Loving Learning Stuff – blogs

I care for a loved one who has Alzheimers. Understanding and accepting the changes has been my biggest challenge these past years. Now, having reached the place of acceptance my focus is on ensuring the day to day routines are maintained as this reduces anxiety and stress.

As the brain changes another stage emerges. It is time to learn additional coping skills as the loved one and myself are changing and new ways of dealing with the situation are being negotiated.

One day at a time is the way forward for us both. There will be good days, frustrations and bad days.

I learn a lot from Teepa Snow, having studied her books and following her blogs. The blog received today is timely. Maybe many who read Teepa’s blog on incontinence will benefit as I have.

Brain Change and Incontinence

By Teepa Snow, MS, OTR/L, FAOTA and Polly Logan, PAC Team Member

Although it is a topic that many prefer not to discuss, urinary and bowel incontinence is very common when individuals are living with brain change. Many care partners who support individuals living with brain change often struggle with knowing how to best assist when this becomes an issue.

What causes incontinence, and what can we do to offer support more effectively?

The process of waste elimination is very complex. It depends on many abilities and systems, including the digestive system, the nerve pathways between the brain and the urinary/fecal systems, time awareness, physical mobility, manual dexterity, and more. The process of elimination is also very individualized, with different patterns of timing, frequency, and quantity.

Urinary and bowel incontinence can be short-term, caused by something temporary such as an acute illness or injury. Or, it can be long-term, resulting from changes in the brain due to dementia or another condition.

Since dementia often impacts the nerve pathways between the nose and the brain, many individuals may lose the ability to recognize odors of urine and feces as being something important to notice. The ability to sense wetness may be impacted, as well. So, those living with brain change may have episodes of incontinence and not be aware.

Even before dementia, it would be a good idea for everyone who is aging to consider talking about this private topic. Sharing a little about our own patterns of intake, drinking, and going to the toilet can be very helpful. Consider creating an opportunity to talk about incontinence when it is only a possibility in the future. Try out the feel of incontinence products, so you get a sense of what they are like and how they fit or work. Awareness, familiarity, and empathy can go a long way in maintaining or improving our relationships as skills and abilities start shifting.

In the earlier states of brain change, the focus is typically on promoting continence.

This is the process of supporting the individual so that they are able to remain in control of their elimination as much as possible. Typical supportive measures may include reminding/encouraging trips to the toilet, avoiding excessive fluid intake before bedtime, medical management of constipation or other bowel issues, and possibly the use of products to control light bladder leakage. Incontinence of bowel is rather uncommon at this phase and should be explored for other possible causes.

In this stage, it is common for support individuals to find that people living with brain change are not particularly receptive to being reminded to use the toilet. As most adults have been managing their own elimination since they were toddlers, it feels very strange to be told when to eliminate. It typically is best to avoid asking, Do you want to use the toilet? or Do you need to use the toilet?, as the individual may very well respond, No, I don’t.

Instead, use phrases such as Let’s stop in here and just try to go. Pointing out accidents or shaming the individual is typically ineffective and may lead to the person hiding soiled clothing for fear of being shamed. When out and about with the individual, bringing along an extra set of underwear and pants, along with a sealable plastic bag, is a supportive measure to consider.

In preparation for the further use of incontinence products, one recommendation to help people make this transition, is the use of absorbent underwear. Absorbent underwear is a more recently developed product that is quickly becoming widely used. They look and feel like typical underwear, in a variety of styles, except that they are made of a more absorbent material and usually also contain a thin, extra-absorbent layer in the areas most likely to encounter wetness. This type of product can be exceptionally helpful for men, who are typically unaccustomed to wearing anything padded (unlike women who typically have previously experiences with pads due to menstruation or childbirth). Click here for an example of such a product for men, and click here for an example of a woman’s style.

Absorbent underwear can be incredibly helpful for getting people accustomed to wearing something other than the underwear that they have always worn, and can be very effective for light bladder leaks. You might say something like: Say, they’ve developed this new type of underwear – I wear them myself sometimes, as my bladder isn’t always perfect. Let’s try them out and see what you think. As urinary incontinence progresses, adding an incontinence pad to the absorbent underwear is often an effective option.

In the later states of brain change, the focus shifts to managing incontinence.

During the later states of brain change, individuals often further lose the ability to control and manage their own elimination. Typically, urinary incontinence occurs first, then bowel incontinence. At this stage, the focus shifts to managing incontinence. This may involve the use of incontinence products such as larger pads, pull-up pants or briefs, bed or chair protection, specially adapted clothing, and skincare and hygiene products.

When protection is required beyond what absorbent underwear and pads can provide, the next recommended step is pull-up pants, which have an elasticized waistband and pull on and off like underwear.

At the final stages of brain change, briefs are often used, which have tabs to make them easier to remove while an individual is laying down. Or, the choice may be made to use surface coverings that are highly absorbent, reducing the need to move the person as much during hygiene practices.

One important aspect of managing incontinence is working to avoid skin breakdown.

The ammonia in urine, combined with wetness, can easily cause skin irritation and ulceration. Good quality incontinence products wick the moisture away from the skin and also provide a barrier layer to trap in both odor and bacteria. High-quality products also hold significantly more liquid, allowing decreased frequency of changes, especially overnight when changes may be more challenging. Two examples of brands with higher-quality products are: Seni and TENA.

When trying to introduce a new incontinence product to an individual living with brain change, here are a few suggestions that may improve the chances of acceptance. You may wish to let them put on the underwear/product they are used to wearing first thing in the morning. Then later, in the bathroom, hand them the new item and say something like, Here you go, try this one. The doctor wants us to try these because they help you to avoid bladder infections. To encourage continued use, try folding the products and placing them in a drawer, if that is how the individual is used to finding their underwear. Keeping some handy in the bathroom is typically helpful, as well.

Even though managing incontinence can be a challenging endeavor, it is an important aspect of supporting an individual living with brain change. Educating yourself about the various product options, and avoiding shaming or telling the person what to do can be incredibly helpful in offering effective support.

Additional Resources:

• What to Know About Dementia and Incontinence from Teepa’s Dementia Care Partner Talk Show (Podcast)
• Elimination Lab 101: Dementia and Incontinence, 8-part series (Video)
• How to Help Males Living with Brain Change Manage Incontinence (Video)