Incontinence and other toileting challenges are common in people with dementia, but also an often overseen aspect of dementia care.
Incontinence generally is not the main focus area for care providers when it comes to dementia, or, it is only a focus area in the later phases of dementia. However, incontinence can start even in the early phases of dementia, and is a source of major stress for family caregivers.
It may start with a person forgetting to go to the bathroom. Maybe they can no longer find the toilet. This can be experienced as burdensome or embarrassing. But as dementia progresses, incontinence problems become more likely and more severe.
Care professionals should be aware that often, people do not ask for help with their incontinence problems. They may dismiss it as a natural thing that comes with old age. The person with dementia may not be able to register or describe the problem. And family caregivers may believe that either nothing can be done about it, or they are too embarrassed to talk about the problem.
This doesn’t have to be the case. Many things can be done to either solve incontinence or relieve the symptoms associated with incontinence, thus increasing quality of life – for patients and caregivers alike.
The first step is to understand why incontinence occurs and how to make the situation less stressful.
Find out the cause to improve quality of life – for patients and caregivers
There are ways to prevent or cure incontinence, or to make it easier to live with incontinence. It almost always starts with finding out the cause of incontinence.
Incontinence can have physical, mental or practical causes, e.g. as a side effect of medications or that the bathroom is difficult to access. Finding out the cause early makes it easier to find ways to prevent incontinence, and makes it easier to learn the many methods for living more comfortably with incontinence.
Active initiative - or why incontinence is prevalent in dementia
Going to the bathroom requires active initiative. As a caregiver, it is important to recognize and understand the importance of this, because it can relieve a lot of the frustration associated with continence care.
When it comes to people with dementia, active initiative is often no longer sufficiently present. This can have several causes:
- Apathy can be a hindrance in going to the bathroom independently. This means that a person has lost initiative due to dementia.
- Not being able to react quickly enough once they feel the urge to urinate, or not being able to communicate that they need to go to the bathroom.
- Not being able to get to the bathroom on time because of problems with mobility or pain. Moving may hurt so much that the patient prefers to pass their urine and feces than go to the toilet.
- Not being able to find, recognize, or use the toilet, often because they are confused about their surroundings.
- A previous accident or leakage episode can cause incontinence. Perhaps they couldn't find the toilet in time, or couldn't open the door once they got there. Older people often find it annoying to ask for help. They are ashamed and do not want to be a burden to others.
- A UTI may cause pain when urinating, causing a person to avoid going to the bathroom.
A less stressful experience
Going to the bathroom can become a stressful experience once dementia sets in.
Remember that incontinence is a symptom of other problems and that a person with incontinence is not doing anything on purpose. They may even have tried to go to the bathroom, and suddenly have been struck by panic. “Where is the bathroom? How do I get my clothes on and off? I’ve found the bathroom – what do I do I do now?” These are just a few examples of problems a person with dementia may face.
Fortunately, there are steps you can take to make going to the bathroom less stressful.
Here are some important points to consider:
Age-related visual impairment
Elderly people with dementia may experience age-related eye conditions such as cataracts (cloudy lens of the eye) or macular degeneration (retinal damage), making it difficult to use the bathroom.
Orientation
Especially with dementia it often happens that people can no longer orient themselves properly in a room. Even if someone has been to the toilet many times, he has to look for it every time.
Distance
If going to the bathroom is already a challenge, the distance to the bathroom alone can be a factor preventing people from making it to the bathroom on time. At home, the distance from bed or chair to the toilet is often no more than 5 or 6 meters. But in a care center this can sometimes be up to 30 meters, which can be difficult to overcome for someone who has challenges with mobility, pain, vision, et.
Choosing incontinence products
Using the correct incontinence products is important to avoid leakages and red skin.
The best choice is a personalized solution based on that is what is most suitable in each individual situation. Consider: what stage of dementia is he or she in? What is the cause and the type of incontinence? What is the caregiver situation – what is manageable for the family caregiver or the setup around the patient?
