Because of their unique experience with what happens at the end of life, hospice and palliative care experts might be able to help identify when someone in the final stage of Alzheimer’s disease is in the last days or weeks of life. Support for Dementia Caregivers at the End of Life.
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According to experts on late-stage Alzheimer's disease at the Mayo Clinic, caregivers may experience difficult emotions as they see their loved one become less and less able to function. In addition, the physical challenges of having to lift the patient can become overwhelming or impossible especially when added to the lack of sleep caused by being on call 24/7. Feelings of guilt and the sometimes inevitable need to transition the patient to a nursing home make coping with the disease even harder on the family. Talk with your family doctor or a hospital social worker to find out the options in your community for respite care and residential care if you are a caregiver of a patient with late-stage Alzheimer's disease and need help.
Published online 2012 Nov 9. doi: 10.2185/jrm.7.59
PMID: 25649740
Abstract
Objective: The aim of the present study was to clarify the signs andsymptoms of impending death in end-of-life senile dementia from the point of view offormal caregivers in rural areas.
Patient/Materials and Methods: We used qualitative data based onretrospective analyses. The data was gathered following a workshop on end-of-life care ofthe elderly with dementia attended by formal caregivers that was held in Iga City, MiePrefecture, Japan, in September 2011. There was a total of 29 workshop participants. Theworkshop products were created in the first session of the workshop entitled “Signs ofdeath.” During the session, we used the brainstorming method, and participants took turnsstating at least two signs, symptoms or premonitions of death. In the end, there were 93cards in total displaying signs of impending death observed in the end stage of dementia.These 93 entries were then classified into clear categories.
Results: The categories defined were breathing disorder, consciousnessdecline, vital power decline, reduced oral intake, feces disorder, calm and peacefulcharacter, blood pressure decline, change in skin color, patient odor, edema, preagonalvital power, body temperature decline, bedsore/wound deterioration, body weight reduction,cyanosis, and oliguria. The most frequently cited symptoms fell in the breathing disordercategory (12 cards), followed by consciousness decline (9 cards), vital power decline (9cards), reduced oral intake (6 cards), and feces disorder (6 cards). Also frequentlymentioned were symptoms falling in the calm and peaceful character, patient odor andpreagonal vital power categories.
Conclusion: The results show that formal caregivers in rural areasidentified breathing disorder as a top indicator of impending death in end-of-life seniledementia cases. The results also highlight some other characteristic signs of impendingdeath, such as preagonal vital power and calm and peaceful character. This research couldhelp develop formal caregivers’ observational skills in the end-of-life care settings.
Keywords: dementia, symptom, end-of-life, qualitative study, formal caregiver
Introduction
It is generally believed that, in Japan, elderly people would rather pass away at along-term care facility or in the home where they have spent most of their life, although inrecent years, a growing number of Japanese people spend their last days of life inhospitals1, ). However, hospitals no longer havethe spare bed capacity to cope with the increasing demands of an aging population1). Therefore, institutional and homeend-of-life care for the elderly has received much attention in Japan, especially in ruralareas, where there has been a dramatic rise in elderly patients and a serious shortage ofhospital physicians). Incommunity settings, such as long-term care facilities or the home, the role of formalcaregivers is more significant in end-of-life care of the elderly than inhospitals4, ). Formal caregivers also develop acloser relationship with dying patients and their families than hospital staff. Moreover, incooperation with family members, formal caregivers are required to prepare for death and tonotify local medical services of any sudden change in the patients’ condition. As a result,they inevitably need to deepen their understanding of the signs and symptoms of advanceddementia through education.
The main diseases of aged people in end-of-life care are cancer, dementia, and internalorgan failure). Literature onthe pain and suffering of aged cancer sufferers is widely available,,9,10). The research shows the following dominant signs andsymptoms: loss of appetite, pain, whole body malaise, dyspnea, fever, edema, coma, delirium,pleural effusion and ascites.
However, further research on the signs and symptoms of advanced dementia in the elderly isnecessary, especially in light of the fact that end-of-life dementia is increasing,particularly in recent years due to the sharp rise in the aging population,,13). Research on the topic is truly lacking, and relevant datahas not yet been adequately collected13). This is in part because it is difficult to garner clearindications of the signs and symptoms from elderly people who suffer from dementia due totheir impaired and lowered communication and cognition skills13,,). Also, there may be a lack of acknowledgment andunderstanding among nonmedical professionals that dementia is a syndrome causingdeath, , ). This is actually a reflection of the opinions ofmedical professionals who have a strong influence on nonmedical professionals.
Moreover, those caregivers that are at the forefront of end-of-life care of dementiasufferers are not always accustomed to medical terminology, and as a result, theirobservations may differ from the opinions of physicians and nurses. Thus, we recognize theneed for the opinions of formal caregivers regarding the symptoms and signs of impendingdeath of elderly people suffering from end-of-life dementia to be formulated clearly.Therefore, the present study aims at clarifying the signs and symptoms of impending death inend-of-life senile dementia from the point of view of formal caregivers.
Materials and Methods
Formal caregivers are defined as paid nonmedical care providers (including certified careworkers) from a private agency or a government or nonprofit organization in the presentstudy. We used qualitative data based on retrospective analyses. The data was gatheredfollowing a workshop on end-of-life care of the elderly with dementia attended by formalcaregivers that was held in Iga City, Mie Prefecture, Japan, in September 2011. The workshopwas entitled “Thinking about Dementia Palliative Care and Behavioral and PsychologicalSymptoms of Dementia (BPSD).” Iga City, which located in the northwestern part of MiePrefecture, has a population of 100,000. The city is in a typical rural area, roughlypositioned between Osaka and Nagoya. About 27% of the people in Iga are over 65 years ofage. Workshop participants were selected with the help of the social welfare council officeof Iga City from a wide range of people involved in caregiving. Iga suffers from an acuteshortage of hospital physicians, and we therefore believed that the workshop products wouldbe very instructive, since many caregivers experienced with end-of-life care outside thehospital would contribute to the research. We also believed that there would be manycaregivers in this area with bedside experience of death from dementia. These are the mainreasons why our research was based in Iga City. There were 29 workshop participants intotal. The average age of the participants was 46.9 years old. There were 24 female and 5male participants. Eighteen people held administrative positions in their workplaces.
The workshop products were created in the first session of the workshop entitled “Signs ofdeath.” During the session, the participants were divided into smaller groups of 7 to 8people. We used the brainstorming method in the session. Because brainstorming works bestwith a varied group of people, each group consisted of participants who came from variousdepartments across the organization. The rules of brainstorming were “focus on quantity,”“withhold criticism,” “welcome unusual ideas” and “combine and improve ideas.” Also, tostimulate idea generation, the participants were required to take turns stating at least onesign, symptom or premonition of death. This continued until no participants had any originalideas, and at least two signs, symptoms or premonitions of death were required per person.Each group elected a record keeper, who made a list of all signs, symptoms or premonitionsof death stated in each group.
The workshop products were analyzed in December 2011. First, we transferred all the signs,symptoms or premonitions of death from the lists given by each group to individual cards,for a total of 89 cards. Next, in cases where more than two symptoms were listed on a singlecard, we separated the symptoms and listed them on separate cards. For instance, we hadcards for “hypothermia/hypotension,” “melena/hematemesis,” “hallucination/twilight state”and “no reduction in fever/pneumonia,” which we subsequently listed individually on 8 cards.In the end, there were 93 cards in total displaying signs of impending death observed at theend stage of dementia.
These 93 entries were then classified into clear categories by the head author of thisreport and 3 assistant researchers familiar with the purpose of the research. This wasaccomplished by the head author reading out the cards one by one and then the assistantresearchers grouping the cards, which were laid out in front of them, together with othercards that looked like they belonged with them. The head author and the 3 assistantresearchers discussed the groupings and then gave them an appropriate title. Effort was madeto avoid technical terms so as to allow caregivers to relate to them quickly. Carefulconsideration was also taken not to adhere to the usual preconceptions, ensuring a freshapproach to the research topic. Furthermore, we listed separately a number of symptoms thatdid not fit into any of the outlined categories. These “solitary cards” were not excludedfrom the research but were classified as separate entries. Finally, we reviewed the entriesin each category carefully until we reached a consensus among our research team members.This research was carried out with the consent of the Nagoya University School of MedicineEthics Committee (Approval number 82).
Results
The cards were numbered and collated according to category. Table 1 lists the various categories and symptoms listed on thecards. The categories defined were breathing disorder, consciousness decline, vital powerdecline, reduced oral intake, feces disorder, calm and peaceful character, blood pressuredecline, change in skin color, patient odor, edema, preagonal vital power, body temperaturedecline, bedsore/wound deterioration, body weight reduction, cyanosis and oliguria. The mostfrequently cited symptoms fell in the breathing disorder category (12 cards), followed byconsciousness decline (9 cards), vital power decline (9 cards), reduced oral intake (6cards) and feces disorder (6 cards). Also frequently mentioned were symptoms falling in thecalm and peaceful character, patient odor and preagonal vital power categories. Othersymptoms such as ascites and presence of water in the lungs that did not fit into othercategories were listed in the solitary cards category. Other symptoms difficult to classifysuch as family members become kinder and get along better with family, whose interpretationsare difficult to ascertain, were also placed in the solitary cards category, since they wererelated to the theme of this research.
![Late Late](/uploads/1/2/5/8/125885002/439397603.jpg)
Table 1
Signs and symptoms at the end stage of dementia listed by formal caregivers
Category* (number of cards) |
List of words written oncards** (number of cards) |
---|---|
Breathing disorder (12) | breathing hard (2) |
deep breathing | |
increased state of apnea | |
increased yawning | |
keeping mouth open | |
longer state of apnea | |
lower jaw breathing (2) | |
panting (2) | |
shoulder breathing | |
Consciousness decline (9) | decreased vital reaction |
fall into delirium | |
loss of consciousness | |
not responding (2) | |
slower to react | |
slow to respond | |
twilight state (2) | |
Vital power decline (9) | cannot talk |
do not talk | |
increased sleep time | |
loss of desire | |
more frequently somnolent | |
no movement | |
no longer act violently | |
no conversation | |
sleep longer | |
Reduced oral intake (6) | anorexia |
cannot eat | |
cannot eat from mouth | |
cannot even take water | |
cannot take water (2) | |
Feces disorder (6) | appearance of black feces |
kanibaba*** | |
melena | |
tarry feces (3) | |
Calm and peaceful character (5) | become gentle, obedient |
change from obstinate to calm and appreciative | |
express thanks | |
put affairs in order | |
suddenly become gentle | |
Blood pressure decline (5) | blood pressure cannot be measured |
blood pressure decline | |
decline in blood pressure | |
decline in blood pressure/impossible to measure | |
hypotension | |
Change in skin color (4) | skin becomes deadly pale/earth-like color |
skin color changes | |
skin color drains/turns white | |
skin turns pale | |
Patient odor (4) | exude dead body smell (2) |
exude sour smell | |
terrible smell | |
Edema (4) | begin to swell |
edema of extremities | |
edema of instep | |
edema of underside of foot | |
Preagonal vital power (3) | flash of vigor/last flame? |
more talkative | |
sudden appetite improvement | |
Body temperature decline (3) | body becomes cold/hypothermia |
body temperature decline | |
hypothermia | |
Bedsore/wound deterioration (3) | bedsores get worse |
presence of bedsores | |
wounds do not heal | |
Body weight reduction (2) | weight loss (2) |
Cyanosis (2) | blood flow to the distal end of the body blocked/becomes purple |
legs become cold | |
Oliguria (2) | difficulty passing urine |
oliguria | |
Solitary cards (14) | ascites |
bradycardia | |
chocolate-colored phlegm | |
constant fever | |
family members become kind | |
feel lonely and call their family | |
get along better with family | |
hallucinate | |
hematemesis | |
incontinence | |
lips round and thoroughly dried out | |
pneumonia | |
presence of water in lungs | |
pupillary dilation |
* The head author and assistant researchers classified the cards and gave allappropriate title to the groups. ** The responses of the formal caregivers are listed inalphabetical order. *** Kanibaba means death-bed feces in the text.
Discussion
This research has an original approach to its topic, in that it attempts to clarify thesigns and symptoms of death in end-of-life dementia cases from the point of view of formalcaregivers in rural areas. Since the setting of the research was limited to a single ruralarea in Mie Prefecture, Japan, care needs to be taken regarding the interpretation andgeneralization of the results; nevertheless, we believe that this research could helpdevelop formal caregivers’ observational skills in the end-of-life care settings.
The results show that caregivers in rural areas identified symptoms falling into thebreathing disorder category with the greatest frequency, confirming it as a top indicator ofimpending death. Dyspnea was sometimes expressed as breathing hard, panting and shoulderbreathing, and breathing pattern disorders were described as lower jaw breathing. Thesesymptoms are widely observed in end-of-life patients with cancer, dementia and internalorgan failure.
However, regarding breathing pattern disorders, various classifications exist, such asCheyne-Stokes breathing, Biot’s breathing and lower jaw breathing. Because each breathingdisorder has different causes, caregivers should be able to identify breathing disordersmore accurately. Caregivers need to acquire the medical knowledge about breathing patternsand observation points.
Other symptoms falling in the categories of consciousness decline, vital power decline andreduced oral intake were frequently observed among end-of-life dementia elderly in formaldaily care settings). It iswidely known that daily life actions, volition and swallowing abilities decline as dementiaprogresses). Formalcaregivers easily recognized reduced oral intake symptoms as signs of impending death.
Regarding feces disorder, a unique symptom, the Japanese word kanibaba means meconium butis also known by the general public as death-bed feces. Tarry feces and bloody feces aresymptoms that commonly appear in the end-of-life phase18), but they can also appear in curable cases such as pepticulcer. Therefore, they should not necessarily be associated with impending death.
The calm and peaceful character category was considered to provide new insight into theresearch topic. Although prior research indicates that BPSD such as hallucination, anxiety,irritation and shouting loudly are commonly observed among end-of-life dementiapatients), there ishardly any documented reference on mood improvement. It is possible that this could be adistinct sign of impending death in elderly people with senile dementia.
Regarding the preagonal vital power category, we think that this is the same condition thatBarbara Karnes describes in her publication19), referring to terminal cancer patients who become temporarilyactive a few days before death. Our results suggest the possibility that the same symptomappears in cases of elderly people with senile dementia, but there is a lack of sufficientcorroborative research to confirm this. Further research on this topic is thereforeneeded.
A number of caregivers mentioned odor as a foreboding symptom of death, especially thesmell of a dead body. In dementia end-of-life cases, daily-life independence declinesgradually; incontinence usually happens as a result of cognitive function decline, causing afoul smell in elderly people’s living environments. Patient odor in places where the elderlyare cared for has been well documented in literature1, 20). As far as we know, however, the particular smell of a deadbody-the odor that the dead body gives off-has not been documented. It is possible that theworkshop participants assumed that the smell of a dead body meant that the body’s odorundergoes a transition just before death. Understandably, both the smell of feces and thesmell of a dead body exert a negative influence on comfortable bedside care surroundings.For a better outlook on this issue, further research about odor in elderly care locationsneeds to be carried out.
Body weight reduction is often observed among the elderly with end-of-lifedementia21). In fact, aprevious study emphasizes the deep factor connection between body weight reduction and theprognosis of elderly patients). At the dementia end-of-life stage, even if the appropriateamounts of nutrition are given, body-weight reduction still occurs23).
Our study has a number of important limitations. First, because our study was retrospectivein nature, we were unable to ascertain the places of employment of the participants, such aselderly nursing homes or home care settings, which may have been unevenly balanced. Second,there is a high possibility that the symptoms at end-of-life vary depending on where theelderly people are taken care of, and we therefore think that further investigation iswarranted, with a narrower focus on the attributes of the target group, such as researchtargeting long-term care facility caregivers. Third, in this research, a number of typicalsymptoms were not mentioned, such as death rattle, that appear at the time of death. For amore objective interpretation of the results, we think it is necessary to do additionalresearch with an increased number of participants and number of issues.
Conclusions
This research had the original approach of clarifying the signs and symptoms of death inend-of-life senile dementia cases from the point of view of caregivers in rural areas. Theresults show that caregivers in rural areas identified breathing disorder as a top indicatorof impending death. The results also highlight some other characteristic signs of impendingdeath in end-of-life senile dementia cases, such as preagonal vital power and calm andpeaceful character. This research could help develop formal caregivers’ observational skillsin the end-of-life care settings.
Acknowledgments
This study was supported by a grant from the Sasagawa Memorial Health Foundation. Wedeclare that we have no conflicts of interest.
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