Who knew that understanding the stages of incontinence could make such a difference in our caregiving journey?

As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned incontinence is an inevitable — and can be — a challenging part of our journey. It’s a reality and a topic that’s not often discussed. It’s helpful for us to be prepared to navigate incontinence with compassion, grace, and dignity for our care receivers — and for us!

We are Nancy Treaster and Sue Ryan. Through our experiences, we’ve developed four tips to help you navigate the pre-incontinence and early incontinence phases on your caregiving journey.

Before we introduce your tips, it’s helpful to understand what we mean by ‘pre-incontinence’ and ‘early incontinence’.

Pre-Incontinence

We coined this term because it’s an important phase — especially for us as caregivers. This is the phase before actual incontinence begins, when our care receiver is showing signs incontinence may be on the horizon. It’s important for us to be monitoring our care receiver when they’re still able to know when they need to go to the bathroom. What is their normal schedule? Are there signs they show that indicate they need to go? As the diagnosis progresses, we’ll begin to notice them not knowing what to do and if we already know their normal routine, we can more easily assist them with maintaining it.

While our experience with this phase is that it began about 3 to 3.5 years after the diagnosis, because each diagnosis and each person is different, focus on the signs and not the timeframe.

Signs include:

• Using the trash can instead of the toilet for toilet paper
• Not flushing the toilet
• Resisting drinking to avoid bathroom trips
• Looking around anxiously (potentially for a bathroom)

Early Incontinence

When actual incontinence begins, it usually starts with urinary incontinence. Your loved one may still be trying to find the bathroom but often doesn’t make it in time.

Signs include:

• Not getting to the bathroom fast enough
• Holding their stomach, bottom, or between their legs

Let’s explore your four tips to help you navigate these phases with more confidence.

1. Make it Easy to Find the Bathroom

Yes, to us this sounds simple. To our loved one, they are disconnecting with the signs their bodies are telling them they need to go, and the steps to use the bathroom. One of the most effective ways to support your loved one during pre-incontinence and early incontinence is by making the bathroom as accessible and easy to find as possible.

Nancy’s Experience:

I learned that the bathroom needs to be like a beacon, especially at night. Here are some strategies I found helpful:

• Leave the bathroom light on at all times — day and night.
• If the bathroom isn’t ensuite (connected to the bedroom), make the path to it as straightforward as possible.
• Use childproof doorknob covers on other doors along the path to prevent confusion.
• Install tall pet gates to block off other hallways or areas.
• Remove locks from the bathroom door to prevent accidental lock-ins.
• Remove rugs from the floor so they don’t trip.
• Eventually, you may need to remove the bathroom door entirely.
• Take the toilet lid off (not the seat) to make the toilet more visible and accessible.
• Encourage sitting on the toilet for all bathroom visits to minimize mess.

Sue’s Experience:

I found simplifying the bathroom environment really helped reduce accidents. As the disease progressed, my loved ones were more easily distracted, and it was not as easy to get them back to the focus of actually going to the bathroom:

• Remove distractions from the bathroom floors, walls, counters. This can include items such as laundry hampers, scales, decorative accessories, glasses, toiletries.

2. Schedule Bathroom Breaks

Establishing a consistent bathroom routine can significantly reduce accidents and make the transition into full incontinence more manageable.

Sue’s Experience:

I started observing and tracking my husband’s bathroom patterns early in his diagnosis. This allowed me to:

• Establish a regular bathroom schedule while he could still understand and cooperate.
• Identify foods or activities that affected his bathroom needs.
• Share this information with doctors and other caregivers.

As the disease progresses, your loved one may stop recognizing the need to use the bathroom. Having an established routine becomes even more important at this stage, because we’re helping them be proactive. It’s also helpful for us because if they need to go and don’t get to the bathroom, they’ll just go. My husband once used the Grandfather clock because he thought it was a urinal. My Dad used his favorite chair because he remembered he needed to sit and it was there.

Nancy’s Experience:

I found that frequent bathroom trips, even if just to check, were more effective than waiting longer between visits. While some caregivers prefer less frequent changes to avoid constantly changing protective underwear, more frequent trips can help prevent skin irritation and maintain comfort.

Additional Tips:

Watch for signs your loved one is looking for a place to relieve themselves.

• Tremendously valuable — clearly communicate you’re taking them to the bathroom to avoid confusion or resistance.
• Speak in a calm and reassuring voice so they stay calm.
• Get to their eye level so they’re coming with you not being led by you.
• When incontinence begins in earnest, switch to disposable incontinence underwear (one brand is Depend™).
• If you go out, bring a bag with a change of clothes, extra underwear, and cleaning supplies.
• Check for family bathrooms at your destination to be able to accompany your loved one so they can go before an accident, and for easier cleanup if accidents occur.
• Try to schedule outings around your loved one’s bathroom schedule to minimize accidents.

3. Simplify Cleanup

As incontinence progresses, accidents will happen. Being prepared can make cleanup easier and less stressful for both you and your loved one.

Sue’s Experience:

I found these strategies helpful for simplifying cleanup:

• Use mattress pads or disposable pads on furniture.
• Old towels are our new best friends — Keep a stack of old towels and a lined bucket nearby for quick cleanups. If you aren’t able to clean the floor right away, old towels over the accident help reduce it getting tracked around the room.
• Put away the good furniture. I bought simple, easy-to-clean chairs instead of valuable or upholstered furniture.
• Keep cleaning supplies like Swiffer WetJet™ or Bona™ mops easily accessible.
• Use pet-specific cleaning products like PineSol™, Fabuloso™, or Pooph™ for odor control.

Nancy’s Experience:

I had to adapt my strategies as my husband’s incontinence progressed:

I moved valuable furniture to a separate “chair room” to protect it.

For carpet cleaning, I used pet-specific products like Resolve Urine Destroyer™.

I invested in a Bissell Pet Carpet Cleaner™ for frequent deep cleaning.

Eventually, I used large washable pet pee pads (in dark colors to avoid confusion) next to the bed.

Additional Tips:

Consider using duct tape to combine smaller pee pads for larger coverage areas.

Look for extra-large pee pads designed for this purpose (we’ll include a link in the show notes).

Limit access to areas of the house not necessary for daily living to reduce potential accident sites.

Use bright lighting and minimize shadows to help guide your loved one to the bathroom at night.

4. Think Positively and Have Lots of Grace

Perhaps the most important tip of all is to maintain a positive attitude and extend grace to both you and your loved one.

Sue’s Experience:

I learned it’s helpful to:

• Give ourselves grace. This isn’t something we’re trained for, and for many of us, not naturally comfortable with.
• Reach out for support if you feel overwhelmed. This can be:
• Asking for guidance in support groups — both for the emotions of this as well as the process of it.
• Bringing in professional caregiving support to walk with you through it so you learn how to and aren’t trying it alone in the beginning.
• Talking with friends about how you feel changing your loved one.

Recognize this might be an inflection point in your caregiving journey. It’s okay if you need to bring in additional help or consider a care community. You may not be able to navigate this component of caregiving either physically and/or mentally, and/or emotionally. It’s ok. Seek guidance. Reach out to us, reach out to others — reach out for support!

Nancy’s Experience:

I found it equally important to:

• Give your care receiver grace. Remember, they would prefer to use the toilet properly if they could. In the early phases, they are often feeling embarrassed or ashamed. It’s uncomfortable for them and for us.
• Be patient and loving, even when it’s difficult. Getting upset only increases everyone’s stress.
• Use positive language and praise, even for small successes or attempts.

Final Thoughts

Navigating pre-incontinence and early incontinence in Alzheimer’s and dementia care can be challenging. With preparation and the right mindset, it’s manageable.

Key points we’re reinforcing throughout the entire incontinence series:

• Start preparing early, even before signs of incontinence appear.
• Make the bathroom as accessible and obvious as possible.
• Look out for trigger foods and drinks.
• Establish and maintain a consistent bathroom routine.
• Be prepared for accidents with easy cleanup strategies.
• Always prioritize dignity — use terms like ‘underwear’ instead of ‘diapers’ or ‘pull-ups’.
• Give yourself and your loved one grace as you navigate this phase.
• Stay positive and use encouraging language — even in challenging moments.
• It’s okay — it’s the wise choice — to seek additional help and consider professional care. This is a personal decision based on your unique situation.

This phase, while difficult, does eventually become more manageable. You’re not alone in this journey. Reach out to support groups, healthcare professionals, or fellow caregivers for advice and emotional support.

If you want to watch or listen to the podcast for this second topic, please click here.

Each additional podcast will be found in the same place. The five topics of the incontinence series are:

• Incontinence — Preparing
• Pre-Incontinence and Incontinence Begins
• Cleaning Your Care Receiver and Urinary Incontinence
• Bed Bound and Bowel Movement Incontinence
• Incontinence Overnight

If you have tips you think others would benefit from, please share them on our Facebook page.

If you’d like more information on this topic listen to the podcast here.

We’re all on this journey together.

Additional Resources Mentioned

These resources contain affiliate links so we may receive a small commission for purchases made at no additional cost to you.

• Child proof door knob cover or double deadbolt locks for external doors
  • Child proof door knob covers here
  • Lever child proof door knob covers here
• Extra tall pet gate from (40” to 70”) – 57” here
• Disposable incontinence underwear
  • For women here
  • For men here
• Pads
  • Mattress pads
    • 34”x36” here
    • 72”X36” here
  • Disposable incontinence pads here
  • Brown large pet pee pads here
• Easy mops
  • Swiffer mop here
  • Bona here
• Hard surface cleaners
  • Pine Sol here
  • Pooph here
  • Odoban here
  • Fabuloso here
• Carpet cleaning
  • Resolve Urine Destroyer here
  • Resolve Ultra Pet here
  • Bissell Pet Carpet Cleaner here
  • Resolve Urine Destroyer Carpet Cleaning Machine Formula here