A
Layperson’s Guide: Weight Loss in End-stage Dementia
Evelyn Smith
M. S. in Library Science (1995), University of North Texas
Evelyn Smith
M. S. in Library Science (1995), University of North Texas
Summary: Most Alzheimer's patients need to be |
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.
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).
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.
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.
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). 2nd
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
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).
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).
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
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.
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