As dementia develops, many unforeseen, and often unexpected, symptoms can occur. Although cognitive problems are a defining symptom of dementia, certain physical abilities often decline too, which can cause confusion and embarrassment.
When it comes to dementia, incontinence is one effect of the condition that not many people think about.
Between 60 – 70% of people with dementia will experience a degree of incontinence[i].
When incontinence occurs, it can be hard to discuss. This can be true for someone with dementia, who may not be able to find the words to talk about what is happening to them.
As a caregiver or family member of someone with dementia, it’s important to understand the challenges that your loved one may be experiencing with incontinence so that you can provide the correct support. We’ll be discussing the link between dementia and incontinence below.
What is incontinence?
Incontinence is the unintentional leakage of urine or faecal matter. We explain this in more detail here:
- Urinary incontinence - Urinary incontinence is the inability to control the flow of urine from the bladder[ii]. This may result in the occasional leak, a continued leak after going to the toilet, or a total loss of bladder control. The NHS estimates that urinary incontinence affects between 3 and 6 million people in the UK[iii]. Although both men and women can be affected by urinary incontinence, it is most common in women over the age of 50.
- Faecal incontinence - Faecal incontinence is the inability to control bowel movements. This can range from unexpected leakages of faeces when breaking wind to losing bowel control all together. Although faecal incontinence affects both men and women equally, it is less common than urinary incontinence.
- Double incontinence - Sometimes, a person may have both, which is known as double incontinence. This occurs when problems arise with the muscles and nerves that help your bladder and bowel work properly, causing urine or faeces to leak.
What causes incontinence?
Several genetic and environmental factors can cause incontinence to occur or increase the potential of developing the condition. Sometimes, incontinence is temporary, and caused by illness or physical changes to the body, such as:
- UTI - Urinary tract infection
- Pregnancy and childbirth
- Prostate issues
- Medical conditions that affect the nerves or muscles, such as diabetes and Parkinson’s disease
However, as people age, their incontinence is often a result of the damage or weakening of muscles that can occur when we get older. It can also be caused by cognitive deterioration. It’s important to note that in some cases, incontinence can be resolved. Someone who experiences symptoms of incontinence should always seek medical advice.
Dementia and incontinence?
Dementia and incontinence go hand in hand. Someone with dementia may simply forget to use the bathroom or they might feel the urge to urinate but are not able to make the connection between this uncomfortable feeling and going to the toilet.
A person with dementia is more likely to have difficulties with continence than someone of the same age who doesn’t have dementia. This is because individuals with dementia face various challenges that can interfere with their capacity to use the toilet.
Typically, people with dementia may experience functional incontinence, where their urinary system and digestive system work properly, but they lose control of their bladder and/or bowel. This is usually due to cognitive deficits, the inability to get to the bathroom in time, or being unable to use it properly[iv].
Signs of incontinence in someone with dementia
Incontinence itself can be caused by several conditions, illnesses, and diseases. In the case of someone with dementia, incontinence often occurs because signals from the brain to the bladder or bowel don’t work properly. This can mean that they don’t reach the toilet on time, or don’t know they need to use the toilet until it is too late.
There are many signs to look out for which can help to determine if the incontinence is occurring because of ‘mixed signals’:
- Not reacting quickly enough when needing to use the toilet
- Being unable to get to the toilet in time
- Being unable to explain that they need the toilet because of communication difficulties
- Not understanding cues from someone to use the toilet
- Being unable to find, identify or use the toilet. This may lead them to relieve themselves in an inappropriate place because they have mistaken it for the toilet
- Forgetting how to do the necessary things to use the toilet, such as undoing clothing
- Refusing to use the toilet, or declining help to do so – this may be because of embarrassment
- Not attempting to find the toilet – this may be due to distraction or a lack of motivation
- Embarrassment after an incontinence incident which the person has unsuccessfully tried to manage
At which stage of dementia is incontinence most likely to occur?
This depends on the person and how advanced their dementia is. For example, for someone with Alzheimer’s, incontinence is most likely to occur in the middle or later stages of the disease[v] when symptoms of increased disorientation and confusion occur.
In the case of someone with Vascular dementia, incontinence might occur because of confusion and a deterioration of their ability to judge when they need to go to the toilet – as this can happen at different stages for everyone, there is no definitive answer as to if or when someone with the condition might become incontinent.
It’s important to remember that although individuals with dementia are more likely to develop incontinence and have accidents, it is not an inevitable part of the condition.
How to help people with dementia and incontinence
Supporting an individual or loved one with dementia who is suffering from incontinence can be challenging. Fortunately, there are several things you can do to make it easier for them.
1) Seek medical advice
Because there are so many potential causes of incontinence, it’s important to raise it with your GP or another medical professional. Doing so will help to rule out any treatable issues and will allow them to suggest treatments or ways to manage the incontinence alongside dementia.
2) Be understanding about accidents
No matter how many precautions are put in place, incontinence accidents may still occur. Naturally, everyone reacts differently to incontinence incidents. Some may find it stressful or upsetting, while others may understand that it is part of their current condition. Should an accident happen, be compassionate and patient when approaching the situation.
To deal with an incontinence episode, ensure that your hands are clean. Then, use suitable skin cleaning items such as MoliCare soft skin care tissues so that the individual can gently wipe down, paying particular attention to the groin area, (support with this may be required based on the individual needs) and help them to change their underwear or pads. If they have managed to make it to the toilet, make sure to clean up after them and flush. Remain calm and understanding throughout the exchange, as recognising that they can rely on you may assist them with future incidents.
3) Make the bathroom accessible
The inability to find the bathroom can be contributed by the dementia, so making the bathroom visible and accessible can reduce the chances of accidents. Remove obstacles from paths to the bathroom and leave the bathroom door open with the light on to assist the person in locating the bathroom easily. You could also consider labelling the door with a relevant photo, such as a toilet, to help prompt recognition of the bathroom.
4) Ensure the bathroom is safe
Mobility challenges may affect the ability to get to the toilet in time for some people with dementia. To help make this easier for them, consider adding modifications that may be necessary to prevent stressful or dangerous situations. For example, grab bars around the bathroom could provide stability and reassurance, or a night light may be helpful to illuminate the room.
5) Add bathroom trips to the regular schedule
When somebody with dementia loses the ability to express the need to use the toilet, it may be in their best interest to schedule regular bathroom breaks.
For example, setting up regular toilet trips as soon as they wake up, once they’ve finished a meal, and directly before bed can help minimise incontinence accidents. Also, it’s important to learn any non-verbal cues that may indicate the need to use the toilet. These non-verbal cues may include:
- Standing up and sitting down
- Pulling at their clothes
6) Choose more flexible clothing
Clothing may inhibit the ability to use the toilet for someone with dementia, contributing to incontinence accidents. To adapt to this, try opting for clothing that is easier to put on and take off. For example, trousers with buttons and zippers may be too difficult to use. Swap them out for clothing with elasticised waistbands or easier fasteners, such as Velcro.
7) Consider their diet
What we eat and drink can affect the health of our bladder and bowel and managing the diet of someone with dementia may reduce the chances of incontinence incidents. To maintain a healthy diet, make sure they:
- Drink around 6 - 8 glasses of water a day, assuming there are no medical reasons for fluid restrictions
- Eat plenty of fibre rich foods
- Eat five portions of fruit and vegetables a day
- Avoid caffeine and carbonated drinks
- Avoid spicy or acidic foods
- Reduce liquids before bed
- Exercise regularly
For someone with dementia, incontinence can be challenging for both the person experiencing the issue and their caregivers. Although the situation may be uncomfortable, knowing how to deal with accidents in the right way and finding the right solution to help manage episodes of incontinence can reduce the severity of the situation while ensuring the comfort of the patient or individual.