Dementia Challenges

Dementia Challenges

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Presenter: Dorothy Colby, Hale Kū‘ike Director of Community Engagement & Positive Approach to Care® Trainer

Date: 3/30/2022

Recording length: 1 hour, 15 minutes

Sponsors: Hale Kū‘ike and Catholic Charities Hawai‘i

Session:

  • Why do we keep arguing? Why can’t he find the bathroom? Why does she sleep all day? We find ourselves in challenging situations like these in dementia care every day.
  • How can we take a step back and become curious, non-judgmental dementia detectives to find out why these challenging situations keep happening?
  • We can learn how to be more effective and helpful in challenging situations by focusing our energy on the elements we CAN change vs. those we CANNOT

Uh-oh, that didn’t go the way I wanted it to! Uh-oh moments happen to us a lot when we are trying to support someone living with dementia. We are trying our best to give loving care, but still we find ourselves in endless arguments and stuck looking for solutions our challenges. If we can step back from these situations and look at them with curiosity and without judgement, we can learn from the experience. We want to turn these Uh-oh’s into Ah-ha’s

When we become dementia detectives, we learn about the brain changes that come with dementia so can start to understand the difference in how someone living with dementia perceives and interpret the world around them, including us, their care partners. We figure out how why loving offers of help might be interpreted as a threat to a changing brain. We work to see the environment through their eyes and understand why it might not be as easy to navigate as we think it is. The Positive Approach to Care®’s Six Pieces of the Puzzle tool can help us to look at all the factors that affect a person, and figuring out where we can make positive changes to help mitigate or prevent challenging situations.

Challenging Situation 001

Each of us as human beings is unique, with a unique personal history. We each have unique personal health and brain health statuses. These are the first three pieces of the puzzle that influence how we experience the world — The Person, Fitness/Health/Wellness, and Brain Change. Looking at these three pieces of the puzzle for yourself, which ones do you have influence to make positive changes? When we are young enough, the one we can make the most positive impact on the Fitness/Health/Wellness piece of the puzzle. Time is on our side.

Now thinking about those who are living with dementia, especially those who are elderly, how much influence do we have on these first three pieces of the puzzle? Who they have been does not change, though how that expresses itself may be different with brain change. We do not have as much influence over their Fitness/Health/Wellness piece as before. In general, because of advancing age and dementia, the person’s health goal has shifted curative measures to maintenance. We just want to try to have things not get worse, if we can help it. That third piece of the puzzle, Brain Change, is an important one to understand so that we can give better support. However, at this point in time, we cannot turn back the clock on dementia-related brain change.

The next three pieces of the puzzle are where we can focus our energy to make positive change — Stakeholders, Environment and Time. Everyone that touches a person living with dementia’s life is a stakeholder. You, other relatives, neighbors, the mail carrier, bus driver, healthcare professionals, they all influence how the person living with dementia experiences and responds to the world. The environment plays a big role in how successfully a person living with dementia moves through the world. Environments need to be friendly, familiar and forgiving of mistakes. The last piece of the puzzle is Time, how a person spends the hours of their day. Every person, whether they are living with dementia or not, needs meaningful engagement every day.

To learn more about challenging situations and how to move the needle on the Stakeholders, Environment and Time pieces of the puzzle, you can view our recorded webinar, “Challenging Situations in Dementia Care: Putting Together the Pieces of the Puzzle.” You can also download the workshop slide deck, GEMS printable poster, and PAC Resource Cards.

For more information about PAC, visit www.teepasnow.com.

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Presenter: Dorothy Colby, Hale Kū‘ike Director of Community Engagement & Positive Approach to Care® Trainer

Date: 11/12/20

Recording length: 1 hour

Sponsors: Hale Kū‘ike and Catholic Charities Hawai‘i

Description:

  • Won’t eat, won’t stop eating, won’t drink, only wants to eat sweets! These are some of the very common challenges for people living with dementia.
  • How can we take the struggle out of dining and bring back the joy?
  • What changes can we make to the food and overall dining experience to help better support people living with dementia throughout their journey?

Dining is a full sensory experience that we all get to enjoy multiple times a day. It is the source of some of our most powerful memories. Think back, what is one thing from your childhood that you really loved to eat? Picture who made it for you and think of when you got to have it. Maybe it was the crispy lumpia your mother made for you to have on your birthday. Maybe it was a mango from the tree at your grandfather’s house. If you close your eyes, you can almost smell and taste it. You can see the person who made it for you. Was that food sweet, salty, fatty, or crunchy? Those are elemental flavors that our brains love from when we are very young and stay with us as we age.

People who are living with dementia also retain the love of familiar foods, flavors and aromas. Foods that are lifetime personal favorites, that are familiar and look and smell good, are what are preferred. The brain changes that come with dementia can impact vision, fine motor hand skills, chewing, swallowing, hunger and thirst, and taste perception. When we can pair the understanding of a person’s dementia brain changes and their individual familiar favorites, we can make positive changes to better support nutrition and hydration.

Dehydration is a very common challenge for people living with dementia. Lack of thirst, or awareness of thirst, and fear of incontinence are a few of the possible contributing factors. Some people will simply not drink plain water, no matter how much you want them to. Flavoring water with a bit of juice or other flavorings can help. Foods that have high fluid content are great sources of water — soups, Jello, fruits, vegetables.

As dementia progresses a person may start to lose the find motor skill to use utensils. There are special adaptive utensils that require less skill. Food can be changed to finger food for independent eating. Challenges swallowing, dysphagia, is also very common. If you notice coughing when eating or drinking, a Speech Therapy swallow evaluation can help determine what food texture and liquid thickness modification might be better. But remember, just because food is chopped or pureed, doesn’t mean it still can’t be delicious and enjoyable!

As dementia progresses, a person gets a kind of tunnel vision. Their field of active vision becomes very narrow, almost as if they are wearing binoculars. When they are focused looking down at their plate, they are visually unaware of things and people around them. They are using what is called “task vision” to focus on the meal at hand. If they are looking up at a person, or perhaps the TV in the dining room, they are using their “social vision,” and are visually unaware of what is on the table right in front of them. With a slowing brain it becomes harder and harder to switch between social and task vision. Reducing visual and auditory distractions in the dining area to allow a person to completely focus on their food as they eat. Replacing the TV with quiet or perhaps soothing background music, can really help a person living with dementia focus on their food.

As a person nears the end of their lives, the body functions start to shut down. They will spend more time sleeping or with their eyes closed. They will not have an appetite for food or drink and may refuse to eat altogether. If they do eat, they may not be able to swallow effectively at all, instead aspirating any food or drink given into their lungs. Their bodies have limited ability to fight infections and they will be prone to pneumonia and UTIs.

At this precious time at the end of life, we want to have peaceful smells, sights and sounds. We can gently offer food, but if someone is not alert or refuses, that is a sign for us to stop, love the person and let them know we understand. At this point in life food is about little tastes, not nourishment or hydration. Maybe a little bit of pureed mango on my tongue, just like the one I enjoyed from grandpa’s tree as a child, can be a small moment of pleasure and joy. The most important thing at this time is our presence and relationship, not getting food in and getting the meal done.

To learn more about dining with dementia and more nutrition and hydration tips, you can view our recorded webinar, “Dining with Dementia: Techniques to Bring Joy to the Table.” You can also download the workshop slide deck, GEMS printable poster, PAC Resource Cards, and articles about dining with dementia by Teepa Snow and Dorothy Colby.

For more information about PAC, visit www.teepasnow.com.

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Presenter: Dorothy Colby, Hale Kū‘ike Director of Community Engagement & Positive Approach to Care® Trainer

Date: 10/15/20

Recording length: 1 hour, 15 minutes

Sponsors: Hale Kū‘ike and Catholic Charities Hawai‘i

Description:

  • Challenging behaviors, why are they happening?
  • When these challenges arise, what can make it better or worse?
  • It takes two to tango, or to tangle. How can we learn to dance with our partner for a better outcome for both of us?

If you were to ask someone to make a list of challenging dementia behaviors it would be long — repeated questions, paranoia, wandering, using “bad” words, resisting or refusing care, losing important things, and many more. If we look at the brain changes cause by dementia, we can start to understand the difference in how they perceive and interpret the world around them, including us, their care partners. We then can start to understand how our loving offers of help might be interpreted as a threat to a changing brain and these challenging situations occur.

These challenges are not just for the person living with dementia, they are challenges for everyone around them too. We are facing a challenging situation together. If we can take a step back and look at all the pieces of the puzzle that have led up to this challenge, we can learn and make changes to help make it better, or perhaps prevent it in the future. We can learn to be good, non-judgmental dementia detectives.

As detectives we need to examine our human physical needs — the need to eat and drink, to expend or recharge our energy, eliminate waste, be comfortable and free of pain. We need to look for signs of basic human emotional distress — anger, sadness, loneliness, fear and boredom. When any these needs are not met, whether we are living with dementia or not, we experience challenging situations and distress.

We can use the Positive Approach to Care® GEMS brain change model and the Six Pieces of the Puzzle to help us with our detective work. The GEMS can help with understanding what abilities change throughout the dementia journey and how we can adjust to them. The Six Pieces of the Puzzle can help with looking at all the factors that affect a person and figuring out where we can make positive changes to help mitigate or prevent challenging situations.

To learn more about challenging situations for people living with dementia, you can view our recorded webinar, “Challenging Behaviors: Recognizing Unmet Needs.” You can also download the workshop slide deck, GEMS printable poster, and the PAC Resource Cards.

For more information about PAC, visit www.teepasnow.com.