Late-Stage Dementia Care: 4 Tips for Overcoming Challenges

Late-Stage Dementia Care: 4 Tips for Overcoming Challenges post page

By Dan BulgarelliJuly 21st, 2021

Late-Stage Dementia Care: 4 Tips for Overcoming Challenges

Strategies for a better care experience for both you and the person in your care

By Dan Bulgarelli
Have you ever run into challenges caring for a person in the later stages of dementia? When caring for and supporting someone living with Alzheimers or another form of dementia, it can be challenging – for both you and them. This is especially true as the dementia progresses and your loved one requires more hands-on support for activities of daily life, or when medical issues become more frequent and difficult.

Teepa Snow has long taught us that we need to focus on a person’s remaining abilities far more than on what dementia is robbing them of. This can become a more difficult task as a person starts to reach the later stages of the condition. There can be frustration on both sides as things just aren’t the way they used to be, and it’s getting more difficult for both of you.

So, what can you do?
1. Let go of the way it should be
Image of hands with a sign that reads "let it go"We can get so caught up in how things should be done, how things have always been done, that we can lose sight of the goal. One example of this, and something we get a lot of questions about, is the challenge of showering.

Showering is something that most of us have done regularly, maybe even daily, for most of our lives. As a caregiver (or care partner, as we say at Teepa Snow’s Positive Approach to Care®), you want them to shower and they don’t want to. Cue a challenging situation. Here’s a question for you – why do they need a shower? To get clean? Is a shower the only way to get clean? (For more showering tips, be sure to read tip #3 of this post.)

When we get down to the basics, and let go of how we think things should go, we can start to find other solutions that still get us to the desired end result.
2. Change Your Communication
An image of a street sign that says "slow down"As your person’s dementia progresses, their ability to process and understand your words will decline. This means you will need to slow down, use fewer words, and use more visual cues.

Remember that your person may need up to 10 seconds to process the message you give them and then respond. The hardest part is to avoid giving them the answer. What do I mean by that?

If you ask a question while you nod and smile, they will probably nod and smile back, not even knowing what you asked. It may seem like they are agreeing to do what you asked, but then won’t do it or are surprised when you start.

Instead, be aware of your body language. In addition to words, you may also want to give some visual cues to help the person understand. Give them the time to process your words and to formulate a response. Those few extra seconds reduce the risk of miscommunication between you two, and decrease the likelihood of the person in your care being surprised by your actions.
3. Plan ahead
An image of a woman's hands writing on a plannerThroughout our lives, we grow accustomed to how we do things such as toileting or bathing, so we don’t have to give it a lot of thought. When someone is in the later states of dementia, those same thoughts and actions may not apply.

On a recent episode of the Dementia Care Partner Talk Show Podcast, episode #105, Teepa and Greg discussed some of these situations.
  • An image of a restroom signToileting time and place – As the connections in the brain deteriorate in the later states, a person may not be able to interpret the sensation of a full bladder. Additionally, they may no longer be able to sequence through the process of rising from where they are, moving to the bathroom, removing the appropriate clothing, using the toilet, redressing, and moving on with their day. That is a lot of steps we take for granted! If all of those steps aren’t followed in the precise order and timing needed, you can have a mess on your hands.

    So what can you do to support your person? Well, this is where your healthy brain comes in. You need to be aware of your person’s timeline:
    How long has it been since they’ve gone?
    What have they had to drink?
    How long will it take me to get them up and to the toilet?

    Keeping all of this in mind isn’t easy, so I suggest trying to keep to a schedule. If your person enjoys coffee or tea, be prepared to use the toilet soon after. Use some of Teepa’s Positive Action Starters to get them up and then provide the necessary cues and support to use the toilet.

    (Looking for more tips on toileting? Watch this 22-minute video with Positive Approach to Care (PAC) Team Members who talk about How to Assist Someone in the Bathroom.)
  • An image of a bath spongeGetting Clean – as I mentioned above, we, as care partners, can get hung up on showering. What we need to ask ourselves is what is the end result we want to see? If we are simply looking to help them get clean, do we need to have them take a shower if they don’t want to, OR are there ways we can help them get clean that are more comfortable for them? A shower stall can be a scary place for many reasons:
    • People Living with Dementia may not able to see the water, so the shower stream feels like many little darts coming out of nowhere
    • Slippery floors are especially treacherous if balance is already an issue
    • It can be cold when removing clothes and waiting for the water to warm up
  • If your person is still interested and willing to take a shower, try having everything in place that you may need. Warm up the water and the bathroom ahead of time, so your person isn’t feeling cold as they undress. If the showerhead is adjustable, put it to a setting that is softer as it comes out. If stability is an issue, have a shower seat available for your person to sit on as you help them get clean.
  • If your person is not interested in a shower, then look at other options to help them get clean. Something like dry shampoo can be used for hair. A warm, wet washcloth can be used in areas that need the most cleaning (arm pits, crotch, feet) while your person can remain mostly dressed.
Need more tips for showering? See these two videos with Teepa Snow:
  • Eating/Nourishment. Another thing we tend to take for granted is chewing and eating food. When we eat, especially denser things like meat and raw veggies, our mouths are actually doing several things at once.

    Our front teeth tend to take the initial bite, the food is then moved to the back and side of the mouth for our molars to grind it up. Our jaw needs to move not only up and down, but side to side. As the food is being ground, our mouth needs to find a spot to keep what is ready to be swallowed until we are ready to swallow it all. If your person skips any of those steps or does them out of order, they can be in danger of choking.

    Maybe they are refusing to eat because they aren’t capable of doing all of that at once. Maybe they aren’t eating because they can’t manipulate the utensil to get the food to their mouth. Maybe they don’t want to eat because the pleasure portion of the brain is telling them they want sugar. So here we are in another challenging situation. What can you do?

    Learning how to make the food that provides nutrition, is relatively easy to eat, and is pleasing to their palate might take some time, but it can be done. Things like yogurt smoothies, chili with beans and small pieces of meat, smaller types of pasta with a meat sauce, are all options that can provide a balanced meal and don’t require a lot of skill in the mouth.

    If the utensil use is an issue, Teepa Snow’s Hand-under-Hand® method has been proven to assist someone to eat while triggering muscle memory. You can view some videos on eating here.
4. Build a team
An image of stick figures visually connected to the word "support"This takes a lot of work and a lot of flexibility from you and your brain. Hearing us tell you, again, that you should build a team may make us sound like a broken record, but that’s how important this is.

To truly care for and support someone living in the later states of dementia can be challenging and exhausting. It is not uncommon for you to start seeing the dementia more than the person, which can be frustrating. It may be hard, but remembering that they are doing the best they can with what they have left can help, but you’ll still need some time for yourself. So if you can, try to build your  team before your person gets to the later states, to help ease the journey for you both.
An image of two people's hands, holding each other's handCaring for a person in late-stage dementia can be tough. As the person’s abilities change, you as the care partner have to change as well.

By being able to recognize that commonly expected ways of doing things may no longer work well, you open the door to new ideas that may better serve you both.

By slowing down, adding more visual cues, and allowing your person more time to process what you said, you reduce the chance for miscommunication.

By planning ahead, observing, and staying flexible, you’ll both benefit from a more proactive approach instead of a reactive one.

And last but not least, try to build your team early, to span the safety net to help catch and support you when things get tough.
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One Comment on “Late-Stage Dementia Care: 4 Tips for Overcoming Challenges”

  1. Great compilation of various skill sets and guidance. Is this available to general public? I would be happy to share on my page.

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