Managing Incontinence in Dementia Patients – Experiences and Advice from Real Caregivers

Advice for incontinence care in the home is surprisingly limited, especially for patients with dementia. The research that has been done tends to focus on residential care settings.

However, dementia care at home has different dimensions. Caregivers are often under-trained about how to approach dementia challenges.

The familial relationship between caregiver and care recipient can also create additional tension. While some seniors feel more comfortable with family members, others may not want to have a family member involved with anything as intimate as toileting.

In this post, we’re taking a detailed look at the intersection between dementia and incontinence – and what this means for caregivers. The discussion includes information about the different types of incontinence and ways to tackle the problems.

Table of Contents

• The Basics – What You Can Expect
• Incontinence Can Be Managed
• Caregiving Approaches
• Environmental Changes
• Products to Support Continence
• Hygiene Considerations
• Important Factors to Consider

The Basics – What You Can Expect

We’re going to start at the very beginning because incontinence isn’t just a single problem. Incontinence can take different forms and have a variety of causes.

Understanding what is occurring is critical for learning the best ways to respond.

Types of Incontinence

Incontinence falls into a variety of different categories, with their own causes and consequences.

Urinary Incontinence

• Urgency urinary incontinence – the inability to ‘hold on’ for long enough to reach the bathroom.
• Overflow incontinence – where small leakage occurs when the bladder is full.
• Nocturnal enuresis – involuntary loss of urine while a person sleeps.
• Stress urinary incontinence – where urine leaks with events like laughing, sneezing, coughing or exercise.
• Functional incontinence – cases where a person cannot reach the bathroom in time to prevent urine loss, but there is no physiological basis. This can occur due to mobility challenges or a variety of other factors.

Some people experience overactive bladders. This tends to increase sense of urgency and the need to urinate frequently. The problem can sometimes occur due to an enlarged prostate, or for other reasons.

Fecal Incontinence

• Passive incontinence – where feces are passed involuntarily and without awareness.
• Urge incontinence – where feces are passed despite active retention effects.
• Seepage – where feces leak after an otherwise normal bowel movement.

Dementia and Incontinence

Despite common assumptions, dementia does not cause incontinence as such. Instead, dementia increases the chance of toileting problems for a variety of reasons.

Key issues include the following:

• Inability to get to the toilet in time, often due to mobility challenges.
• Not be able to react to the sensation of needing the toilet fast enough.
• Not attempting to find a toilet (sometimes due to lack of motivation, depression or distraction).
• Not recognizing the sensation that they need the toilet.
• Being unable to communicate the need to use the toilet.
• Inability to find, recognize or use the toilet (this can sometimes result in a person urinating in an inappropriate place if they have become confused about where they are).
• Being unwilling to let other people help.
• Not understanding a prompt to visit the bathroom.
• Not being able to undertake all the associated activities, like taking clothing off and personal hygiene.

Because these issues are so different from one another, the solutions needed can be different as well.

Incontinence Can Be Managed

While dementia is a progressive disease, incontinence is not an inevitable outcome – nor is incontinence always irreversible when it does occur.

Instead, dementia outcomes are strongly related to the person and the environment that they are in. For this reason, the abilities of a person with dementia can fluctuate across time and circumstance.

Outcomes for incontinence fall into four main categories.

• Independent continence. No involuntary loss of urine or feces. No need for support by others. The person can take any needed approaches themselves (e.g. toileting aids).
• Dependent continence. No involuntary loss of urine or feces. Support is needed or provided by another person.
• Independent contained incontinence. Some involuntary loss of urine or feces. The individual is able to take necessary measures (e.g. continence aids like pads)
• Dependent contained incontinence. Some involuntary loss of urine or feces. Support from another person is needed.

The Solutions Depend on the Situation

Incontinence is often the result of multiple factors. For example, some people may have a sensitive bladder, be easily distracted and have difficulty getting to the bathroom on time. Such a combination creates a high chance of accidents.

However, each of the challenges can be addressed.

In the next sections, we’ll highlight key products that can help with incontinence, along with approaches that caregivers can take.

Some of the time it may be possible to eliminate incontinence entirely or dramatically decrease the frequency of problems. Other times, the focus will be on managing incontinence instead.

Caregiving Approaches

Encouraging and reminding seniors to use the bathroom is one of the first caregiving approaches. This is particularly important for dementia patients, as they may not be aware of what the sensations mean or may become distracted.

The following are useful strategies for caregivers:

• Pay attention to behavior. For example, some seniors become more agitated when they need to go to the bathroom. Others may pull at their clothes or appear nervous.
• Watch liquid intake. Avoiding dehydrating is important, but too much liquid means more bathroom trips and more stress.
• Limit caffeine and alcohol in the afternoon and evening. Caffeine and alcohol both make sleep more difficult and can increase the need to use the bathroom.
• Be patient. Using the bathroom may take your family member some time. Rushing them isn’t helpful and could draw out the process.
• Stick to a routine. Keeping to a routine can be immensely helpful, even if this sometimes means taking your loved one to the bathroom when they don’t think they need to use it.
• Respond quickly to bathroom requests and accidents. Accidents cause skin irritation and can increase the risk of a urinary tract infection.
• Look for what works. The best strategy is different from person-to-person. For example, some people may say that they don’t need to use the bathroom, but may willingly accompany you (and then use the bathroom at the same time).
• Talk to their doctor. External factors can contribute to incontinence challenges too, such as medications or health conditions. A doctor may be able to advise on approaches to reduce such effects. For example, occupational therapy can sometimes be useful.

Being kind and caring is important too, especially when accidents occur. Being angry or critical certainly won’t decrease the frequency of accidents. After all, they’re not something that your family member wants to happen either.

Taking Them To The Bathroom

Many caregivers find that they need to go into the bathroom with the senior and stay the entire time (I know, I know, this isn’t a task that any of us especially wants to do).

Making the bathroom environment safe seems to help. Caregivers mention techniques like:

• Playing soothing music
• Giving their family member something to read (even if they can’t read anymore – as there is still comfort to the routine)
• Singing to or with the senior
• Having a sense of humor
• Maintaining a pleasant tone of voice
• Keep the toilet seat warm
• Using easy wardrobe choices like skirts or elastic waist band pants (adaptive clothing could also be useful)
• Making sure that the room isn’t too cold
• Have something for the them to hold, such as a railing or a foam tube. This is especially important if you need to help with cleaning too.
• Using a bidget seat to help with cleaning.
• Promote sitting (for men). While men typically stand to urinate, sitting can be more practical when balance is an issue.

For that matter, anything that removes even a small stress trigger can make trips to the bathroom much easier.

Caregivers talk about using a combination of approaches to make the process easier and less stressful.

Environmental Changes

Making the toilet easier to find and use can make a huge difference to incontinence problems.

Key approaches include the following:

• Location. The bathroom should be close to the senior’s room and on the same floor.
• Lighting. Make sure that the path to the bathroom is lit, even at night. Reflective tape and motion-sensing night lights can be helpful. Having a night light in the bathroom is useful too.
• Raise the toilet. Various chairs and toilet seats can raise the height of the toilet seat, making it easier to get up and down from.
• Grab bars. Grab bars in the bathroom can help with movement.
• Watch out for mirrors. Mirrors in the bathroom can sometimes make it seem like the bathroom is occupied.

Products to Support Continence

Continence products fall into two general categories.

The first aims to prevent accidents from happening, while others are designed to contain any spillage instead. Some key types of products are discussed below.

The best product style is going to depend on your situation. In some cases, you might be using a combination of the two.

Toilet alternatives

When getting to the toilet is challenging, especially at night, alternatives within the bedroom can be used.

Commodes

Some commodes are designed to be used as toilets in the bedroom (or another room). They will typically have a pot that can be emptied the next day.

While some people may find the idea embarrassing, commodes do remove the problem of needing to find the bathroom in a hurry.

Urine Bottles

These can be a simple solution for men that need to pee during the night. There are various specially designed bottles (like these ones) which are sturdy and may have handles.

Disposable urine bottle bags are another option. This style uses an absorbent pad and is more similar to a bag than a bottle. The approach makes cleanup much easier for caregivers. There is a wider opening too, which can make the bag easier to use than a bottle.

However, even a wide necked drink bottle can work, as long as the lid is easy to screw and unscrew. Emptying and disinfecting the bottle is easy enough.

There are portable female urine bottles too. These are similar, although the mouth has a more specialized design. Some men may find female urinals easier to use, as these have a wider opening.

Urine bottles won’t be suitable in all situations. Using them well does require a little coordination. The style can also be too unfamiliar for many dementia patients (especially for females).

Urine Collection

Various products can be used to capture involuntary release of urine (and often feces too). Adult diapers are an especially common approach. They can become essential for regular incontinence, although some adults resist wearing them.

• Male continence sheathe. These can be worn over the penis and are attached to a leg bag. They are ideal at night, especially when getting out of bed is difficult.
• Bed pads and mattress collectors (like these from NorthShore). These help to keep the mattress dry in case of any accidents. They also make cleanup much easier. They can be very important at night time, when everyone is tired.
• Pads for chairs. Using pads on other locations can be useful too, such as chairs. Some pads are simply large squares, so you can use them in whatever situation is most appropriate.
• Adult diapers/Pull Up Pants. While the idea isn’t appealing, products like Depend or NorthShore briefs can be essential for people with incontinence. There are many version to choose from, including ones that very discreet.
• Pads. If your family member doesn’t like the idea of an adult diaper, you may be able to insert an absorbent pad into their regular underwear. This idea is often more acceptable, especially for females (as the products can be similar to what they used when they had periods).

Hygiene Considerations

Hygiene is a related challenge that we need to talk about.

Alzheimer’s patients will often struggle to clean themselves completely, even if they have no continence challenges. The issue can get worse when incontinence is a factor too.

In cases like the one above, providing directions may simply not be enough.

Alzheimer’s suffers will reach a point where they are unable to follow instructions, even when these are simple. This means that caregivers often need to step in and help with the cleaning process.

While the idea can seem overwhelming at first, some caregivers find that the process isn’t as bad as they imagined.

In other cases, the process may be more difficult. It seems like being consistent helps.

Bathroom battles like these are sometimes the reason that families turn to managed care solutions. After all, there are serious health risks linked to not cleaning properly after a bowel movement.

For that matter, some seniors respond better to bathroom help from a professional, rather than a family member.

Important Factors to Consider

We’ve talked about many aspects of incontinence in this post, along with products and potential solutions. By this time, the whole field might start to sound pretty overwhelming.

One of the best things to do is to simply take the process one step at a time.

Begin by paying close attention to what is happening with your family member. When do incontinence issues occur? What is happening at the same time? How does your family member respond to prompts?

Observation can help you to determine possible areas that may be contributing to the incontinence. This gives you the information that you need to move forward.

It may take time to find solutions, along with plenty of trial and error.

Be patient and gentle. This is a challenging area for everyone involved.

Things Change

The progressive nature of dementia means that problems will crop up again, perhaps in a different form. Solutions that are effective at one point in time might be ineffective later on.

As such, it’s important to pay attention to what works and what doesn’t.

Adapt your approaches accordingly.

Incontinence has Social and Psychological Impacts

There are strong social expectations around toileting. Toilet training is seen as a key developmental step for children, one that highlights their growing independence.

Caregivers and seniors often see any loss of continence as the beginning of irreversible decline. Seniors may also be unwilling to accept support in such a private area or even to admit that they are struggling.

Such patterns can also make the use of continence aids difficult.For example, some people do not consider a commode or a bed pan as a toilet and may refuse to use one.

Yet, as we’ve shown in this post, incontinence can be managed, even for dementia patients. The right approaches can help to maintain the dignity of the care recipient.

Your Own Responses

Caregivers vary in their responses to incontinence care.

Some take a clinical approach, focusing on the idea that toileting is just another aspect of life.

I’ve found this to be true as a caregiver myself. After a while, even things that were once gross stopped being so. I did consciously choose to view the process this way, as stressing about it felt impractical for everyone involved.

Others view direct continence care as degrading, humiliating and dirty. This is particularly true when dealing with cleaning up after fecal incontinence.

If you struggle with this area, talking to a therapist may be helpful. You may find that some of your responses are linked to other areas, such as fears around disease progression and lack of control.

Even if you do struggle with the idea of continence care, focusing on the struggle generally isn’t helpful. Negative self talk tends to be self-reinforcing, so you end up focusing on the challenging areas more than you would otherwise.

Some caregivers mention that keeping the mood light makes the process easier for all involved.