Person-centered care for dementia

Dysphagia and Dementia

Dysphagia (dis-FAY-juh) is a medical term for a swallowing disorder. According to the National Institutes of Health, swallowing problems occur in about 45% of those have been diagnosed with Alzheimer’s and other dementias. It can occur in a person with moderate to advanced dementia.  The main risk and danger is that the person who suffers from this disorder may aspirate or inhale food or liquid into the airway and lungs, thus causing pneumonia. There is also the danger of dehydration or malnutrition with the lack of sufficient intake of liquids and food.  May 20 carrot soup-482354_640

Eating/Swallowing Process

Swallowing is a complex function involving over fifty pairs of muscles and numerous nerves. Swallowing problems are often the first indicator that dementia has entered the moderate stage of the disease. The American Speech-Language-Hearing-Association (ASHA) notes that dysphagia can occur at different stages in the eating/swallowing process:

  • Oral phase – sucking, chewing, and moving food or liquid into the throat.
  • Pharyngeal phase – starting the swallowing reflex, squeezing food down the throat, and closing off the airway to prevent food or liquid from entering the airway (aspiration) or to prevent choking.
  • Esophageal phase – relaxing and tightening the openings at the top and bottom of the feeding tube in the throat (esophagus) and squeezing food through the esophagus into the stomach.
NICHD Swallowing Chart

NICHD Swallowing Chart

Dysphagia Symptoms

Caregivers can help prevent serious complications by identifying the early stages at which swallowing problems begin. Each person with this swallowing disorder is different, but some signs and symptoms may include:

  • coughing during or right after eating or drinking
  • wet or gurgly sounding voice during or after eating or drinking
  • extra effort or time needed to chew or swallow
  • food or liquid leaking from the mouth or getting stuck in the mouth
  • chest congestion after eating
  • weight loss or dehydration from not being able to eat enough.

If any of these symptoms are present, to prevent pneumonia, consult with your loved one’s physician as soon as possible. They will likely give you a referral to a specialist such as a speech or language therapist to conduct a swallowing assessment.

Making Modifications

As the dementia progresses, you may need to make modifications to foods and liquids in order for your loved one to eat and drink safely. Here are some suggestions taken from the National Institute on Aging that might help:

  1. Alternate hot and cold foods to help trigger a swallow. Cold drinks are also easier to swallow than hot drinks.
  2. Cut the food into small pieces and make it soft enough to eat.
  3. Offer soft foods, such as ice cream, protein milk shakes, yogurt, soups, applesauce, gelatin, or custard.
  4. Thin liquids, like coffee, tea, water, or broth, are hardest to swallow. Buy Thick-It to add to liquids to make them thicker. You can purchase it at most pharmacies.
  5. Don’t use a straw; it may cause more swallowing problems. Instead, have the person drink small sips from a cup. (Check out the Teepa Snow video below.)
  6. Limit the amount of milk the person drinks if it tends to catch in the throat.
  7. Sweet taste receptors remain intact through the end stage of dementia. Persons at this stage usually favor sweets and can be enticed to eat by adding sweet thickeners to their foods.
  8. Don’t hurry your loved one. They may need extra time to chew and swallow each mouthful before taking another bite.
  9. Position your loved one in an upright, sitting position, with their neck forward and chin down when swallowing. Don’t feed them if they are drowsy or lying down.
  10. In the later stages, you may have to gently stroke their neck in a downward motion and say, “swallow” to remind them to swallow.
  11. If your loved one is on medication, find out if their pills can be crushed or taken in liquid form.

Mealtimes will not always be easy, but it helps to make these as pleasant and enjoyable as possible. There will be times when your loved one will not be hungry when you’re ready to serve food. Or they may not feel like eating much at that time but get hungry at other times. In the later stages of the disease, many people lose interest in food. Consult with the doctor if they are losing weight and ask what supplements, if any, to use.

I wish you peace, patience, and joy in your caregiving today and every day!

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For more detailed information regarding dysphagia, check the National Institutes of Health website: https://www.nidcd.nih.gov/health/dysphagia.

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The Alzheimer Association has recommendations regarding late-stage Alzheimer’s caregiving that you might find helpful. Just click: https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp.

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Dementia care advocate and trainer Teepa Snow provides tips regarding feeding and drinking in late stage dementia patients. This is a “must see” brief video: https://youtu.be/sNPAESrllgQ.

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Morningside Ministries has a series of dementia training videos. This one is a helpful five-minute video on “Food Cuing for Appetite and Pleasure:” https://youtu.be/cqyxvHONG18.

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Laura Michael, a dysphagia specialist, has a BS degree in nutrition and owns Dysphagia Supplies Direct, an on-line store. Her website contains four instructional videos regarding the proper use of thickeners: http://www.dysphagiasupplies.com/videos.

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Check out these recipes from the NYU Steinhardt Iron Chef Dysphagia Challenge: https://speech.steinhardt.nyu.edu/dysphagia-cookbook/#recipes.

This article is about the benefits of xanthan gum thickeners vs. modified cornstarch thickeners. You can read it here: http://thickit.com/xanthan-gum-what-is-it-and-why-does-it-matter-for-those-with-dysphagia/.

Exercising Muscle Memory – Part 2

In Part 1, I introduced a person-centered approach to caring for a loved one with dementia. This approach is based on the philosophy of Dr. Maria Montessori: to treat the individual with respect, dignity, and helping them remain as independent as possible, for as long as possible. Feb 18 thumbnail_Braincartoonv2

It is a framework, designed to work with “muscle memory,” the type of procedural memory – the “how” of memory.

In this model, the activities of daily living, such as dressing, eating, personal hygiene, etc., are broken down into easy sequential steps. You provide the encouragement for your loved one to do these activities as much as they can. This process taps into their “muscle memory” so that they don’t lose their ability to do these simple tasks through lack of doing them.

Persons with dementia lose their ability to plan, initiate, and carry out daily activities as the disease progresses. In the early stages of illness, there may not be noticeable changes. For example, in dressing themselves, they may put on clothes that have spots and stains without realizing this. They can, however, still find their clothes and put them on in the order needed. In the middle stages, you may find that they wear the same clothes day after day, or mix colors and patterns that don’t match. They begin to have trouble buttoning buttons, or zipping zippers. In the late stages, they may put outer garments on first and undergarments on top, forgetting the proper order.

To explain how this person-centered Montessori approach works, here are a few examples using key principles mentioned in Part 1. Some organization, preparation, and patience is needed on your part as caregiver.

  1. CHOICE

Your loved one has been making choices all his/her life and needs to feel they have some control of their life. Depending on the stage of the dementia, if they can still make a selection of what clothes to wear, ask them to choose between two items. For example, would they like to wear the blue shirt or the white shirt? The black pants or the grey ones? Help make it easy for them to make a decision. You might also inform them that today is the day you go to church, or to a doctor’s appointment, or out to eat lunch. In these cases, they may want to dress up a little more than in everyday clothes.

  1. INDEPENDENCE

As caregiver, you provide the necessary encouragement your loved one requires to dress themselves. You might just need to lay out the pieces of clothing in the order they should be worn. If your loved one is in the middle stages, handing them one piece of clothing at a time may be all that is required. Prompt or cue them how to put their clothes on, button buttons, zip zippers, tie shoelaces. It may take a little extra time, but the important thing is that they do it themselves. Your patience is required here so that you aren’t tempted to take over to hurry up the process.

  1. DEMONSTRATE

As the dementia progresses, your loved one’s ability to process words will deteriorate. Showing how to do things in small steps is better than giving instructions. By using less language in your interaction, you help allow them to focus all their attention on what you are demonstrating, rather than trying to find the “right” words to respond to your questions. This also lessens their frustration as they try to imitate your actions.

On the few occasions when I helped my Mom get ready to retire at night, I stood beside her in the bathroom. Next, I gave her a warm, wet washcloth in one hand and the bar of soap in the other. Then, just rubbing my hands together, I pretended I was rubbing soap onto the washcloth. Mom responded by doing the same, washing then rinsing her face and hands. Feb 18 face cream-1327847_640After handing her the towel to dry, I brought out her favorite facial cream, “Oil of Olay.” Mom had used this toiletry product for years. Rubbing my cheek, as if to put on the cream, was a signal for Mom to do the same. It didn’t take many words – just demonstrating so that her “muscle memory” could kick in and take over.

  1. SEQUENCE

If you stop to think about it, a task as simple as brushing one’s teeth involves many steps to completion. Breaking down everyday tasks into their basic, simplest components allows your loved one to focus on one step at a time.  You want them to be successful in this task, so you may need to adjust the steps to match where they are in the disease process. Putting the toothbrush next to the tube of toothpaste on the counter may be all that is needed. In the middle stages, you may have to cue them to take off the cap, squeeze the toothpaste on the brush, wet the brush, brush up and down, rinse their mouth, etc.  In the later phase, you may even need to guide their hand as they brush their teeth, and hand them a glass of water or mouthwash to rinse. Watch so they don’t swallow the mouthwash thinking it’s something to drink.

  1. MEANINGFUL ACTIVITIES

This principle describes the introduction of activities and routines that are meaningful to our loved ones. These activities help activate their senses and stimulate their minds. To ensure success, take into account your loved one’s interests, hobbies, former occupation, likes and dislikes. The important thing is to try to plan activities where there is no right or wrong way or winners or losers. Here are a few examples:

  1. Heather O’Neil, from Yorkshire, UK, has a website, “Creative-Carer.com,” where she posts some of the therapeutic activities that she plans for her mother who was diagnosed with mixed dementia. Her mother Margaret was an artist. Each week, Heather organizes materials for an artistic activity such as card making, crepe paper flowers, etc. Her mother has won competition awards for her pieces and gives out many of her creations as gifts.
  2. Harry Urban has been living with Alzheimer’s for over thirteen years and doesn’t let his dementia get to him. His hobby is woodworking and he displays many of his creations on his Facebook page. He delights in challenging himself to carve difficult pieces.
  3. For a former fisherman, try giving him a tackle box with lures and flies to organize or the materials to make them.
  4. For a baseball fan, looking at or collecting Hall of Famer baseball cards might be enjoyable, or even just playing a game of catch.
  5. A golfer might like to practice putting golf balls on an indoor/outdoor putting mat.

Many dementia care facilities in the USA are incorporating Montessori principles. The benefits to following this person-centered approach are many but here are just a few:

  • An increase in self-esteem
  • An increase in motor skills
  • An increase in interaction
  • Stimulation of the senses
  • A sense of accomplishment
  • A reduction in anxiety.

One last recommendation – be flexible and willing to adapt to what your loved one is able to do on a certain day. What was of interest one day may not be engaging to them the next.

I wish you peace, patience, and joy in your caregiving today and every day!

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To visit the website and see photos of Heather O’Neil and her mother, go to: Creative-carer.com. Her Facebook page is www.facebook.com/CreativeCarer/.

Harry Urban’s Facebook page is www.facebook.com/Harry.Urban1/.

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To read about how Montessori methods are used with students and senior residents with mild dementia, click here: http://www.therobertsacademy.org/school/approach.html.

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Brookstone sells an indoor putting green mat for under $40.00. Check it out here: http://www.brookstone.com/pd/putting-mat-with-hazards/797547p.html.

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This 4-minute video, “Thelma’s Story,” shows the Montessori practice in use: https://youtu.be/lUfhr67oTA8

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Exercising Muscle Memory – Part 1

Practice — practice — practice! This was a kind of motto of mine as a young girl rehearsing for an upcoming piano recital. Little did I understand at the time that my music lessons and practice sessions were an effective way of developing “muscle memory.” Feb. 4 Braincartoon (2)

Wikipedia defines muscle memory as “… a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for the task, eventually allowing it to be performed without conscious effort.” Muscle memory works when you drive a car, ride a bike, eat, tie your shoelaces, type on a keyboard, play a musical instrument, etc.

I recently came across two websites that discuss ways to encourage persons with dementia to exercise their muscle memories and focus on what they still can do. Both sites describe a person-centered Montessori approach. Based upon successful methods that were used by Dr. Maria Montessori, this approach attempts to keep a person as independent for as long as possible by focusing on tasks and habits related to procedural memory.

Maria_Montessori in 1913To digress for a moment, Dr. Maria Montessori (1870-1952) became the first female doctor in Italy in the 19th century. She was a physician, educator, and innovator. She worked with children with intellectual disabilities and developed a method to teach them to read and write. By 1910, her philosophy and method of teaching and nurturing youngsters was applied to students in mainstream schools. The emphasis is placed on self-determination and self-realization. As Dr. Montessori puts it herself, “Never help a child with a task at which he feels he can succeed.” Her teaching methods are still in use today in Montessori schools all over the world.

How does all this apply to care of our loved ones?  Persons with Alzheimer’s and dementia are often confronted with what they can no longer do, such as routine activities of daily living. They may struggle with simple tasks like dressing themselves or brushing their teeth. The key principles of the Montessori method can give you, the caregiver, an understanding of how better to focus on your loved one’s capabilities, engaging them in meaningful interactions and helping them remain as independent for as long as possible.

Alzheimer’s Australia, an advocacy agency, in conjunction with Monash University in Melbourne, Victoria, has developed a wonderful resource, “Relate, Motivate, Appreciate,” that details this person-centered approach. (See link below.) Here is a summary of the twelve key Montessori principles of engagement, as listed in this resource:

  1.  The activity should have a sense of purpose and capture the person’s interest.
  2.  Always invite them to participate.
  3.  Offer a choice whenever possible.
  4.  Talk less. Demonstrate more.
  5.  Physical skills; focus on what they can do.
  6.  Match your speed with the person you are caring for. In other words, slow down!
  7.  Use visual hints, cues, or templates.
  8.  Give them something to hold.
  9.  Go from simple tasks to more complex ones.
  10.  Break the task down into steps. Make it easier to follow.
  11.  To end, ask, “Did you enjoy doing this?” and “Would you like to do this again?”
  12.  There is no right or wrong. Think engagement.

I wish I had been aware of this approach when I was caring for my mother. At times I felt it was hit and miss when trying to engage her and keep her active. Be flexible and willing to adapt to what your loved one is able to do on a daily basis, as each day may be different. I hope you will share your experiences of your attempts to help your loved one regain control of aspects of their life and retain their abilities for as long as possible.

In Part 2 of this topic (an upcoming blog), I will delve further into four of the principles listed above, and detail specific things you can do in helping your loved one exercise their memory muscle.

Oh, and by the way, I never became a world class pianist, but I still play the piano for my own enjoyment and relaxation, albeit this memory muscle is a little “stiff!”

I wish you peace, patience, and joy in your caregiving today and every day!    

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Here is the link to a 72-page booklet developed by Alzheimer’s Australia, in conjunction with Monash University: http://qualitydementiacare.org.au/wp-content/uploads/AlzheimersAustralia_Montessori_Resource_WEB.pdf.

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Another website that details the Montessori methods for dementia care is: http://keepingbusy.com/learning-center/montessori-principles-for-dementia/.

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The Dementia Action Alliance has a sixteen-minute video, “Person-Centered Matters, Making Life Better for Someone Living with Dementia.” This video highlights the positive aspects about helping people live fully with dementia, told through the stories of five people living with the condition at various stages. You can watch it by going to: https://www.youtube.com/watch?v=5R3idi0e1eg.

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