Incontinence and Why You Should Talk About It

Incontinence is not a sexy topic and as a result, it’s not often talked about. I remember the first time I saw incontinence supplies in the cupboard of my dad’s room in the nursing home and I thought, ‘my dad needs incontinence supplies now?’ I even thought that maybe they were for his roommate and were just being stored on my dad’s shelf. I had seen the supplies frequently on carts and in other people’s rooms and knew that incontinence was common among older people with dementia but I had never made the connection that my dad would develop this symptom. 

I didn’t have to manage incontinence while dad was living at home. But if I had, I wouldn’t have known where to start because no one had ever talked to me about incontinence, what it is or what you can do about it. 

What is it?

Incontinence is when a person doesn’t have control over when they go to the bathroom. Often we think that incontinence only applies to the bladder but it can also apply to the bowel. If a person doesn’t have control over either, the term double incontinence is sometimes used. Incontinence is common in both persons with and without dementia and although it’s more common in older adults, it’s not an inevitable part of aging. 

Different Types of Incontinence

1. Stress - think about the time you laughed so hard you had to squeeze your legs together; more common in women 
2. Urge - Sudden and strong urge to urinate and the need to urinate frequently, sometimes during the night; men with prostate problems are more at risk for this type of incontinence as well as overflow incontinence. The urge may exist even when the bladder is empty due to the brain’s inability to suppress the sensation of having to pee. This type is more common in older people.
3. Overflow- When your bladder doesn’t empty completely so there’s constant dribble.
4. Functional - When you can’t make it to the bathroom in time due to a physical or mental condition; you may not be able to undress quickly enough due to arthritis, for example.  

Reasons for Incontinence

There can be many reasons for incontinence including medical reasons such as a UTI, stroke, Parkinson’s disease, enlarged prostate, and other neurological conditions like MS. It can also be a side effect of medication, and a person’s diet in terms of how much they drink and what they eat, can also be factors. If incontinence begins to develop, be sure to speak to your doctor to discuss possible medical reasons and treatment options. 

With dementia, there can be many reasons for incontinence as well. The person may not be able to communicate their need to go to the bathroom. They may have mobility problems that cause them to not get to the bathroom in time. They may not know where the bathroom is or recognize the toilet. They may need help getting on the toilet. They may be too embarrassed to ask for help. They may not feel the urge to urinate. Ultimately, dementia is a progressive condition of the brain. The brain sends signals to all our organs which control bodily functions. As dementia progresses, these signals can become scrambled and bodily functions are no longer controlled as well as when a person does not have dementia. There can also be a combination of factors going on between cognitive changes due to dementia and other medical conditions that the person has. As with many symptoms, it can be difficult to separate out exactly what is causing the incontinence. An assessment with a doctor is a good place to start.

Tips for Caregivers

1. Always strive to maintain dignity of the person. It can be an embarrassing and awkward situation that a person may try to avoid dealing with or talking about. Don’t make a big deal about it. Focus on their quality of life and how little changes may make a big difference. 
2. Talk to the doctor about medical causes and treatments that may make incontinence better and/or worse. Some medications can cause incontinence to worsen so talk about the medications and what options exist. Never assume that nothing can be done about it or that it’s just part of getting old.
3. If you’re a primary caregiver and you’re paying for incontinence supplies, keep track of this expense as it can add up. Talk to other family members or the Power of Attorney about this expense and how it will be managed.
4. Shop around for supplies. Prices on supplies can vary dramatically from store to store.
5. If you leave the house with the person you care for, always carry incontinence supplies, bathroom wipes and a change of clothes in the car with you or in a backpack so you can help the person get cleaned up if an accident happens while you’re out.
6. Please don’t use the term adult diapers. Diapers are associated with babies and no one wants to be made to feel that they’re reverting back to being an infant. It’s about dignity and not using language that is infantilizing to people with dementia. There are better words that you can use such as disposable underwear or undergarments.
7. Menstrual products tend to be less expensive than incontinence products (although still pricey too) and depending on the degree of leakage that is experienced, the absorbency of these products may be sufficient. 
8. Easy to remove clothing is now available (although can be expensive) so consider if it will make a difference in helping a person undress before toileting. Or maybe you or someone you know can make minor modifications to clothing with velcro or other easy to undo fasteners on pants. 
9. Keep a continence diary. What happens as the person goes through the day? Are there patterns or triggers that can be identified? This can be helpful to a doctor or other health care professional in coming up with solutions. 
10. Simple visual cues like a picture of a toilet on the bathroom door or a toilet seat in a contrasting color can help a person locate the bathroom. 
11. Perhaps one of the most effective strategies to help with incontinence is to establish a regular routine of helping the person go to the bathroom after every meal and during other frequent times during the day. A routine can help eliminate many of the accidents that occur. 

Why Talk about Incontinence?

Incontinence is an important subject to discuss because it’s estimated that about 60-70% of people with dementia will develop incontinence as the condition progresses. 

Toileting is one of the five activities of daily living (the other four are dressing, bathing, feeding, and mobility). Over time, activities of daily living become impaired and a person with dementia will need more help in each of these areas to live at home safely. It’s important to be honest about how much help and what type of help is needed in each area so that you and your loved one can get access to resources and support that will make a difference and relieve the stress.

Incontinence and the inability of family members to effectively deal with it at home is a major precipitating factor for a person having to move from their home to a long-term care facility with nursing support. 

If you’re a health care provider, please address this topic with sensitivity and always with the goal to maintain dignity. Don’t talk about the person to the family member or talk over or around them as if they’re a child or not even in the room. But DO address it. Normalize the conversation and help people manage it. By doing so, you may help someone maintain their independence longer than would otherwise be possible.  

Incontinence, if not handled well can cause other medical problems like skin breakdown and UTIs.

If your loved one lives in a nursing home, incontinence can affect a person’s level of comfort and ultimately their quality of life. Dad would often tug at his pants and be visibly uncomfortable. Lack of comfort can be an unmet need that may cause a person to do things or behave in certain ways. The nurse talked to me about the supplies that they use and showed me the product - it was very bulky. From then on, I purchased a pull-up disposable underwear that was much more suitable and comfortable for dad. He stopped pulling and tugging on his pants and appeared much more at ease and comfortable. 

Caregivers need help and support in many areas, this being one of them. Providing care in such an intimate area of the body is extremely difficult and out of the comfort range for many people. They need help understanding that the person with dementia can’t prevent the accidents, AND they also need to know that it’s okay for them to find this difficult; they’re not inadequate as a family member or caregiver if they don’t know what to do.

Strategies are available to make incontinence less embarrassing, stressful and awkward for everyone. By staying silent, you’re not doing yourself or your loved one any favors. 

This article is for informational purposes only. Readers should not use the information contained herein for diagnosing a health problem or disease, and should always consult with a doctor or other health care professional for medical advice or information about diagnosis or treatment.

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About the Author:

Rosanne Burke is a certified dementia care consultant, trainer, speaker, and writer. She helps family caregivers feel more confident and competent with the training, resources, and support needed to successfully care for a person with dementia. She speaks and writes on dementia, delivers workshops, and consults with business owners who want to make their business compassionate for caregiving employees and dementia-friendly. If you want to know more about her services, would like her to write an article for you or wish to invite her to speak at your event, email Rosanne at [email protected].