Feeding-Eating Considerations - Late Stage Alzheimer's
- Published on Thursday, 29 May 2008 17:21
- Written by Stanton O. Berg
There are two very excellent documents (See 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 dependant 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.
"Eating" (3 pages) by the British Alzheimer's Society, 2008. The document is their factsheet 511. It can be downloaded from their website. (click on the below link) :
"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) :
I would like to emphasize just a few points based on my own experience with my wife June.
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.
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 indicates the need for more time is consistent with the progression of the disease. As June has slipped deeper and deeper into the shadows of Alzheimer's, her eating has become slower and more difficult and more time is required. At the present time at least 1 hour and a half (1-1/2) is needed most of the time.
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.
There were four staff members at the Benedictine who were very accmplished at feeding June. They all had varying techniques:
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.
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 Z. used a two spoon method. The flat side of the handle end of a spoon is used to gently press down on June's lower lip in order to separate her lips. A food laden spoon is then partially inserted between June's lips. The flat handle end of the first spoon is then used to urge the food from this spoon and into June's mouth. 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 his teacher.
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. 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. There may even be a special spiritual connection between June and one or more or all of these 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.
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 opionion that I considered to be prepostrous. All that was needed was competent 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.)
It 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 stand 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 ago.
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 dependant 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. Cueing 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.)
(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
Note: After almost 11 exhausting years of battling Alzheimer's, June passed away on 23 October 2008.
June's obituary as printed in the Minneapolis Star Tribune following her death in October 2008 can be found on the top blue navigation strip under the label "In Memoriam" and on the drop down menu as item:
Updated: 20 January 2012.