Activities & Engagement

Activities & Engagement

by

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

Date: 3/16/22

Recording length: 1 hour

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

Description:

  • TV, bingo, napping…what else is possible when so many skills are lost?
  • How can we help those we love living with dementia find purpose and meaning in in their day?
  • How do we find moments of joy for ourselves as care partners while supporting someone living with dementia?

In our daily lives we all have four types of activities that fill our days — purposeful, leisure, self-care, and rest/restorative activities. As human beings we need to find a balance of all four to be healthy and feel happiness. When that balance is off, all work and no self-care for example, it can negatively affect our physical and mental health. To feel joy and to feel needed are vital to mental health. Without them we cannot thrive.

People who are living with dementia are no different. They also need to feel a sense of purpose, engage in leisure, be involved in self-care, and rest and recharge their batteries. The brain changes that come with dementia make it increasingly difficult to initiate and participate in activities that they once enjoyed.

As care partners, both at home and in long-term care, the focus tends to be on self-care and restorative activities. We are very good at making sure all the personal care needs are met (meals, bathroom, medications, etc.) and that they get sleep. It can be a challenge to plan and fit in activities that provide leisure fun and a sense of purpose, especially for an already exhausted care partner.

With advance planning and assembling a support team of family and/or professionals, it is possible to help those we care for be engaged with life and find moments of joy. Increasing opportunities for meaningful engagement starts with getting to know the person so that you can tailor activities that are interesting, do-able, and valued by the person who is experiencing so many changes due to dementia. Designing daily routines, but staying flexible, is key as well. Meaningful engagement makes a positive difference for mental health and wellbeing of the person living with dementia and their care partners.

There are two Positive Approach to Care® (PAC) tools that can help in this planning immensely — the GEMS brain change model and the Six Pieces of the Puzzle. The GEMS can help with understanding what abilities are retained throughout the dementia journey. We can then adapt activities to match what skills a person still has for success and joy. 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. We can figure out what adjustments or changes can we make to the environment, stakeholders (those around them), and how their time during the day.

To learn more about meaningful engagement for people living with dementia, you can view our recorded webinar, “Activities in Dementia Care: Filling the Day with Meaningful Engagement.” 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.

by

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.