Weight Loss in End-stage Dementia

A Layperson’s Guide: Weight Loss in End-stage Dementia

Evelyn Smith


M. S. in Library Science (1995), University of North Texas

Summary: Most Alzheimer's patients need to be
encouraged to eat while frontal temporal
lobe dementia patients are "plate cleaners".

Several weeks ago, a rapid weight loss of 7.8 pounds (4 kg.) within a single month necessitated placing Mother, who was already confined to a wheelchair, in hospice care when this weight loss was coupled with other aggravating factors, so the reader should note that this blog entry is very much in response to a personal need to learn about weight loss in dementia patients and how it fits into the dying process.   This type of weight loss, however, is very different from the weight loss that occurs during the onset of Alzheimer's and when some patients simply lose interest in eating. Thus, this cathartic summary of sources available Online intends to give other caregivers an overview of what is happening once hospice care has started as well as an understanding of how weight loss fits into the dying process. 

Family members should also be forewarned that the wasting brought about by end-stage dementia is not pleasant to watch, but they can give their loved ones some small measure of comfort if they confer regularly with the hospice and/or nursing home staff.   For example, immediately after Mother was admitted to hospice care, her physician changed her multi-vitamin supplement to provide her with more nutrients.  However, since she had progressively had trouble swallowing this supplement, perhaps because the calcium included in it is granular, the search was on for another vitamin supplement that fit her progressive inability to swallow.  Eventually, all vitamin supplements stopped because it was simply too hard for her to swallow them.

Family members should also be cautioned that the weight loss caused by trouble swallowing as well as the ongoing shut down of the digestive system is a progression that each individual patient experiences differently.   Even so, it is comforting to know what to expect.

Alzheimer's Society & Popular Sources

Dementia information for carers, families and friends of people with severe and end stage dementia. (2007). 2^nd ed. University of Western Sydney.  Palliative Care Dementia Interface: Enhancing Community Capacity Project.  Retrieved from http://catalogue.nla.gov.au/Record/4085461

In late-stage Alzheimer’s patients usually lose weight despite receiving adequate amounts of food and fluids because the progression of the disease causes complex physiological changes.  Patients also lose interest in eating and drinking, often refusing food and drink in the final weeks of the dying process (Dementia information, 2007, para. 21).

Eating in late-stage dementia. (2011, May 18).  Dementia-friendly environments: A guide for residential care.  Victorian Government Health Information.  Retrieved from http://www.health.vic.gov.au/dementia/strategies/assisted-eating.htm

Patients who lose interest in food and/or have trouble swallowing are more likely to lose weight, so caretakers should take the following steps to provide the highest quality of care:

• Provide soft and pureed foods as long as patients can tolerate swallowing them;

• Change food textures as needed;

• Check weight loss regularly and make up for it with fortified foods and vitamin supplements or foods higher in calories.

(Eating in late-stage dementia, 2011, para. 1)

During the most severe stages of dementia, patients will no longer be able to eat.  Even so, care givers should not force patients to eat even as they moisten the mouth and continue to provide oral health care (Eating in late-stage dementia, 2011, para. 2).

Fernandez, F. (2011, March 15).  Final stages of dementia.  Livestrong.com.  Retrieved from http://www.livestrong.com/article/103819-final-stages-dementia/1

Advanced-stage dementia patients have trouble swallowing and choking.  Weight loss occurs, and the skin around the lips becomes very thin.  Additionally, they start to display grasping and sucking reflexes (Fernandez, 2011, para. 3).

Gordon, M. (2011, January 31).  Alzheimer’s disease/ Timeline for final stages in early-onset dementia.  AllExperts. Retrieved from http://en.allexperts.com/q/Alzheimer-s-Disease-1005/2011/1/Timeline-final-stages-early.htm

Signs that the end is nigh include wasting and weight loss, loss of interest in food and drink, sleeping more and responding less, not being able to sit up in a chair, a rise in contracting opportunistic infections, and a corresponding break down of the immune system.

 

Late stage and end-of-life care: Caregiving in the final stages of life.  (n. d.). Helpguide.org. Retrieved from http://www.helpguide.org/elde/alzheimers_disease_dementia_caring_final_stage.htm

As patients lose their appetites and experience a decreased need for food and fluid, care givers should let them choose if they need to eat or drink while moistening the lips with glycerin swabs and lip balm as well as supplying [thickened] water, or juice if they are still physically capable of swallowing (Late stage Help Guide, n. d., p. 15).

Late-stage care: Providing care and comfort during the late stage of Alzheimer’s disease. (2011). Alzheimer's Association. Retrieved from http://www.alz.org/national/documents/brochure_latestage.pdf

The Alzheimer’s Association warns care givers that while weight loss is common in end- stage dementia, it can also signal inadequate nutrition,undiagnosed illness, or the side effects of medication (Late-stage care, 2011, p. 6).

Late stages of dementia.  (2013). Alzheimer’s Society.  Retrieved from 
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=101

Even though most dementia patients lose weight in end- stage dementia, care givers should ensure they are receiving enough food and liquid.   Because muscles in the throat and the patients’ reflexes are not working properly, this causes choking problems that often result in chest infections [aspiration pneumonia].  Thus, as the occasion demands it, physicians [or hospice nurses] may need to periodically refer patients to speech therapists or nutritionists (Late stages, 2013, Alzheimer’s UK, para. 12-14).

Lynne, V. (2013).  Symptoms of advanced-Alzheimer’s.  Hub Pages. Retrieved from

http://virginialynne.hubpages.com/hub/Symptoms-of-Advanced-Alzheimers

Severe weight loss occasioned by the inability to eat and process food is one of the symptoms of advanced dementia (Lynne, 2013, para. 5).   Dealing with these patients necessitates the following suggestions: 1) Make sure patients are seated upright when eating [Mother’s nursing home makes sure she is in an upright position for thirty minutes after meals]; 2) feed them pureed food more slowly than they have previously done so, and 3) and stroke the neck to elicit a swallowing response (Lynne, 2013, para. 6).   Hospice attendants ordinarily encourage end-stage dementia patients to eat and drink, but they also allow them to refuse food and water since as the digestive process starts to shut down, the body cannot take in nourishment, and eating makes them increasingly uncomfortable (Lynne, 2013, para. 16). 

Vaughan, K. (2013, April 30).  Signs & symptoms of end-stage dementia. e-How. Retrieved from http://www.ehow.com/list_5787280_signs-symptoms-end_stage-dementia.html

End-stage dementia results in weight loss caused by 1) feeding apraxia, or loss of the ability to chew and to swallow, 2) depression, 3) weakened motor skills, and 4) increased risk of aspiration (Vaughan, 2013, para. 4).

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

Volicer notes that forgetting to eat and a lessening of their ability to smell, intensive pacing, and poor-feeding practices causes weight loss in the beginning stages of Alzheimer's. Patients with frontotemporal dementia, by way of contrast, often suffer from hyperphagia, or excessive hunger (Volicer, 2005, p. 13).

As dementia progresses, however, all patients lose the ability to feed themselves without assistance whereupon care givers can hand feed them until the beginning of the dying process starts when the body begins to shut down. 

Observation of mentally-cognitive cancer patients indicates that the dying do not feel hunger and thirst.  Thus, when patients refuse all food and liquids, this will not result in pain or discomfort, and they will usually die a comparatively peaceful death within two weeks (Volicer, 2005, p. 13-14). 

Waller, E. (2001).  Lesson Thirteen—the death and dying process.  Gerontology 130: Working with the frail elderly.  Coastline Community College.  Retrieved from http://cvc3.coastline.edu/modelcvc3courses/elliswaller/lesson13.htm

Waller furnished a death-watch time line for elderly patients:  Older patients ordinarily decrease their food intake from between one to three months prior to death.  From one to two weeks before dying, their exhibit the following symptoms:  1) Refusal of food and drink, 2) decreased blood pressure, 3) increasing or decreasing pulse rate, 4) changes in skin color, 5) increased perspiration,  6) problems breathing, 7) [chest] congestion, 8) sleeping and not responding, and 9) fluctuations in body temperature.  10) Those who can communicate also complain that their body is tired and heavy.

Vetted & Research-based Sources

, P. N. (2010, October 27).  Palliative care in end stage dementia: Providing the right care for the right patient at the right time in the right place.  American College of Osteopathic Internists.  Retrieved from http://www.acoi.org/2010Convention/BrymanPalliativeCareAndAdvanced.pdf

Bryman identifies one of the symptoms of hospice eligibility as the inability to maintain sufficient fluid and caloric intake  so that a ten percent weight loss has occurred during the previous six months. Other symptoms include 1) serum albumin levels of less than 2.5 g. dL.  [Serum albumin is a globular protein commonly found in blood, the normal range of which is from 3 to 4 dl in adults]; 2) aspiration pneumonia, 3) pyelonephritis, or kidney infections, or other upper Urinary Tract Infections (UTI), 4) septicemia, or infections of the blood, 5) pressure ulcers, and 6) fever that recurs after antibiotic therapy (Bryman, 2010, slide 19).

Grundman, M., Corey-Bloom, J, Jernigan, T., Archibald, S. and Thal L. T.  (1996 June). Neurology, 46(6), 1585-91 (Medline Abstract).  Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/8649553

In a case study, Alzheimer’s exhibited significantly more brain atrophy in all regions of the brain other than the white regions than their controls did, although the Mesial temporal control region (MTC) remained the only brain region associated with dementia patients.  The study thus concluded that damage to the limbic system that controls swallowing correlates with weight loss in Alzheimer’s patients.

Hughes, J. C, Jolley, D., Jordan, A., and Simpson, E. L. (2007).  Palliative care in dementia: Issues and evidences. Advances in Psychiatric Treatment, 19 (4). doi: 10.1192/apt.bp.106.003442,  Retrieved from http://apt.rcpsych.org/content/13/4/251.full

United States Medicare funding for hospice care depends on the patient’s inability to survive less than six months, so complications caused by rapid weight loss have become just one of the indications that recommend dementia patients for hospice care.  Other Functional Assessment Staging or FAST variables include the following components:   

1) Hospice candidates suffering from dementia are ordinarily non-ambulatory; 2) they can no longer speak, and 3) they are entirely dependent upon others for all their activities of daily living. 4) Moreover, they may suffer from recurrent skin infections and pressure sores, 5) hip fractures, 6) [aspiration] pneumonia, and finally, 7) the need for artificial feeding—or the acceptance upon those who have medical power of attorney that life cannot be substantially prolonged or its quality improved by tubal feeding (Hughes, 2007, para. 16).

During the last stages of dementia, weight loss and the loss of muscle strength reflect reduced food intake, although the degree of weight loss in dementia patients may be greater than the refusal of food alone would indicate.  This is because a low metabolic rate and physical inactivity can bring about a state of physiological homeostasis, so that patients constantly lose weight and body mass, develop skin contractures, easily torn skin, and bed sores—all of which result from muscle atrophy and a poor diet that the trouble they have swallowing causes (Hughes, 2007, para. 16).

Additionally, advanced dementia and the lack of mobility that goes with it produce incontinence that threatens skin integrity and constipation that, in turn, leads either to impaction or overflow incontinence.  Constipation impedes bladder function and causes discomfort, pain, and toxicity whereupon patients may become confused or agitated, and may feel more comfortable being placed lying on their sides (Hughes, 2007, para. 17).

As this cycle continues, patients lose their appetites.   The loss of a need for regular meals causes coordination and sequencing problems involved with swallowing, so patients more easily choke on food and may develop aspiration pneumonia (Hughes, 2007, para. 26). 

Kovach, C. R. (2001).  Late-state dementia care. Marquette Elder Advisor, 2 (3).  Article 7, 48-56. Retrieved from http://scholarship.law.marquette.edu/cgi/viewcontent.cgi?article=1248&context=elders

Weight-loss in late-stage dementia is usually caused by swallowing problems as dementia patients lose the ability to coordinate the complex process involved in swallowing, and they are also less likely motivated to eat (Kovach, 2001, p. 50). As appetite decreases, the inability to swallow may lead to patients aspirate food, which in turn leads to fluid in the lungs (Kovach, 2001, p. 47).  

Pivi, G. A. K., Bertolucci, P. H. F. & Schultze, R.  (2012). Nutrition in severe dementia. Current Gerontology and Geriatrics Research.  doi: 10.1155/2012/983056 Retrieved from http://www.hindawi.com/journals/cggr/2012/983056/

Feeding problems and difficulty swallowing result in continuous weight loss as dementia progresses.  Most patients will eventually experience dysphagia, or the ability to coordinate all the steps in the swallowing process--a stage often associated with aspirate pneumonia (Pivi, 2012, para. 4-6).

Cachexia, or wasting away, and weight loss are common symptoms of end-stage dementia patients (Pivi, 2012, para. 13), and this weight loss correlates with higher rates of infection.  As this degenerative process increases, so do skin infections and ulcers, and body temperature eventually declines (Pivi, 2012, para. 13-15).  Pivi et al theorize that the continuing atrophy of the mesial temporal cortex corresponds with this drop in weight since the last stages of dementia also bring about a lowering of the Body Mass Index (BMI) in advanced dementia (Pivi, 2012, para. 18).

Sachs, G, A., Shega, J. W., & Cox-Hayley, D. (2004, October).  Barriers to excellent end-of-life care for patients with dementia.  Journal of General Internal Medicine, 19(1), 1057-1063.  doi:  10.1111/j.1525-1497.2004.30329.x.  Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1492583/

Sachs and his fellow researchers review the symptoms of end-stage dementia—a period preceded by the loss of all or most of the activities of daily living, any meaningful conversation, and a non-ambulatory status, weight loss of ten percent or more, recurrent infections, pressure sores, and possible hip fractures and/or [aspirant] pneumonia (Sachs, 2004, para. 18).  

Tsai, S. & Arnold, R. (n. d.).  #150 Prognostication in dementia.  End of Life/Palliative Education Resource Center.  Retrieved from http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_150.htm

Factors predicting a shortened-survival rate for patients with dementia include “male gender, old age, diabetes mellitus, CHF, COPD, cancer, cardiac dysrhythmias, peripheral edema, aspiration, bowel incontinence, recent weight loss, dehydration, fever, pressure sores, seizures, shortness of breath, dysphagia [or difficulty swallowing], low oral intake, not being awake most of the day, low Body Mass Index, and need for continuous oxygen” (Tsai, n. d., para. 2).  Six months after dementia patients are admitted to hospice care, over half have either succumbed to pneumonia compared with 13 percent of mentally cognitive hospice patients or have died from complications resulting from hip fractures compared with 12 percent of hospice patients not experiencing dementia (Tsai, n. d., para. 3).

____________

Postscript: A Personal Note

March 30, 2014

So how much weight does a patient lose during the end stage of dementia?  The answer obviously depends on the individual patient, but a wasting away isn't all that uncommon for all stages of Alzheimer's if medical intervention doesn't occur.  However, please let me cite my mother's case as an example:  Since inactivity and a craving for food experienced by frontotemporal dementia patients had originally caused Mother to gain approximately 40 pounds, or 64 kilograms, she differed from most Alzheimer's patients, who show no interest in food.  Mother originally stood five feet eight inches tall (173 cm.), and she weighed approximately 140 pounds (65 kg.)  at the time she started to lose her memory.  Since she had always been fashionably thin most of her adult life--she weighed 120 pounds (54 kg.) when she was wed in 1946.  Thus, she would have been pleased that a mortician was able to dress her in a size 14 Misses suit that was kept back for her funeral with only a little adjustment, for she had lost around 30 pounds (14 kg.) within the space of ten months, which is hard to do when confined to a reclining geriatric wheelchair. 

Fortunately, after Mother's initial weigh loss, after being placed in hospice care, her weight loss was gradual until the last week of her life when from Friday through Wednesday she refused all food, and from Tuesday onward she was unable even to swallow any liquid no matter how hard she tried.  Her food had been pureed for over three years and her water thickened as well.

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