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Feeding-Eating Considerations - Late Stage Alzheimer's

Feeding Eating

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There are two very excellent documents referenced below that discuss the important points to be considered when engaged in the feeding of Alzheimer's residents or patients. There is probably no more important function then that of feeding the Alzheimer's person. This is literally a life and death function that provides the nourishment and the food and the fluids that sustain the body. It is especially critical in the late stages of Alzheimer's where the victim is totally dependent on the caregiver to survive. While the early and middle stage Alzheimer's persons can present challenging behavior in their feeding, the most difficult situations are in the late stages. Success in feeding the Alzheimer's person in the late stages can provide the caregiver with the greatest of satisfaction while also providing the most depressing disappointment with failures.

The Ten Percent Weight Loss Rule of Thumb:  (Hospice/medicare rule) Underscoring the importance of maintenance of a healthy body weight and the importance of adequate food intake is the rule of thumb used by Medicare and Hospice to determine the end times. A recent unintended 10% loss of body Weight suggests that the person is nearing the end times. Poor feeding techniques may signal a message that is not accurate had proper feeding methods been utilized.

"Eating" (3 pages) by the British Alzheimer's Society, 2008. The document is their fact sheet 511. It can be downloaded from their website. (click on the below link) :

 www.alzheimers.org.uk

"Eating" (3 pages) by the Alzheimer's Association, November 2005. This document can be downloaded by visiting their publications page at their website. (Click on the below link) :

 www.alz.org

I would like to emphasize just a few points based on my own experience with my wife June.

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Adequate Time for Eating

Most nursing homes do not allot sufficient time for relaxed feeding/eating to properly do the job. One hour is the normal time set aside for this function. However, the food is never on the table awaiting the resident. Usually 15 minutes of the hour is lost in taking orders and getting the food in front of the residents. It is my opinion based on feeding June and observing many others over a period of over three years at an Alzheimer's facility, more than one hour is needed for this function. One and one half hours is more realistic in order to do a good job for all the residents and in particular the late stage resdents.

The Alzheimer's Association states: "Give the person plenty of time to eat. Keep in mind that it can take a person an hour or more to finish eating." They also recommend that "If the person doesn't want to eat, take a break, involve him or her in another activity, and return to eating later." "Don't criticize the person's eating habits or urge him or her to eat faster."

The Alzheimer's Society states: "Meals should be relaxed, unhurried occasions, so allow plenty of time..."

My experience with June indicated the need for more time is consistent with the progression of the  disease. As June slipped deeper and deeper into the shadows of Alzheimer's, her eating become slower and more difficult and more tiime was needed. In June's last 2 years of her 12 year journey, at least 1 hour and a half (1-1/2) was needed most of the time...in fact most of the time when I was finishing up feeding June her noon meal, the cleanup crew was already mopping the floors around our table as we were the last to leave.

The Eating Environment

Nursing home environments are normally not conducive to good eating and feeding. The presence of negative noise stimulation and distractions are very common. Loud negative vocalizations by other residents can be an upsetting distraction and unfortunately are very common. Loud talking across the room by staff members and sometimes family members is also common.

The Alzheimer's Association states: "Is the person agitated or distracted? If agitated, the person probably won't sit long enough to eat an entire meal. Think about how you can reduce distractions in the eating area. ...."Are there odors or harsh noises in the room that might distract the person from eating?" "Serve meals in quiet surroundings, away from the television and other distractions."

The Alzheimer's Society states: "make sure that there are no distractions such as television or radio."

Need for Patience

Although the virtue of patience may be the most important asset one has in feeding an Alzheimer's patient or resident, little is said about this important virtue. The Alzheimer's Association says only: "Be Patient." The Alzheimer's Society fact sheet does not mention the subject. Feeding the Alzheimer's person can be one of the most stressful duties of a caregiver. This is especially so in the late stages of the disease when feeding becomes more difficult and chewing and swallowing problems are common. Sometimes the Alzheimer's person will forget to open their mouth or may forget to chew and swallow their food. They may sit with food and fluid in their mouth. The entire feeding process is extended and lengthy. Only a few nursing home staff members have the patience to stay with the job until it is done. Some too often assume that further efforts are futile. Such nursing assistants will assume that the Alzheimer's person will not eat and discontinue their efforts. The caregiver who is patient and dedicated will continue such efforts. The feeding process can be very slow and tedious. If the same person or persons do the feeding most of the time, they will develop their own techniques for success.

Friendly Demeanor

Establish a relationship with the person or resident being fed...The late stages of Alzheimer's disease is a time in which Mayo Clinic says that most live in constant fear. They do not know the nursing assistant or friend and they are fearful of them, not knowing if they will harm them or hurt them in some way...every time they open their eyes, for some, it is to a new alien world and an alien people...A friendly smiling face and demeanor, with a soft touch will do much to set the stage for success. I remember the first time June had a male nursing assistant (Edward) to care for her. Both my daughter and I requested he go out of his way to present a friendly face...As it turned out when June was first introduced to Edward, June actually laughed out loud...The first time Edward fed June he held her hand. Meicy always presented a kindly smiling face. Pam was also a great example of a friendly person, always smiling with a kindly demeanor...I recall that Pam said June reminded her of her own mother and seemed to have special connection with June. A smiling friendly face and soft voice can go a long way towards establishing success in feeding late stage Alzheimer's victims. I remember the first facility that June was at, many times she was simply asked if she wanted to eat. Not a successful approach most of the time. One should simply assume they want to eat, present a friendly kindly demeanor and proceed from that point.

Pureed Foods

It is common in the later stages of Alzheimer's to require that the food be ground up or pureed in order to prevent choking for those who have difficulty in swallowing...June required her food be pureed for the last 2.5 years of her life. Below is a discussion of thickened liquids such as nectar and honey consistencies...a medical evaluation is normally a standard way to go...on the other hand liquid medications are often dangerous and can cause choking and fluid into the lungs...they should be replaced by solid medications that are ground up or crushed and can be mixed with the food and fed on a spoon...we had a very bad experience early on with liquid medications that caused June choking and coughing that went on for hours! Do not rely on the medical profession to do the right thing in the administration of medications...the caregiver needs to get involved to see that the right way is followed and avoid such bad experiences.

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Techniques for Feeding

There were four staff members at the Benedictine who became very accomplished at feeding June. Most all had varying techniques and methods to accomplish this goal.

Pam S

Pam S. used the tip of the food laden spoon to gently press down a few times on June's lower lip. This usually prompted June to open her lips and accept the food. Pam was a lady with a big heart who would come in to the Villa on her own time (weekends and holidays) and without pay, in order to make sure that someone was there who had the ability to feed June. Pam and June seemed to connect. Pam was actually a full time physical Therapist at the Benedictine Nursing home and would volunteer to assist the nursing assistants in the Alzheimer's Villa during meal times. Pam's photo is on the right...

Patricia T. used a partial rotation of the food spoon between June's lips on the right side of her mouth to prompt June to open her mouth and accept the food.

Meicy

Meicy Z. used a two spoon method. In this method the flat side of the handle end of a spoon is used to gently press down on June's lower lip. This served to separate June's lips. A food laden spoon was then partially inserted between June's lips. The flat handle end of the first spoon was then used to urge the food from this spoon and into June's mouth. Meicy's photo appears on the right...

Meicy also finds that using a small plastic medicine cup facilitates the providing of liquids.                   

Edward N. also used the two spoon method and the small medicine cup. Meicy was actually Edward's  teacher in using the two spoon method. I had wondered at the similar methods of Meicy and Edward until I learned that Meicy had tutored Edward on her technique.

All found that alternating between a drink and a bite of food was sometimes helpful. Once June opened her mouth to accept the food, she normally followed up with the chewing and swallowing.

Meicy's method appears to be an improved version of my original method. After sanitizing my hands prior to starting the feeding process (Most nursing homes have hand washing and hand sanitizing facilitiies in the dining areas.)... I would use my left index finger to push or urge the food from the spoon at June's lips...All four staff members developed their own techniques as there is a near total lack of any practical training for the staff by the nursing homes to perform this very important function...while this need seems like a "no brainer", that is unfortunately, the way it is!! 

There appeared to be a special spiritual connection between June and one or more or all of these very special staff people.

Note: Sometimes a firm frozen food like ice cream or sherbet will promote eating and swallowing. The cold food of this type sometimes restores alertness to the Alzheimer's person causing them to chew, swallow or simply to open their mouth. Hormel Health Labs produces a product called "Magic Cup" for Alzheimer's and dementia victims who have swallowing disorders. The 4 oz frozen cup comes in 4 flavors and has 290 calories with 9 grams of protein. It is also intended to serve as a weight loss intervention method. This product has been very helpful to promote chewing and or swallowing for June. All of the above mentioned staff use the "Magic" method as needed. The cold frozen Magic on the tip of a spoon will frequently serve as a cue to open the mouth to accept the food. The pleasant ice cream like taste is also helpful. "Magic also promotes chewing and swallowing when June on occasion accepts food in her mouth but does not then chew or swallow it.

(The Hormel "Magic Cup" is a standard food item stocked and available at the Alzheimer's "Villa" of the Benedictine for the resident meals.)

See note below on June's need for thickened liquids to avoid swallowing difficulties that cause choking and coughing. This condition is very common among late stage Alzheimer's and dementia type patients. The medical term for this condition is called dysphagia. Speech therapists are frequently used in the diagnosis. Liquid medications should be avoided where the patient has swallowing difficulty. The liquid medicine may get into the lungs and cause severe coughing that may go on for hours...Non liquid medications should be substituted if at all possible. This I found out the hard way early one evening when a nurse administered a liquid medication to June that got into her lungs...I was with June from early evening until 2 AM in the morning before her coughing subsided and she could get to sleep...it was a terrible night...I remember trying to console June, patting her back and administering oxygen in an effort to give her relief...

June's Eating History

(2005-2006 Notes:) During the first year of June's history at an Alzheimer's facility, (The Wellstead) she lost weight continually. When she first entered that facility she weighed 136 lbs. When she left that facility to transfer to her final Alzheimer's care facility, she had lost 19 pounds and weighed 117 lbs. I had concluded that the lack of competence and patience in feeding June by the staff at the Wellstead was the reason for her weight loss. The doctors however assumed that the weight loss was a result of June being in the final phase of her disease and predicted that June would not be alive in 6 months. An opinion that I considered to be ridiculous. All that was needed was competent, kindly and proper feeding. (The 10% Weight loss rule in action.) June was recommended for Hospice Care. Because of my disagreements with the Wellstead on June's care, we left that facility on March 24th 2006.  

The below right photo of June was taken at The Wellstead in November 2005 at her 78th birthday celebration. Near the end of her 7th year since diagnosis. June's face has a faded look.

June Berg Wellstead 2005It is apparent that Alzheimer's has taken a toll in June's outward appearance. June has a washed out and faded appearance from what was normal. Her smile is very faint compared to her normal smile that would cover her entire face. Her smile was her signature.

2006-2008 Notes: We are now at a point in time that over 2 years have passed. (2006-2008) June has regained most of her lost weight and presently weighs 132 lbs. This result is due to the dedication, competence and patience of a few very good nursing assistants and staff members at the present Nursing Home. (The Benedictine.) Four of the staff members in particular stood out above all the others in effort and results. (Staff members are described above.) To me they are Angels. Such patient and dedicated caregivers are a gift of God to June and I. June was removed from the Hospice program over a year earlier. 

June required a thickened liquid to avoid swallowing or choking and coughing difficulties that is very common with advanced stages of Alzheimer's. Thickened liquids come in two variations. A moderately thickened liquid is called "Nectar" thickened and an even heavier liquid called "Honey" consistency. I was happy that June could accommodate the moderately thickened "Nectar" liquids. Such liquids are commercially available for Alzheimer's and dementia type patients

For the last two years June has required total care to survive. She is totally dependent on a caregiver to provide her with her needed daily body nourishment. She is unable to use her arms or hands to eat. Her food is pureed and must be fed to her spoon full by spoon full. June sits most of the time with her eyes closed. queing June to open her mouth is difficult. June is now however in the very last stages off her Alzheimer's disease. (Entering her 11th year – the average is 8 years from diagnosis to termination.) I expect that we are very near the time when June will give up her battle and refuse to accept any further food and water.

(June and Stan at the Benedictine in October 2007. June rarely opened her eyes and feeding her was difficult- Photo by Jim Gehrz.)

June and Stan at Benedictine 2007(Final Notes:) The feeding of June has become more difficult in the past month or more. (Mid 2008) I find the hour to an hour and a half that I spend feeding June a meal is the most stressful time during the full days that I spend with her. My oldest son David feeds his mother June every Saturday morning for brunch. He tells me that his regular job is a high stress job but the time he spends feeding his mother is far more stressful. My youngest daughter Julie who feeds her mother June a snack and liquids every Thursday evening would also agree to the stressful affects of this most important function. I am sure that the feeling of responsibility for providing this life giving or sustaining function provides the source for such stress. I am also sure that any family member involved in the feeding function of a family Alzheimer's victim in late stages would relate to such feelings.

When June passed away on 23 October 2008 she had lived over 5 times as long as the Wellstead and their medical staff said she would live. Competent feeding care at the Benedictine made the difference. She restored  all of the weight she had lost while at the Wellstead

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Reader's Comments

Kathy Hudgins Arnett  - Greenwell Springs, Louisiana - (19 May 2014): "I  want you to know that your article about June and her eating patterns was so intriguing that I felt compelled to thank you for sharing this journey with others who are possibly facing a similar situation. Stan , I know that you are right about having time, patience regarding feeding a person with any stage and late stage of alz. I read that entire article and then decided to read your tribute to June. I know that it was the excellent care that you and others provided that extended her special life.  I feel like you could actually write a book! As a nurse and bring a caregiver to my own Mom, the entire nursing home industry truly needs to be transformed . Just know that June and the love that you two shared is an inspiration . What a wonderful and beautiful smile she had. Her face truly glowed with happiness!  My deepest sympathy goes out to your family and even though  June may be gone now, her life and how well you treated and cared for her during those trying times... It is truly a love story that brought tears to my eyes. My daughter used to live in Cary, NC and now She is in another state. She works at a large hospital In Seattle now.  I will tweet your story and share it with my online alzheimer's Support group.  My Mom is now 94 and she did not feel like eating today. Through Google I found the article about late stage feeding. Rest assured that Love lives on as we share our experiences with others.  I only wish that I had known June. She truly Has had an impact on so many. To caregivers who might be reading this, especially those of us dealing with an alzheimer's relative or friend ...learn the art of patience as exemplified by June's husband. Thank you again for your article about feeding and your experiences.  I know that many have been helped... Bless You all.   Cathy Hudgins Arnett "  

Vicki Cadogan  - Limerick, Ireland - (4 July 2014):"Thanks Stan. An interesting read especially now my mam has dysphasia. Always love reading your post." 

Dawn O'Connor Fuchs  - Lancaster, Pennsylvania - (4 July 2014): "God bless her! (Meicy) Keep up the great work that you give to these wonderful people with this horrible disease .. Thank you so much."  

Mary Monson  - Minneapolis, Minnesota - (4 July 2014): "Meicy is a lovely woman, and a comfort to both the memory loss residents and their families." 

Marilyn Singer  - Bothell, Washington - (4 July 2014): "God bless Meicy!" 

Bonnie Seip - Ottsville, Pennsylvania - (4 July 2014): "So very proud of you MEICY !! You are a Wonderful Person... I can tell just looking at your picture that you have a Heart of Gold and a Great concern for the BEST of CARE for the sick and elderly !! You are a God Send ! God Bless you.  A Big Thank you to Mr Stan Berg for sharing this website page of his beloved wife June ... This article is sure to help anyone in the health FIELD who is a Nurse , Aide or wanting to continue their education in this FIELD . I have been a Nurse for more than 30 yrs and to this day just by reading this information it really helps ones understand the final stages of Alzheimer's and eating / feeding technique . I know if some Nurses / aides that can become very frustrated with the caring / feeding and continued care for a resident who is battling this disease . This article I'm sure will help the ones who don't realize how much care is needed to give these poor People who are basically suffering from the loss of their dignity . It was taken away from them not their fault , please Nurses / aides remember use patience and give the best TLC you can...It could be your family member , Grandmom & sibling suffering from Alzheimer's and I'm sure you would not want them neglected in any way . Thank You for reading ... Thanks again Mr Berg for sharing .. God Bless you ..." (Stan's note: Bonnie spent her life as a caregiver in a nursing home.) 

V. Ray Kicker- Nashville, Tennessee - (5 July 2014): "Stan, You should write yours and Junes memoir in a book and include in it the hard road Alzheimer's dealt you both. Give part of the profit to your favorite Alzheimer's research center. I know I would purchase a copy." 

Bridie Breen  - Manchester, United Kingdom - (6 July 2014):"It's helpful Stan and I do direct others to look at yours and June's site."

Jennifer Dabney - Pomona, California - (6 July 2014):"I will share this article on assisting people with dementia with our staff developer in our health center. If staff could learn some of these techniques, perhaps the whole dining experience could be better." 

Suzanne Maria-Lily Larente Bsm  - Philadelphia, Pennsylvania - (7 July 2014): "So far me and mom are standing steady. My mom wakes, eats breakfast, then back to sleep. I then get her up and going mid afternoon. She eats well still on her own. Have to be careful not to give dinner foods for lunch as she then thinks dinner has past. Occationally her bedtime ice cream was dinner. My brother basically has left me with all her care. He does give her coffee and fruit in the a.m. Then I'm on my own. Mom will be going to the Dr. this month. I want a referral for home care. My brother is going to Talk to someone about a home. I told him she is not ready for that. Nor am I. My mother will be staying home!!! Until, I 100% can't do her care or of course it's better for her. But, if she is placed...I still will be there..day in and day out!!. My mom and I eat together. The other night,I went to my room. She was fine. But, she came a lookin for me...So we sat together after all...Have I Told You Lately Stan...Thank You...Thank You."  

Mary Ayers - Madison, Alabama - (14 January 2015):"Your post could not have come at a better time, Stan! 2 weeks ago the nursing home and Hospice said they had seen a dramatic decline in Mom's condition, she had lost 2 more lbs, wasn't taking supplements well and was basically eating 1 meal a day (breakfast). I knew Mom would eat pudding/applesauce for me when I'd visit at 8:30 (right after her breakfast) If she is eating 100% of that meal then why is she still willing to eat for me?? Also if I would visit after they got her up from her nap 3-3:30 she would readily eat. So my "experiment" began last week. I am now going EVERYDAY from 3-6 to feed her dinner. I feed her pudding, yogurt, pureed fruits/meats/vegs and Ensure Plus. It takes up to an hour and a half but she eats most of what I feed her. I will continue to do this until she shows me she no longer has the desire or ability to eat/drink. Some of the staff seemed to think I was not facing the inevitable but that is not the case!! I do not want to have ANY regrets as to what I could have done to meet Mom's needs. Thank you again, Stan I am going to go back to Junes site and read more articles."   

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June's Passing

June 1994

After an almost 12 year journey into the shadows of Alzheimer's, early one morning in late October 2008, an exhausted June felt God's gentle touch on her shoulder and heard the words: "Come Home June!" As June lay like a wounded soldier on a battlefield, it was God's Angels that ushered June into a Heavenly Kingdom to the sound of a chorus of Angels...and into June's new home, a "Mansion on the Hilltop", where there is no pain, nor illness nor tears...June's funeral notice as published in the Minneapolis Star in October 2008 can be seen on this website in the drop down menu under the "In Memoriam" label - just Click on:

 

"June K. (Rolstad) Berg - In Memoriam"