Swallowing & Eating Problems of Dementia Patients

An Annotated, Web-based Bibliography
 Summarizing Swallowing &
 Eating Problems of Alzheimer’s &
Frontotemporal Dementia Patients

Evelyn Smith

When Mother’s Mild Cognitive Disorder symptoms progressed into dementia, the neurologist suggested that she might suffer from Frontotemporal Dementia rather than Alzheimer’s.  However, he did not discuss possible symptoms that I as a care giver would possibly need to guard against to thwart deviant behavior. Nevertheless, when he asked about possible head injuries, Mother and I disclosed the now oft-repeated tale about a long ago-childhood accident.

 

Little Evelyn at age 7

The Christmas after Mother turned seven back in 1932, watching her three older brothers set off firecrackers, she decided that she too would join in the fun, placing a firecracker underneath a mayonnaise jar lid, whereupon it exploded, striking right above her left eye. After Mother was transported to a Dallas clinic 25 miles away on rural two-lane roads, she underwent surgery and then recovered from her head injury while simultaneously coming down with chicken pox.  My sainted grandmother was forced to wash Mother’s dishes in her quarantined hospital room; but otherwise, for years the only evidence of Mother’s misadventure was a scar directly below Mother’s left eyebrow.  Fast forward to the year 2000 when she exhibited the first signs of Mild Cognitive Disorder, which eventually developed into fully-developed Frontotemporal Dementia.

Perhaps the neurologist failed to ask the appropriate questions to classify her dementia as either Alzheimer’s or FTD, or perhaps he was overly careful about making a diagnosis, noting that the exact cause of Mother’s memory loses and aberrant behavior could only be known after an autopsy.  Nevertheless, after researching the differences between Alzheimer’s and FTD this past week, I experienced a definite eureka moment when I knew for certain that she suffered from FTD since this form of dementia is closely associated with over eating.  

Knowing the exact form of her dementia during the last eight years would have perhaps occasioned more research-based behavior management on my part as a care giver after she scarfed down an entire plate of chocolate-chip cookies that a Visiting Angel had baked, or perhaps I would have cut down the portions of food fed to her by overly pleased aides, so she would not have gaining all the weight she did after she was admitted to a nursing home five years ago. Even so, I eventually requested that she be put on a diet, explaining that if she was served potatoes, she certainly did not need bread as well.  

When Mother married in 1946, at 5 foot eight inches, she weighed 115 pounds. By her early 70s, Mother weighed 145 pounds, but after the onset of FTD symptoms, her weight quickly soared from 145 to 165 pounds—which was what she weighed upon her admission to a nursing home that catered only to dementia patients after being cared for at home for three years.  Once institutionalized, Mother became the star pupil, always cleaning her plate, while the Alzheimer’s patients around her refused to eat.  Her weight consequently when up from 165 to 178; at which point, a judicious nutritional plan gradually brought her weight down to 170--where it is now, five years after entering the nursing home.  Although she has had to have her meals pureed and her drinks thickened for over a year, she still eats everything she is hand fed.  End-stage symptoms, such as contractures, repeated skin tears, and urinary tract infections, point to a time when the family will have to decide whether she will have a feeding tube inserted or else be allowed to die without taking heroic measures.

Even so, discovering that FTD patients often over eat fit with her past obsessive compulsive behaviors,  and it has also allowed me at last to put an exact name to her condition.  Thus, this bibliography is dedicated to you, Mother, as well as to all Alzheimer’s and FTD patients whose families might benefit from having an extensive Web-based bibliography on eating and swallowing problems. This bibliography intersperses vetted, researched studies with sources from medical centers, Alzheimer’s and Frontotemporal Dementia charities, and personal blogs. Although  the research did not access any subscription-based journals, the reader can possibly find more recent research by accessing research university Web sites.  Even so, all sources used can readily be found on the Internet.

Table of Contents:

• General Information on Swallowing Problems

• Swallowing  & Eating Problems Confined to Dementia Patients

• Eating Problems that Affect All Alzheimer’s Patients

• Early to Mid-Seventh-Stage Eating Problems for Alzheimer’s Patients

• Eating Problems that Affect Only Frontotemporal Dementia Patients

• Eating and Swallowing Problems for Dementia Patients in Hospice Care

• Practicality and Ethnicity of End of Life Decisions

•  Addendum

• Conclusion

• Postscript: A Personal Note

General Information on 

Swallowing Problems

While Alzheimer’s and Frontotemporal Dementia can cause trouble swallowing, other conditions can trigger these difficulties as well.  Thus, caregivers should be alert to symptoms that signal swallowing problems.

Coping with swallowing difficulties. (n. d.). Health Library. Johns Hopkins Medicine.  Retrieved from http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/dermatology/skin_pigment_dis/digestive_disorders/coping_with_swallowing_difficulties_134,171/

Dehydration, not chewing long enough, or taking too big of bites can cause dysphagia, or else the gastroesophageal reflux disease (GERD) can cause bile or stomach acid to flow back up the esophagus or wind pipe, while certain medications as well as allergies and the common cold can cause swallowing problems.  Additionally, stroke, late-stage Alzheimer’s [and other dementias], thyroid diseases, tumors of the mouth or throat, problems with the vocal cords, and oral or throat surgery can cause swallowing  problems (Coping with swallowing difficulties, n. d., para. 3-4).  

Symptoms of swallowing problems include a lump in the throat, hoarseness, food or liquid stuck in the throat, pain or tightness in throat or chest, choking,coughing, and drooling (Coping with swallowing difficulties, n. d. para. 5).  Schedule a doctor’s appointment if difficulties continue for a period of time, cause choking, coughing, weight loss, trouble eating, or problems breathing (Coping with swallowing difficulties, n. d., para. 6). Solutions include taking smaller bites, chewing thoroughly, and eating slowly.  A therapist can also teach stroke victims to relearn to swallow as well as give caregivers tips on feeding patients with swallowing difficulties (Coping with swallowing difficulties, n. d., para. 6 & 8).

Swallowing & Eating Problems
Confined to Dementia Patients

Alzheimer’s patients and Frontotemporal Dementia patients start to have problems feeding themselves at about the same time they have difficulty remembering how to accomplish other Activities of Daily Living.  In the early stages of both dementias, the problems are very different, however:  Alzheimer’s patients need to be persuaded to eat while FTD-diagnosed individuals need to be kept from eating too much.  As memory and skills regress, a care giver needs to hand feed all types of dementia patients, and eventually, their food requires puréeing and the fluids thickened.  Swallowing problems, however, usually occur earlier in Alzheimer’s patients than in FTD patients.

Eating (problems with). What to look for? Physical changes.  (2013, April 5). Symptom Library.  Dementia Guide.  Retrieved from
http://www.dementiaguide.com/symptomlibrary/physicalchanges/eating/description/

Eating problems usually start when individuals diagnosed with Alzheimer’s have problems with accomplishing other Activities of Daily Living skills, for at this point, they have difficulty using utensils and do not pay much attention to table manners.  Eventually, they require a care giver to cut up food, can only manage eating with a spoon, and then regress to eating with their hands and finally have difficulty conveying food to the mouth (Dementia Guide, 2013, para. 2-3).

At the next stage, they need assistance finishing feeding themselves and may also require the care giver’s prompting to chew. They begin to have trouble swallowing because instead of moving food to the back of the mouth,  the swallowing reflex now pockets it to one side where it stays awhile (Dementia Guide, 2013, para. 4).   At this point, a therapist along with a nurse and dietician will turn to x-rays taken while the patient is swallowing to determine whether to puree food and thicken liquids because the brain no longer sends the appropriate signals to the muscles in the throat to move it along.  A care giver needs to feed patients during the end-stage of both dementias (Dementia Guide, 2013, para. 4). 

The simple refusal to eat, however, may not have anything to do with dementia because it might also indicate sore gums or dentures, or after a heart attack or stroke, the swallowing process may be temporarily impaired (Dementia Guide, 2013, para. 7). 

Frontotemporal Dementia patients, unlike Alzheimer’s patients, early on may over eat or excessively consume liquids or become fixated on sweet foods and gain a lot of weight in a short period of time.  In the later stages of FTD, patients may become orally fixated and so may attempt to put inedible objects in the mouth (Dementia Guide, 2013, para. 8).

Spencer, P. (2013, Feb. 17).  How to solve eating problems common to people with Alzheimer’s and other dementias. Caring.com. Retrieved from http://alzheimers.boomja.com/mobile/ITEM-How-to-Solve-Eating-Problems-Common-to-People-With-Alzheimers-and-Other-Dementias-171457.html

In a bulleted outline, Spencer details problems common to patients suffering from Alzheimer’s and other dementias--not  eating, eating too much, not drinking enough, messy eating, food jags, not swallowing, choking, and inability to feed oneself--along with suggesting causes for these problems and offering possible solutions (Spencer, 2013, para. 1-17).

Eating Problems that Affect 
All Alzheimer’s Patients

Although Alzheimer’s patients may need to be reminded to eat, their Frontotemporal Dementia counterparts need restrictions placed upon  their food intake. Because dementia patients have a child-sized attention span, meal times should be free of distractions.

Alzheimer’s behavioral management: Tips for managing common symptoms and problems. (n. d.). Helpguide.com. Retrieved from http://www.helpguide.org/elder/alzheimers_behavior_problems.htm

• Exercise feeds hunger, which feeds appetite, [so exercise should be an important part of any care program].

• Caregivers need to monitor fluid intake. 

• If patients do not like their caregivers, they may refuse to eat.

• Serve food on brightly colored dishes that contrast with the food color to pique the diner’s interest.

• Reduce distractions since patients need to concentrate upon eating and drinking.

(Alzheimer’s behavior management, n. d., para. 32)

Early to Mid-Seventh-Stage Eating 
Problems of Alzheimer's Patients

Early on the individuals diagnosed with  Alzheimer’s often require coaxing when it comes time to eat, so they may lose weight unless a care giver carefully monitors nutrition.  Gradually, they also lose the ability to use utensils and eventually the capability of feeding themselves.  Short attention spans mandate that meal times need to be calm and unhurried.  Moreover, swallowing becomes a problem by the time most Alzheimer’s patients transfer from home care to a nursing home.  At this point, a swallowing test ordinarily will determine if patients need to have their food puréed and fluids thickened.  To avoid aspiration, Alzheimer’s patients need to be fully sitting up when eating as well as remain in an upright position for thirty minutes afterwards. 

The five most preventable problems of late Alzheimer’s Disease.   (2012, Jan. 31).  Dementia Queen. Retrieved from http://thedementiaqueen.com/2012/01/the-5-most-preventable-problems-in-late-stage-alzheimers-disease/

The Dementia Queen blog lists the five most preventable problems of late-Alzheimer’s Disease  as falls, skin breakdown, contractures, and aspiration.   Falls can be prevented through strength and balance-training exercises and eventually intervention while skin breakdown can be deferred through frequent repositioning, nutrition, padded seats, and [hydrating] skin care (Dementia Queen, 2012,  para. 1-3 &  para. 4-7). Contractures [if discovered soon enough] can be “cured” through Passive Range of Motion exercises (Dementia Queen, 2012, para. 8011); aspiration, and the pneumonia it causes, can be prevented by proper positioning patients in a sitting position for safe swallowing as well as keeping them sitting upright for thirty minutes after a meal.  If patients cannot chew food properly, a speech therapist can best determine when to puree foods and thicken liquids (Dementia Queen, 2012, para. 12 & 13). Dehydration can be prevented by caregiver vigilance, the steady intake of fluids, and frequent monitoring of symptoms (Dementia Queen, 2012, para. 14-17).

Hampton, J. (2010, April 12).  Alzheimer swallowing strategies. Livestrong.com.

Retrieved from http://www.livestrong.com/article/105308-alzheimer-swallowing-strategies/
 

During the last stage of Alzheimer’s, patients begin to lose the swallowing reflex, so they may inhale food or liquid into the lungs, and this debris may develop into aspiration pneumonia.  Swallowing difficulties also cause weight loss and dehydration (Hampton, 2010, para. To protect against these problems, 1) allow at least an hour to feed patients or to supervise self-feeding; 2) keep patients seated upright for thirty minutes after eating, positioning the head forward rather than bent back; 3) as much as possible, allow patients to feed themselves, even if they need help to finish eating; 4) purée meals or serve soft food and thickened liquids as patients regress; 5) toward the end-of-life, they will be unable to eat or drink, but this will not cause further suffering (Hampton, 2010, para. 2-4). 

Hill, C. (2008, May 22).  Enhancing nutrition in late-stage Alzheimer’s Disease. About.com. Alzheimer’s/ Dementia.  Retrieved from http://alzheimers.about.com/od/caregiving/qt/latenutrition.htm

Late-stage Alzheimer’s patients [as well as patients would other types of dementias] have a greater risk of both malnutrition and pneumonia because of eating and swallowing problems since they are more likely to breathe liquid or food particles into their lungs (Hill, 2008, p 1).  However, Hill offers several thoughtful solutions that might prevent choking as well as picky eating.

Kennard, C. (2010, July 30).  Caregiver tips for coping with swallowing problems.  Health Central.  Retrieved from http://www.healthcentral.com/alzheimers/c/57548/116758/swallowing

Dysphagia, or difficulty swallowing solids and fluids, is a complex, multi-step muscular function that is common in Alzheimer’s and other degenerative neurological diseases. It occurs because brain damage does not allow the cerebral hemisphere to send a message to the muscles, or else when it does send a swallow command, the muscles might not receive the message in the correct sequence.  Additionally, the skeletal muscles involved in swallowing are also prone to weakness in older adults (Kennard, 2010, para. 1-4).  If care givers identify the symptoms of the early stages of dysphagia, however, they can exercise the cautions necessary to prevent patients from inhaling food and fluids (Kennard, 2010, para. 5).  These symptoms should prompt a swallowing assessment performed by a speech therapist; at which time, patients should not eat any more solid food or unthickened liquids until the therapist evaluates them (Kennard, 2010, para. 6).

Late-stage caregiving. (2013). Alzheimer’s and Dementia Caregiving Center. Alz.org. Retrieved from https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp

As dementia patients become less active, they requires less food; however, Alzheimer’s patients may forget to eat or lose their appetites, so adding sugar may encourage eating, and/or a physician [perhaps prompted by a family member] may suggest supplements to make up for this loss (Late-stage caregiving, 2013, para. 12). All patients in the latter stages of dementia need to be given plenty of time to eat and to remain seated in an upright position for 30 minutes following meals. Late-stage dementia patients also should be served softened or puréed foods and thickened liquids and should be encouraged to feed themselves as long as possible until they require hand feeding. Finally, dementia patients should have their weight monitored [for very different reasons depending on whether they suffer from Alzheimer’s or Frontotemporal Dementia].  Since thirst diminishes during the last stage of Alzheimer’s, patients need to be encouraged to drink.  They also need to be served foods with high-fluid content (Late-stage caregiving, 2013, para. 13). 

Milano, C. (2004, Aug.).   A new light on dining in patients with Alzheimer’s Disease. Carol Milano.  Retrieved from http://www.carolmilano.com/new//dining.html

Alzheimer’s patients require help overcoming mental and physical hurdles: loss of hunger, food recognition, individual biorhythms, and difficulty swallowing or chewing, and various co-morbidities—constipation, urinary tract infections, and dental problems, and external factors, such as a noisy dining room (Milano, 2004, para. 1-10).  Unfortunately, long-term care staff may have inadequate training and experience, high turnover rates, and budget constraints (Milano, 2004, para.11-15).  Alzheimer’s patients, however, have increased their intake of food after a dimly lit dining room was better lighted, or curtains or shade deflected glare from windows, and the tables were set with high contrast dishes and table coverings.  Milano also advises against the use of a single central chandelier since the parameter of the dining room will be darkened.  Additionally, she recommends grouping the diners by their level of dementia (para. 16-37).

Mom-n-Me. (2010, Nov. 30).  Problems with eating, drinking, and chewing in late-stage Alzheimer’s.  Wellsphere.  Retrieved from http://www.wellsphere.com/alzheimer-s-dementia-article/problems-wth-eating-drinking-and-chewing-in-late-stage-alzheimer’8217-s/1292431

Since Alzheimer’s takes away the sense of smell and feeling thirsty, Alzheimer’s patients need to be reminded to drink plenty of fluids. [In practice, this means care givers should keep records that indicate how much fluid patients have drunk daily]. During the last stage of Alzheimer’s, they may not remember how to chew and ultimately require tube feeding. [Again, in practice, care givers can delay this by puréeing food and thickening liquids.  Most physicians counsel that the use of feeding tubes usually does not lengthen life, nor does it improve the quality of it] (Mom-n-Me, 2010, para. 1-2).

Agitating dementia patients or rushing them through a meal may cause them to push food or liquid into the pharynx, or throat, making patients more susceptible to pneumonia.  Denture-wearing patients need to have their dentures checked regularly and if necessary realigned (Mom-n-Me, 2010, para. 3-4).

Riviere, S., Gillette-Guyonnet, S., & Voisin, T., et al. (2001). A nutritional education program could prevent weight loss and slow cognitive decline in Alzheimer’s Disease.  The Journal of Nutrition, Health & Aging, 5(4), 295-299.  http://www.mna-elderly.com/publications/163.pdf

Working from the correlation that weight loss usually accompanies morbidity in Alzheimer’s patients, and the greatest weight loss in Alzheimer’s patients usually occurs in the first stages of the disease, this European study undertaken by the Alzheimer’s Family Association followed a nutritional educational program aimed at caregivers during the course of a year (Riviere, 2001, p. 295).  At the end of the year, researchers compared individuals with early Alzheimer’s in the intervention group with those whose care givers did not receive any additional instruction while along the way both groups care giver's weighed the Alzheimer’s patients monthly.  

Meanwhile, intervention group care givers attended a maximum of nine one-hour nutritional classes throughout the year that addressed such nutritional topics as the consequence of weight loss in Alzheimer’s patients, nutritional and food  recommendations, and tips to increase protein and energy intake and replaced refused food (Riviere, 2001, p. 296).   

By the end of the year, however, no significant difference in weigh, autonomy, behavior, cognitive function, and disease stage existed between the intervention and the control groups. Patients whose care givers belonged to the intervention group suffered from more eating behavior disorders, and depression.  

 Nevertheless, the mean weight of the intervention group increased while the mean weight of the control group declined (Riviere, 2001, pp. 297-298). Partially disregarding some of these observations, researchers concluded that a nutritional course for care givers could have a positive effect on the weight, nutritional status, and mood of Alzheimer’s patients and additionally slow their cognitive decline.  However, they showed no actual proof of a slowing of mental function (Riviere, 2001, p. 299).

Smith, B. (2011, March 27).  Symptoms of late-stage dementia.  Livestrong.com. Retrieved from http://www.livestrong.com/article/83233-symptoms-late-stage-dementia/

The inability to communicate characterizes late-stage dementia while infections, Range –of-Motion limitations, skin breakdowns, incontinence, and swallowing disorders are symptoms of this stage of regression (Smith, 2011, para. 1).  Because  late-stage dementia patients lose the ability to speak as well as control over their motor skills, they relate to the immediate environment through their senses while spending most of the time with their eyes closed (Smith, 2011, para. 2).  Late-stage dementia patients must be fed while chewing and swallowing problems result in choking, aspirating, and developing life-threatening pneumonia (Smith, 2011, para. 3). This gradual regression back to infancy is known as retro-genesis, which means “back to birth” (Smith, 2011, para. 4).

Eating Problems that Affect Only
Frontotemporal Dementia Patients

Frontotemporal Dementia patients often gain weight because they over eat or develop a new-found fondness for sweet foods while not recognizing when they are full.  Swallowing problems occur in FTD patients after they do in Alzheimer’s patients.

Alleviating symptoms.  Eating problems.  (2012). Frontotemporal Dementia. University of California San Francisco.  Living with FTD: Practical Tips.  Retrieved from http://memory.ucsf.edu/ftd/livingwithftd/practicaltips/alleviating/multiple/eating

An individuals diagnosed with Frontotemporal Dementia may develop an over fondness for sweets, develop a food fetish, eating only certain foods, or prefer particular food combinations, eat off the plates of strangers, or cram the mouth with food (Alleviating symptoms, 2012, para. 1).  UCSF offers the following tips to avoid these problems: 

Determine the catalyst that sets off the inappropriate behavior;

• Substitute healthy options;

• Limit the amount of food the FTD-diagnosed individual eats;

• Keep on hand only healthy, low-calorie snacks;

• Serve smaller portions;

• Use nutritional drinks to make up for the patient’s poor diet choices;

• As chewing and swallowing difficulties increase, food preparation will need to switch to purred foods and thickened liquids;

• If dining with friends, warn them about the FTD-diagnosed individual’s changing dining habits if they are significant enough to notice.

(Alleviating symptoms, 2012, para. 2)

Frontotemporal Dementia. (n. d.). Facts and Tip Sheets.  Family Caregiver Alliance. Retrieved from http://www.caregiver.org/jsp/content_node.jsp?nodeid=573

Major symptoms of Frontotemporal Dementia include excessive eating, the craving or sweet foods and/or excessive alcohol consumption, or else individuals diagnosed with FTD may refuse to eat because of “negativism” or if they have lost the ability to use the motor skills that allow them to safely swallow.  These symptoms accompany either the progressive inability to understand written or spoken language or else they retain the ability to speak, but what they say does not fit the situation (Frontotemporal Dementia, para. 6). 

Frontotemporal Dementia. (2011, Oct. 19).  Mayo Clinic.  Retrieved from http://www.mayoclinic.com/health/frontotemporal-dementia/DS00874/UPDATEAPP=0

The Mayo Clinic lists over eating along with the following behavioral changes: 1) increasingly inappropriate actions, 2) indifference, 3) showing little judgment and inhibition, 4) apathy, 5) repetitious compulsive behavior, 6) inattention to personal hygiene, and 7) unawareness of changing behavior (Mayo Clinic, 2011, para. 5).  Accompanying movement disorders also encompass difficulty swallowing and muscle weakness (Mayo Clinic, 2011, para. 7).

Frontotemporal Lobar Degeneration (FTLD).  (n. d.). Caregiving topics. AlzOnline.net, pp. 1-20. Retrieved from http://alzonline.phhp.ufl.edu/en/reading/FTLDLobarDegTextFinalJune25.pdf

Depression in Frontotemporal Lobe Dementia may evidence itself by either poor appetite or lack of sleep, or by overeating and sleeping too much (FTLP, n. d., p. 3). FTLD patients may eat too much of a specific food, have an increased appetite, or a craving for sweets—all of which may lead to a large weight gain of up to 40 pounds within six months.  They may also suck or chew on inedible objects (FTLP, n. d., p. 4).  By way of contrast, individuals diagnosed with Pick’s Disease (semantic dementia) may early in the disease either over eat or else only eat certain foods as well as drink an excessive amount of certain liquids, like soft drinks or alcohol (FTLP, n. d., p. 5).

Thus, managed care for either type of Frontotemporal Dementia patients [in the early to mid-stages of the disease] should help them live a healthy lifestyle, complete with physical exercise, social activities, mental stimulation, and a nutritious diet that features fresh fruits and vegetables and avoids sweets, fats, and carbohydrates (FTLP, n. d., p. 8).

Frontal Temporal Lobe Dementia (FTLD).  (2013). AlzNC.  Retrieved from http://www.alznc.org/index.php/alzheimers-similar-diseases/21-frontal-temporal-lobe-dementias

In a very detailed explanation of Frontal Temporal Lobe Dementia, this North Carolina Alzheimer’s Association Web site delineates early issues that care givers encounter, including controlling access to drink, food, medications, and other items that FTLD-diagnosed individuals might use or abuse.  Solutions to swallowing problems might include changing medications from pills and capsules to liquids or granules that can be mixed-up with soft food, serving meat that does not require careful chewing, cutting sandwiches into smaller portions serving soup in mugs rather than bowls, and using covered [sippy] cups to prevent spills  (AlzNC, 2013, para. 20).

During the middle stage of FTLD, care givers should be prepared for the possibility that FTLD patients might put inedible things in the mouths.  Food sources [refrigerators and pantries] should be secured [much as parents would do with toddlers], and caregivers should provide numerous low-calorie snacks during the day to satisfy the FTLD-diagnosed individuals’ need for oral stimulation (AlzNC, 2013, para. 21). 

Gates, J. Hartnell, G. G., & Gramigna, G. D. (2006, Jan.).  Videofluoroscopy and swallowing studies for neurologic disease: A primer. RadioGraphics, 26, e22.  Retrieved from http://radiographics.rsna.org/content/26/1/e22.full

Proper swallowing removes secretions from the mouth, protects the [esophageal obturator] airway, permits sufficient hydration and nutrition, and ensures a satisfying meal (Gates, 2006, para. 1). Thus, a speech pathologist can improve the quality of life of patients who are having trouble swallowing while minimizing the risk of aspiration by using a videofluorscopy to determine whether a change in feeding procedures is necessary since this will help predict the possibility of aspiration and aspiration pneumonia (Gates, 2006, para. 2 & 3).

While a long list of diseases and conditions cause dysphagia, or trouble swallowing, aging itself as well as Alzheimer’s and other dementias influence the ability to swallow.  Aspiration pneumonia is common in late-stage Alzheimer’s [as well as other dementias] because of a reduced level of consciousness, decreased mobility, diminished nutrition, the loss of the gag reflex, possible periodontal disease, a depressed immune response, and finally the effect of inserting feeding tubes if the family request this heroic measure (Gates, 2006, para. 38).

Ikeda, M., Brown, J., Holland, A. J., Fukuhara, R. & Hodges, J. R. (2002).  Changes in appetite, food preference, and eating habits in Frontotemporal Dementia and Alzheimer’s disease.  Journal of Neurology, Neurosurgery & Psychiatry, 73, 371-376.  Retrieved from http://jnnp.bmj.com/content/73/4/371.full

Behavioral changes associated with Frontotemporal Dementia include changes in appetite and eating behaviors as opposed to Alzheimer’s, where a change in eating habits, with the exception of anorexia, is far less common (Ikeda, 2002, p.  371).  Accordingly, in this study, care givers of patients with FTD, and its variant, semantic dementia, as well as Alzheimer’s recorded the frequency, severity, and beginning dates of abnormal behavior whereupon researchers found a significance difference in the frequency of abnormal eating in the patients diagnosed with frontal temporal dementia and Alzheimer’s (Ikeda, 2002, p. 372). Eating inedible items was rare in all three dementias, although it was more common in semantic dementia, a condition where the individuals are still able to speak, but what they say does not make sense (Ikeda, 2002, p. 372).  

Semantic dementia patients originally changed their food preferences followed by an increase in appetite and a change in eating habits while other Frontotemporal Dementia patients altered eating habits or their appetite increased (Ikeda, 2002, p. 373). Significant weight gain occurred in 30 percent of all types of FTD but in less than ten percent of the Alzheimer’s patients (Ikeda, 2002, p. 375) while a preference for sweets was a prominent early symptom of FTD.  FTD patients also experienced a difference in serotonin levels (Ikeda, 2002, p. 375).

In Alzheimer’s, swallowing problems developed at a relatively early stage while significant weight gain occurred in 30 percent of the FTD cases and 36 percent of the semantic dementia cases, but only in 7 percent of the Alzheimer’s cases (Ikeda, 2002, p. 373). However, incapacitating swallowing problems were rare in all three groups until the later stages of the disease.  Swallowing problems developed in the third to fifth stage in both types of FTD while dysphagia begin to occur occasionally as a first or second symptom in Alzheimer’s (Ikeda, 2002, p. 374). 

Langmore, S. E. Olney, R. K., Lomen-Haerth, C. & Muller, B. L. (2007, Jan.).  Dysphagia in patients with Frontotemporal Lobar Dementia.  JAMA Neurology, 64(2), 58-62.  doi: 10.1001/archneur.64.1.48. Retrieved from http://archneur.jamanetwork.com/article.aspx?articleid=793148

This particular study conducted fiber optic endoscopic swallowing exams to formally evaluate swallowing in FTD diagnosed patients while comparing their results with those of a cognitively-unimpaired control group (Langmore, 2007, para. 1-5).  According to their care givers, all FTD patients had altered their eating habits: They were likely to eat everything in front of them without stopping and attempted to swallow large rounded masses of food, or boluses.  With the semantic dementia version of Frontotemporal Dementia, food rituals also developed.  All of which means that individuals classified with either variant of FTD gained weight in the past four months.  No one diagnosed with FTD reported problems swallowing; however, their care givers did (Langmore, 2007, para. 6).

Actually observing these patients swallowing the food during the FEES exam documented two unusual swallowing behaviors:

1. When chewing food before swallowing it, FTD subjects often let food leak into the pharynx for an excessive period of time. Consequently, the bolus, or moist rounded globs of food, they had swallowed fell lower in the throat before they swallowed it than is usual.
2. A residue of food was left in the throat in 1/3 of the FTD patients after they swallowed, which indicated  that the muscles groups that contract so as to propel the bolus through the lounge, pharynx, and larynx had less force.

The tests did not directly observe hyperplasia, or excessive overeating, but they did help explain why mild dysphagia, or trouble swallowing, along with compulsive eating, could cause aspiration (Langmore, 2007, para. 13). Research thus hypothesized that early problems with swallowing often predict shorter survival rates for individuals diagnosed with FT D unless effective intervention can manage the problem (Langmore, 2007, para. 17).

Liu, W., Miller, B. L., Kramer, J. H., et al. (2004, March 9). Behavioral disorders in the frontal and temporal variants of Frontotemporal Dementia.  Neurology, 62(5), 742-748. 

Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2367136/

This clinical study of 51 patients with Frontotemporal Dementia and 22  patients with Alzheimer’s and Mild-Cognitive Disorder further divided the FTD group into either the temporal variant of Frontotemporal Dementia (tvFTD), also known as semantic dementia,  or the frontal variant of Frontotemporal Dementia (fvFTD).  The frontal variant showed more anxiety, apathy, and eating disorders while the tvFTD group showed more problems with language and semantics (Liu, 2004, para. 1). Compared to Alzheimer’s patients, both fvFTD and tvFTD were more likely to show more euphoria, lack of restraint, and aberrant motor behavior.  Individuals diagnosed with tvFTD were more likely to display sleep disorders while those with fvFTD had a greater probability of  experiencing apathy, anxiety, and eating disorders (Liu, 2004, para. 14).

Murgatroyd, C. (2013).  Frontotemporal Dementia. Power of the Gene.  JOOMLA. Retrieved from http://powerofthegene.com/joomla/index.php/genetically-inherited-diseases/neurological-disorders/frontotemporal-dementia

A decline in social behavior, a dulling of emotions, changes in eating habits, a reduced attention span, speech and language problems, and a heighten creativity are all symptoms of Frontotemporal Dementia. Dutch artist Willem de Kooning  (1904-1997) [whose FTD-induced drinking problems were mistaken for alcoholism], during the latter-stages of his life developed a very sparse abstract expressionist style as a result of FTD while French composer Maurice Ravel (1875-1937) composed his most famous and controversial piece, the repetitive “Bolero”, under the influence of FTD  (Murgatroyd, 2013, para. 1-3).

Rahman, S. Sahakian, B. J., & Hodges, J. R. et al. (1999).  Specific cognitive deficits in mild frontal variant Frontotemporal Dementia. Brain.  Retrieved from http://brain.oxfordjournals.org/content/122/8/1469.full

Mild Frontal variant Frontotemporal Dementia (fvFTD) increases a desire for sweets that combines with the inability to sate the appetite, resulting in gluttony and weight gain.  However, hyper-sexuality, another symptom of the Klüver-Bucy syndrome, seldom occurs (Rahman, 1999, para. 4). 

Talan, J. (2007, Nov. 20).  Why people with Frontotemporal Dementia overeat: Brain areas implicated in new study.  Neurology Today, 7(22), 12-14.  Retrieved from http://journals.lww.com/neurotodayonline/Fulltext/2007/11200/Why_People_with_Frontotemporal_Dementia_Overeat_.7.aspx

University of California San Francisco investigators in a study that involved 32 patients with neurodegenerative disease and 18 healthy control subjects have found atrophy in the ventral insula, striatum, and anterior orbitofrontal cortex of frontotemporal dementia patients who over eat, even though they keep their recognition of taste and can feel full (Talan, 2007,  para.1, 4 & 6).   The same brain circuits involved with obsessive compulsive disorder and bulimia affect Frontotemporal Dementia patients who over eat (Talan, 2007, para. 7).  Thus, while FTD patients with this atrophied brain circuit feel satisfied to excess, the brain does not send the appropriate signals to keep them from eating, even if compensatory mechanisms, such as hyperactivity an altered metabolism, and the vigilance of care givers may keep them from gaining some weight (Talan, 2007, para. 9). Medical science has also identified the mutation of the Tau gene in families where Frontotemporal Dementia may be inherited (Talan, 2007, para. 12). 

During the course of this analysis, researchers furnished lunches for the FTD-diagnosed participants and a control group.   On the first day,  diners were asked to choose their favorite type of sandwich, and afterwards they could have as many sandwiches as they wished up to seven sandwiches.  The next day diners could eat as many of the seven sandwiches as they wished.  If a study participant ate a quarter of a sandwich, it was immediately replaced. Subsequently, 13 of the 32 FTD patients gorged themselves on sandwiches, the men eating 17.5 quarters [or over four full sandwiches], and the women eating 14 quarters [or 3 ½ sandwiches]. 

 A year later, participants in the study met again with similar results.  Researchers theorized that FTD patients had carbohydrate cravings that went along with a serotonin deficiency (Talan, 2007, para. 13-17).  As many as 40 percent of FTD patients over ate.  Thus, researchers inferred that the same lack of insight results in socially inappropriate behavior (Talan, 2007, para. 21).  

Eating and Swallowing Problems for 
Dementia Patients in Hospice Care

Arenella, C. (2013).  Alzheimer’s disease (and other brain diseases) and hospice care. American Hospice Foundation.  Retrieved from http://www.americanhospice.org/articles-mainmenu-8/about-hospice-mainmenu-7/17-alzheimers-disease-and-other-brain-diseases-and-hospice-care

End-stage dementia patients suffer from moderate or severe pain, extreme weakness, muscle spasms and contractures, choking and difficulty swallowing, incontinence as well as the inability to totally empty their bladder and bowels, weight loss, severe agitation, and skin breakdown (Arenella, 2013, para. 6).  Thus, hospice care needs to include pain and symptom control while not prolonging the dying process (Arenella, 2013, para. 7). ‘

Kim, K. Y. Yeaman, P. A., & Keene, R. L. (2005, Feb. 1).  Practical geriatrics end-of-life care for persons with Alzheimer’s Disease.  Psychiatric Services, 56 (2).  doi: 10.1176/appi.ps.56.2.139.  Retrieved from http://ps.psychiatryonline.org/article.aspx?articleID=89635

The rate of Alzheimer’s is not predictable even though the course of the disease is.  The median survival rate ranges from time of onset until death ranges from 3.3 to 9.3 years, but it can be shortened by diabetes, congestive heart failure, and ischemic heart disease (Kim, 2005, para. 1).  Patients with  end stage Alzheimer’s, which ordinarily lasts between two to three years, show the following symptoms: Incontinence, the gradual inability to walk, the steady onset of the inability to take care of any of their activities of daily living, followed by the failure to recognize significant others, bedsores [and skin tears], joint contractures, urinary tract infections, dehydration, eventual malnutrition, and pneumonia (Kim, 2005, para. 2). 

End-stage Alzheimer’s dysphagia results when patients refuse to eat or else the loss of brain cells impairs their swallowing mechanism.  At this point, they need to be hand fed, but choking can be prevented by avoiding thin liquids, keeping the swallowed bolus, or round blobs of food, moist and easier to swallow [by puréeing], and keeping the patient in a seating position (Kim, 2005, para. 13).  In time, however, family members must decide whether to insert a feeding tube when patients stop eating or have difficulty swallowing, even though it does not prevent aspiration or pneumonia and does not necessary prolong life (Kim, 2005, para. 14). 

The decision whether or not to insert a feeding tube is in large part cultural since 58 percent of all white American physicians view it as a heroic measure as opposed to only 28 percent of all African-American physicians (Kim, 2005, para. 17).   Most ethicists, however, view the discontinuation [or presumably not starting] tube-feeding as an ethical action (Kim, 2005, para. 18).

Lacey, D. (2006, Aug.). End-of-life decision making for nursing home residents with dementia: A survey of nursing home social service staff.  Health & Social Work, 31(3), 189-199.  Free Library. Retrieved from http://www.thefreelibrary.com/End-of-life+decision+making+for+nursing+home+residents+with+dementia%3a...-a0151547702

Most end-stage dementia patients have diminished interest in eating while they also have worsening swallowing problems (Lacey, 2006, p. 190).  The insertion of feeding tubes correlates with a greater frequency of aspirate pneumonia than taking no heroic measures does, and survival rates are similar for both groups of patients as reduced food intake signals the onset of the dying process (Lacey, 2006, p. 190).  The dying seldom experience hunger while infections can occur at the surgical site where a tube is attached, and dehydration may offer more comfort that artificial hydration does since it allows dementia patients to slip into a comma while artificial hydration prolongs dying (Lacey, 2006, p. 190).  A survey of social workers found that 75 percent of the respondents agreed that the dying rarely experience hunger pains while 60 percent understood that dehydration does not cause distress in the dying, but only 37 percent knew that tube feeding does not prevent aspiration pneumonia (Lacey, 2006, p. 195).

Mitchell, S. L., Kiely, D.K, & Hamel, M. B. (2004, Feb.).  Dying with advanced dementia in the nursing home. Archives of Internal Medicine.  Retrieved from http://archinte.jamanetwork.com/article.aspx?articleid=216616

The two common conditions most reported in both end-stage dementia and terminal cancer patients were chewing and swallowing problems and weight loss (Mitchell, 2004, p. 324). 

Mitchell, S. L., Teno, J. M., Kiely, D. M., & Shaffer, M. L. et al. (2009, Oct. 15).  The clinical course of advanced dementia.  New England Journal of Medicine, 361, 1529-1538.  doi: 10.1056/NEJMoa0902234  Retrieved from http://www.nejm.org/doi/full/10.1056/NEJMoa0902234

This metropolitan Boston-area study followed 323 n nursing home residents with advanced dementia for eighteen months, documenting their mortality rates for pneumonia (46.7 percent), febrile episode (44.5 percent), and eating problems (38.6 percent) (Mitchell, 2009, para. 17).  Symptoms common in the last three months of life include dysphagia, or shortness of breath (46.0 percent) and pain (39.1 percent) while 40.7 percent underwent at least one “burdensome” intervention--hospitalization, emergency room visit, parenteral therapy, or tube feeding (Mitchell, 2009, para. 19-20).  However, those residents whose guardians had an understanding of the course of advanced dementia were less likely to have to undergo these procedures (Mitchell, 2009, p. 1529). Eating problems included weight loss, swallowing, and chewing problems, the refusal or inability to eat or drink, dehydration, and reduced oral intake (Mitchell, 2009, para. 21).   

Volicer, L. (2005).  End-of-life care for people with dementia in residential care settings. Alzheimer’s Association. Retrieved from http://www.alz.org/national/documents/endoflifelitreview.pdf

Swallowing problems with resulting aspiration put advanced dementia patients at risk for aspiration pneumonia—all of which begins with choking during the intake of food and liquid.  This downward spiral usually starts when patients have problems swallowing thin liquids since this requires coordinating the muscles involved in swallowing.  Hence choking can be prevented by puréeing food and thickening liquids, temporarily postponing life-threatening aspiration episodes (Volicer, 2005, p. 12).

Nutritional issues common to dementia patients include weight loss, apraxia, or the loss of muscle control that makes handling utensils difficult, chewing difficulties, swallowing problems, and as the dementia progresses towards its terminal stage, the inability or unwillingness to open the mouth.  Alzheimer’s patients typically suffer weight loss before their Alzheimer’s diagnosis since they may forget to eat, no longer have the sense of smell, and are given to intense pacing.  By way of contrast, Frontotemporal Dementia patients suffer from hyperphagia, which means they over eat and by the later stages of this disease sometimes put inedible objects into their mouths (Volicer, 2005, p. 13).  

As dementia progresses for both Alzheimer’s and FTD patients, they gradually lose their ability to feed themselves—first because of  the muscular loss that makes them unable to use utensils, and eventually, because they have problems feeding themselves with finger food (Volicer, 2005, p. 13).  Care givers, however, can hand feed them until the beginning of the dying process at which time the patients do not feel hunger [if the witness of dying cancer patients is any indication].  This transition usually takes about two weeks to complete (Volicer, 2005, p. 14).  During this period, if a neo-gastric tube Is inserted, it usually does not make a difference in  survival time, nor does it prevent bedsores or the risk of infection while patients are restrained and give up some of the comfort that caregivers would otherwise provide (Volicer, 2005, p. 14).

Volicer, L., Hurley, A. C.  & Blasi, Z. V. (2001).  Scales for evaluation of end-of-life care in dementia. Alzheimer Disease and Associated Disorders, 15(4), 194-200. Retrieved from http://journals.lww.com/alzheimerjournal/Abstract/2001/10000/Scales_for_Evaluation_of_End_of_Life_Care_in.5.aspx

Dying symptoms include choking, gurgling, difficulty swallowing, and shortness of breath (Volicer, 2001, p. 198).

Practicality and Ethnicity 
of End of Life Decisions

Gillick, M. E. (2001).  Artificial nutrition and hydration in the patient with advanced dementia is withholding treatment compatible with traditional Judaism.  Journal of Medical Ethics, 27, 12-15.  Retrieved from http://jme.bmj.com/content/27/1/12.full

Gillick debates the dilemma involved when trying to decide whether to administer artificial nutrition to end-stage dementia patients who have difficulty eating and drinking and  thus loose interest in food.  While 29 percent of all dementia patients have a feeding tube inserted, ethicists and geriatricians alike argue that this is part of the dying process, so the appropriate—and ethical—response is to not postpone death.  Nevertheless, those who have medical power-of-attorney need to weigh the benefits against the liabilities of making this decision (Gillick, 2001, p. 12). While Jewish belief holds that since humans are made in God’s image, preserving human life is a sacred duty, Gallick asks if this obligation applies to the heroic measures sometimes administered to those suffering from end-stage dementia (2001, p. 13).  After exploring all options, he concludes that not inserting a feeding tube is the ethically-correct response if it can be established that the patient is already in the process of dying (Gallick, 2001, p. 14).

Gozalo, P., Teno, J. M., Mitchell, S. L., et al.  (2011, Sep. 29). End-of-life transitions among nursing home residents with cognitive issues.   New England Journal of Medicine.  365, pp. 1212-1221. doi: 10.1056/NEJMsa110347.  Retrieved from http://www.nejm.org/doi/full/10.1056/NEJMsa1100347

While comfort is the primary goal of hospice care, transitions from nursing home to a hospice are seldom consistent with this purpose. The study considers “burdensome transitions”:  1) Transfer from a nursing home to a separate hospice facility within the last three days of life; 2) hospital care within the last 90 days of life, or 3) numerous hospital admissions within the last three months of life (Gozalo, 2011, para. 3).  Whether to admit a patient to hospice should also consider co-existing medical conditions, such as diabetes, congestive heart failure, hip fractures, stroke, coronary artery disease, renal fail, cancer, and the type of dementia, as well as whether the patient has lost weight, swallowing problems, or pneumonia in the previous seven days, and if written advanced directives forbid or request heroic measures to extend life.

Kolata, G. (2004, May 18).  When Alzheimer’s steals the mind, how aggressively to treat the body.  New York Times.  Dysphagia Resource Center.  Retrieved from  
http://www.dysphagia.com/maillist/2004-May/msg00026.html
 

Kolata takes the reader through a typical end-of-life scenario:  An Alzheimer’s patient is choking on puréed food.  Does the daughter, who has power-of-attorney for her dad, have a feeding tube inserted, or are aggressive medical treatments, such as feeding tubes, intravenous fluid, antibiotics, and hospitalization,  inappropriate for end-stage Alzheimer’s  and dementia patients? (Kolata, 2004, para. 2 & 5).  While only seven percent of end-stage dementia patients receive hospice care, taking heroic measures to extend the lives of dying dementia patients does not necessarily improve their quality of life, even though the cost of providing intensive treatment is exceedingly high (Kolata, 2004, para 7-10).  Physicians, therefore, usually counsel that losing the ability to eat or drink signals the end-of-life, so families should focus on palliative care (Kolata, 2004, para. 42). 

Lipschitz, D. (2013).  End-stage dementia requires good decisions.  Lifelong Health.  Creators.com. Retrieved from http://www.creators.com/health/david-lipschitz-lifelong-health/end-stage-alzheimer-s-requires-good-decisions.html

Most physicians and nursing homes do not mention very much about end-of-life choices--even though research shows heroic measures are futile--other than perhaps to periodically urge that the family needs to indicate whether or not to file a written legal directive not to prolong the dying process with such interventions (Lipschitz, 2013, para. 1-3, 6).  For many dementia patients, end-of-life comes with the inability to eat that brings about weight loss and system failure (Lipschitz, 2013, para. 7), so understanding that not eating is normal can comfort family members as dementia patients enter the final stages of life.  Gradual weight loss and fatigue causes difficulty swallowing that results in an accumulation of mucus in the back of the throat, drowsiness, confusion, and dehydration whereupon the dementia patient slips into a comma, and without artificial intervention, death usually comes peaceably (Lipschitz, 2013, para. 9 & 10). Thus, when these advanced symptoms occur, loved ones must understand the inevitability of death (Lipschitz, 2013, para. 12).

Addendum 

Mielke, M. M. et al.  (2013 December 26).  Head trauma and in vivo measures of amyloid and neurodegeneration in a population-based study.  Neurology. 82(1), pp. 70-76.  [Abstract only].  doi: 10.1212/01.wnl.0000438229.56094.54 Retrieved from http://www.neurology.org/content/early/2013/12/26/01.wnl.0000438229.56094.54.short

In this Mayo Clinic Study of Aging inquiry, no differences existed between the 448 cognitively normal subjects with and without head trauma.  Of the 141 participants with Mild Cognitive Disorder (MCI), 18 percent had self-reported trauma.  MCI patients also had higher amyloid levels (by an average 0.36 standardized uptake value ratio units, p = 0.002). Thus, researchers concluded head trauma along with at least a momentary loss of conscious may be associated with Alzheimer-disease-related neuropathology.

Conclusion

Having access to this annotated bibliography of Web-based articles on swallowing and eating problems for patients with Alzheimer’s and Frontotemporal Dementia should take the reader through all the stages dementia, fully preparing caregivers for whatever symptoms might occur.  This should help caregivers provide better palliative care for their loved ones. 

Postscript: A Personal Note

So would I still recommend hospice, even though this allows for no heroic measures?  Yes, as soon as a physician recognizes that the patient shows signs of irreversible decline since it certainly extended the length and quality of Mother's life after she was placed on hospice care in early June 2013.  However, family members should be cautioned that watching a loved one struggle to breathe the last day of his or her life is a harrowing experience.  Of course, I knew this time was coming, but since Mother had done remarkably well under hospice care until her last week, her sudden down turn took everyone by surprise. 

On Friday, March 14, 2014, Mother started to refuse all nourishment; and by Tuesday, she refused any liquids, for she was afraid of aspirating.  Indeed, she had difficulty swallowing and almost aspirated when an aide attempted to give her water on Wednesday morning.  By this time, she was in a good deal of pain as her tortured facial expressions showed.  Accordingly, the hospice nurse administered morphine and oxygen starting at noon.

 

Since Mother was now having difficulty breathing, she took longer and longer between breaths until she gradually stopped.  Moreover, she could tell that she was dying, for she was fully awake and more than a little frightened until almost the very end.

The hospice nurse had advised that hearing is the last sense to go, so those who loved her responded accordingly.  Friends and pastors dropped by that afternoon.  But in the end, we were alone together whereupon I read all her favorite scriptures numerous times, talked about family photographs I was holding, and encouraged her (and myself) to be brave while stroking her hair, kissing and hugging her, and holding her hand as I sang innumerable hymns.  When I had just finished singing the first verse of "Fairest Lord Jesus", she breathed her last shortly after 10 p.m.

The medical links furnished on this Web page represent the opinions of their authors, so they complement—not substitute—for a physician’s advice.