environment around discussions and care for constipation, the situation can begin to shift.
Normalise the conversation
If everyone in a home (whether it’s a family home, care home, or other residential setting) talks openly about bowel movements, it can make it easier for everyone to follow suit. The topic doesn’t need to be crude or graphic.
If they are an issue, the words ‘poo’ or ‘stool’ or ‘bowel movement’ don’t actually need to be spoken. It may be easier to say, ‘BM simply’. On the flipside, using humour may be helpful for some people. Making awkward situations funny can diffuse embarrassment.
However, conversations around constipation are managed; the most important thing is that they happen and happen consistently. Constipation care and awareness must be integrated into the ethos and culture of the setting. Conversations on the topic need to be woven into the person’s day-to-day care. Caregivers must have regular training and reminders about the signs, risks and seriousness of constipation. Information about bowel health must be part of every person’s care plan.
Use visuals
Visuals that explain normal bowel function can be used to educate everyone. Similarly, visuals that explain how to maintain healthy bowels by eating well, drinking enough, and being physically active may be helpful. These can be purchased or created by caregivers. ChatGPT can also create free, basic visuals on the topic.
The Bristol Stool Chart, which provides graphic representations of what healthy and unhealthy stools look like, is a handy tool. This chart is numbered and indicates that a ‘type four’ is normal and represents the ideal goal for bowel movements.
A chart or calendar that the person can complete on their own or with support is useful. This will quickly flag up if the person has gone too long without a poo and may need medical help. This also maintains privacy, autonomy and agency for the individual.
Protect dignity
Constipation is an extremely difficult topic. It is vital to discuss it openly, but this must not be at the expense of anyone’s dignity. Handling this situation sensitively is crucial to ensure that no one feels embarrassed or ashamed around it, and that it is easy to raise a flag when something doesn’t feel right.
Staff turnover can create issues. People living in the setting may feel awkward talking about bowel-related problems with unknown people. Again, normalising talk about bowel health and using tools like the Bristol Stool Chart and visual prompts can help with this. If everyone is regularly discussing bowel health, then a new person following suit will feel normal and maintain continuity for the individual.
Final thoughts about constipation
The number of constipation-related deaths among individuals with learning disabilities is unbearably high. It’s time to get over our embarrassment and start talking about constipation to stem the tide of the devastating statistics around this condition. The more we talk about it, the fewer lives will be lost to this entirely treatable condition.
References
- https://www.kcl.ac.uk/research/leder (accessed 11/11/2025)
- https://bjgp.org/content/72/720/348 (accessed 11/11/2025)
- https://www.bbc.co.uk/news/uk-england-suffolk-42989091 (accessed 11/11/2025)
- https://www.aceanglia.com/lets-talk-about-constipation-peer-educator-steven-interviews-sheila-handley/ (accessed 11/11/2025)
Further Resources
Constipation: common conditions made complex
NHS resources for individuals with constipation
NHS Constipation resources for carers
Suffolk Ordinary Lives ‘Let’s Talk About Poo’ campaign
LeDeR Learning into Action Easy Read Constipation Guide
The Trouble with Poo from Books Beyond Words
This article is also published in the December 2025 edition of In Focus
