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  1. 1. The communication between nurse and end of life dementia patients Reports Submitted By Student Name Course Name University Name
  2. 2. Summary The communication between the nurse and the end of life dementia patients is very decision making and improvement in the end of life care of the patients. Patients with dementia generally die with the inadequate pain control with feeding tubes in a place and without the benefits of the hospice care. In the most care homes the communication between the patients and to the nurse, when the patients is in to end of life and dying with dementia is not that good as because of the less research in this area. With the family care’s perspectives for the patients dying with dementia, research is limited. The available evidence for the research is not enough to demonstrate the actual situation about the end of life and dying with dementia patients. Numbers of family carers think that dementia is not considered as the terminal illness and also think that the life decisions are taken on behalf of the relatives. The decisions by the family carer are also important because these decisions are underpinned by the values of the quality of life. In this case everything depends on the communication between the patients, family members and to the nurse or doctor of the health care home that has been done from the early stage of the condition. In this report we will discuss the most important challenges that will provide the excellent end of life care for the patients who are the patients with the dementia disease not being viewed as a terminal illness. There are great possibilities to improve the end of life care for the patients who are dying with the dementia disease.
  3. 3. Introduction Dementia problem is an increasing issue in the aging population as observed from the research done in the health care activities. It is very difficult to analyse the issue and the need in case of end of life care for the dementia affected people, their families and caregivers. In the healthcare institution it has be observed that number of the people with dementia end their lives there and also in these health care institution there is no or can say very little care is given to the patients and for their needs (Ferri C et al, 2005). In the health care homes where palliative care is given which is basically developed for the people who are caused with the disease of cancer but this kind of palliative care is not appropriate for the people who are caused with dementia. Thus, it is seen as the not providing the perfect care to the patients with dementia and suffer their life at the end of life. Not only this there are is not much proper care provided to these patients in the care homes. The people who suffer with dementia disease need a good and end of life care and active, compassionate approach which will give the support to the individuals and comfort who are caused with dementia disease. The dementia care approach to the patients with dementia need to be very sensitive, cultural and with spiritual values and the practices so that the people need not be have pain during the end of life care. End of life care must encompass support for families and friends up to and including the period of bereavement. The earlier research in the medical activities shows that around 67 percent of the deaths that are related to the dementia disease only happen in the long term care facilities considered as LTC (Mitchell S, 2009). Based on a research by the interdisciplinary team of the nursing who are experts in dementia disease that consists of physicians, social workers, nurses and researches it can be describes as that the communication and the advance planning are the important and main central quality care because these allows to the patients to receive the quality care as per the requirement and also can speak with themselves and ensure to the families to allow them to make the best possible decisions on behalf of the people who are caused with dementia diseases. The communication with the nurse and the patients with end of life care with dementia disease is very important and deciding factor for the end of life care for the patients. The timing of communication about end-of-life and care planning meetings, establishing a proxy decision maker, and educating the resident and family about care and treatments are discussed in detail, and special attention is given to matters such as weighing risks and benefits of pharmacotherapy for residents at the end of life (Small N et al,
  4. 4. 2007). This report is based on the earlier research and the available data from the care homes and medical institutes and also gathering of the data though the surveys and statistics for the communication that happens between the nurse and the end of life dementia patients. It can be said that there is need of improving the conditions of the patients of the end of life care with dementia disease and also for the patients who dies with the dementia disease. Mostly the people with dementia disease die because of the long term care and it becomes more and more important when the population ages. If the long term dementia disease practice can be implemented then it will contribute the more benefit and comfort experience to the people caused with dementia and also the dignified death and caring can be made with supportive environment for the family and to the relatives. Dementia is very different from the other kind of diseases like cancer because these diseases are considered as death causing in many ways but dementia is not because there is death like in cancer etc. The time of death from the diagnosis in case of dementia is normally higher or can say that in case of dementia disease the time of survival is of several years. The recent study in the health care sector describes about the dementia issues as the people who suffer with dementia disease the normal median survival is for four years if the survival duration is short, but also there is contradiction about the ages as some other research describes that the median age for survival for the patient with dementia disease is around 9 years. The physicians or nurses and the families’ member of the patients don’t easily understand the view of someone with dementia as dying. Efforts to diagnose patients at earlier stages, even at a predementia or mild cognitive impairment state, as well as the development of new treatments that can be used in advanced dementia, may make it even harder for many to view patients with dementia as dying. The dementia patients are needed to provide the more care at the end of life and actions should be taken frequently to ensure their activities are good and they are not feeling any issue. The nurses who take care most to these patients and are always in contact, their role is more important towards the patients caused with dementia disease and the communication with the nurses is also an important part in defining or deciding the perfect decisions towards the patients by the nurses and also by the families. During the complete course of the dementia patients it is necessary to decide some activities and also the communication with the patients to understand their need based on the disease. This report also analyse the same as how the communication happens between the nurse and to the patients with dementia and its effects on the patients, families and to the nurses and how they deal with it.
  5. 5. Aim of the Thesis The aim of the report is to find the present situations of the communication between nurse and end of life dementia patients and impact on the patients and to the family as well. What other improvements that can be done for the communication between the nurse an end of life dementia patients. The main focus is on how the care is taken for the patients and how they are being treated in the care homes. The reaction and the decision by the families of the patients and also the help from the nurses are being discussed with the examples and statistics.
  6. 6. Background Research This literature review aims to identify, synthesize and evaluate current knowledge about family carers’ experiences and needs regarding end of life and dying in care homes for people with dementia. The communication between the nurses and the patients with end of life dementia is important to know about the care of the patients and the requirement of the patients at the end of life. The patients who are caused with this disease of dementia need more care and help from the nurses, families so that their care can be done at the end easily. There earlier researches that have been done in this medical and nursing field to know more about the patients who are caused with dementia disease. It has been found from the research that there are more than 24 million people who are living with the dementia disease across the world and it is expected that by year 2040 this number will increase by 81 million so the increase in number can be estimated at a very high rate and so there is need of high care and lots of facilities. In the development countries as the life expectancy decreases and thus the problem of the dementia diseases is not higher as because this probably happens in the older ages. In the developed countries because of the life expectancy increases and also the mortality rate for the other disease reduces so dementia is a problem to these countries because it increases with the age population and thus the dementia is a major cause of death in these developed countries. The course and trajectory of dementia can be protracted and unpredictable. People with dementia often experience ‘gradual death with progressive physical and cognitive losses that result in increased dependency. As a result, a person with dementia requires escalating levels of care, making admission into a long-term care setting such as a nursing home or care home common, particularly in the last year of life. The long term care facility is referred as the care home for the elderly people for their better care and help in the elderly age. The personal care and the nursing to these elderly people are necessary because after some age these elderly people are unable to help themselves. The dementia disease also takes place at the early age so it is very difficult to say that dementia only occurs to the youth. It is very difficult to analyse the number of people who are caused with dementia disease and die in the care homes because of the careless in their care and not proper help to the patients. According to Cox and Cook, there are three ways by which the people die with the dementia disease. The one way is when the people reach at the end of their lives with the dementia disease and dies because of the another unidentified condition such as cancer, in another case there are people who reach at the end of life with a mixture of physical and mental conditions and slowly goes
  7. 7. to the situation of the dementia disease and finally leads to the death of the patient. Thirdly, there are the patients who die with the result of the complications of the dementia and this is generally is reviewed by the dementia diseases which causes the death to the number of people because of the dementia disease. It has been seen that the number of people who are dying with the dementia disease the main cause is that in the care hospitals the patients are not being helped and cooperated there and so because of that the number is increasing. The people with this dementia disease are generally not recognized to be dying but instead of that they are admitted to the care homes during the end time of their life or just before the few days of the weeks of life when needed the treatment conditions such as pneumonia or other kind of urinary tract infection. The evidence that has been found from the earlier researches suggests that these small hospitals for the dementia diseases are not perfect and create the stressful life for their career. It has been estimated that the death rate because of the dementia disease further increases because of the under-diagnosis of the dementia disease. The ratio of the people with the dementia disease who die in the nursing homes because of this in United States of America is around 70 percent and in case of United Kingdom this percentage is around 40 for the older people who die with the dementia disease at care homes or in care home without on site nursing care. The specific nature of dementia disease which is followed on the medical model marked by gradual deterioration of organs and cells along with loss of function that makes the context of care giving specific and constantly evolving. The family of the patients also have to cope with the number of looses because of the longer period of the dementia disease and that results in a high levels of anxiety and also because of the pre death shock. It happens because of loss of the cognitive function that experienced by the patients with the dementia disease. Family members of the patients who are caused with the dementia disease experienced the progressive issues in the elderly age and also contribute in decision making on behalf of their relatives. In present, the recent literature towards the family carers shows that number of people with the dementia disease overwhelmingly focuses on the requirement of the health care homes that copes with the stress and quality of life and also the interventions to ease the burden and the pre death shock that happens because of the dementia disease. Care-giver resilience and predictors of care-giving transition from home to care home are also areas receiving significant attention. The specific literature in the health care industry for the people who are caused with the dementia disease and living in the care homes makes an interest with the transitions of care and extends the relationships between the patients with the disease of dementia and the
  8. 8. family members of the patients. Also the professional care staffs also need to make the decision based on the communication with the patients so it is important to communicate with the patients to know them better. The end of the life of the patients with the dementia disease at the care homes increasingly recognized also highlighted the policy debate. The research on the palliative care in the health care nursing homes is centred based on the provision and also on the quality of the care for the patients with dementia disease. The experiences of the professionals in the health care industry describes that the care of the patients with the dementia disease need very extensive care and help at the end of the life of the patients. In this case the experiences of the family carers are also important because the family play an important role in making the final decision for the patients’ life and care. Based on this experience of the family member, the quality of the life and the death of the patients and also for the good health of the patients can be described as in the better way for the patients with the dementia disease. Rarely have the views and experiences of family caregivers in their own right been elicited. According to the Alzheimer Society of British Columbia (2009), it has been estimated that there are more than 500,000 Canadians who are caused with the dementia disease and more than 50,000 Canadians are dying with this disease and not getting the proper care in the nursing home and so dying the number of patients every year. The data from the British Columbia suggests that there are more than 70,000 British Columbian residents who are living with the dementia diseases and dying every year too because of the lack of the proper care and attention towards the patients who are with the dementia diseases. It is very difficult to address the critical care of the patients and incidence of the dementia disease and also it is very difficult to understand the family perspectives towards the dementia disease and towards the patients too. Dementia disease is very long term disease in the people so the experience of the people towards the economy of the family and the professionals also are not good because being a long term disease it needs high economical expenses and care with active attention (Wilkinson & Lynn, 2005). The complication of dementia disease for the person is very vulnerable to developing the acute illness that results for the lower level and the physical and cognitive functionality in the patients with the dementia disease (Sachs, Shega & Cox-Hayley, 2004). The last phase of the life of the dementia patients as describes by the research earlier, shows that the patients with the dementia disease become very immobile and to these patients there is need of the assistance mostly because they are unable to move and also unable to take care of themselves. All the activities of the daily living for these dementia patients are needed to cater time to
  9. 9. time and for that the nurse communication is very important with the patients with dementia disease. In addition the patient may experience different environment which may reduce the ability of the patients to participate in the meaningful activities and thus these patients feel very uneasy while communicating with the nurses and also find difficult to recognize to their loved ones or their family members. Famous researchers in the medical and health care field stated that instead of help and care from the care hospitals the disease of dementia remains continue of the several years. All the individuals’ patients with dementia disease are considered as to be dying because of the disease (Blasi, Hurley, Volicer, 2002, p. 57). This statement suggests that there is uncertainty that can be identified as dying from dementia disease as when the patient will die or not as the dementia lasts for a longer time. In this respect, Lynn and Adamson (2003) contend that, in the face of multiple chronic illnesses, the concept of dying is not clear; suggesting, there is no distinct transition point in which the person comes to be “dying.”
  10. 10. Methodologies The communication between the nurse and the end of life care of the patients with dementia need to be analyse based on the given facts and figures because it is necessary to know about the decision making process for the care and help to the patients. To know more about the present status in dementia disease and the impact on the patients and to the family of the patients who plays an important role in deciding the last few weeks of the life of the patients with the help of nurse, there is need of have some methodologies to prepare the results through analysis. For this number of methodologies were used such as earlier research paper evaluation & analysis, interviews and surveys, data analysis from the medical institutes or care homes where the dementia is followed for the care of the patients, search strategy and selection criterion, review from the authors and other exerts etc. Few of the methodologies have been discussed below in detail: Search strategy and selection criteria As discussed above in the background research there have been done a research of the earlier research papers and Journals to get the correct data and theories in the health care sector, specifically in the dementia diseases. A systematic literature review was conducted for the healthcare study for dementia disease. The search strategy involves number of electronic databases probably eighteen in number, few websites related to the dementia diseases, specific key Journals, reports and examination papers that are recommended by the subject experts who were working in the same field and also the some references from previous published papers related to the dementia and healthcare disease. A number of range of subject headings, sentences, key words, phrases were used to search the relevant research papers because to get the data for the dementia related diseases there has been a limited research. This research was carried out in May and June 2012 and found the more than 100 references including all. Also the surveys based report collected from the health cares and medical institutions to get the real data from the recent surveys. Number of empirical research papers that contains the qualitative and /or quantitative methodologies and analysis stated as grey literature and also the few case studies of dementia disease were identified to more about the dementia disease and the patients as real case. The Meta ethnographic approach was used to analyse and summarize the original authors based on their research and findings and also according to their terms & conditions that were drawn up for each research papers and the detailed information inside it. The each research paper
  11. 11. themes and findings were compared and analysed so that relationships with the theme and the research can be maintained. The discussed concepts in the research of the earlier papers has been synthesised in a new way and used with the current scenario of the health care industry and the dementia disease. The other qualitative research data in the research and findings in the Journals and research papers were used in the final research and writing the thesis in the health care related dementia disease. The results of the synthesis collected from the number of research papers were shared and discussed in the thesis by the authors to develop the final integrative review of the search related literature. Generally, more than this the number of potential articles from the different related literature were identified basically from the year 1990 till year 2012 from the electronic databases as discussed above and also from other resources. More than ethnographical search and general research the Medline search were used as a combination of the different dementia and health related keywords such as dementia impact, Alzheimer’s disease, and of life care, hospice, and cardiopulmonary resuscitation/CPR. Additional in text citations related search were made to get the important research papers, and also the school library Journal section and book section were visited to get the relevant literature for the thesis. Mostly the important articles such Care at the end of life that has been published by the American Medical directors association in regard to the welfare and help of the patients with dementia. The author’s database were also searched to get the more recent and relevant research for the dementia research topic. Some of these articles report studies in general nursing home populations, which include but are not limited to residents with dementia. However, since more than half of nursing home population has some cognitive impairment, these articles are relevant to the current topic. All the articles and Journals were reviewed and analysed so that the relevant data can be extracted and this data can be used for the current research topic while writing the thesis because for dementia related research there is need of the statistical data too and the trend based on that for the future too. The researched articles were only used if the used research article can introduce the new information for the current research and is based on the practical experimentations because the practical evidences give the more accurate result than based on hypothesis. Most relevant review articles were included if they contained information about research results obtained before 1994 that is still the state of the art. This selection process resulted in the inclusion of 158 studies and review articles. Most of these studies are observational studies and only a few include evaluations of new interventions. Almost none of the studies are randomized control trials. There is almost a complete lack of
  12. 12. research results concerning management of advanced dementia in assisted living facilities. The only available study indicates that end-of-life care is similar in process and outcomes in residential care facilities, assisted living, and nursing homes except that family satisfaction with end-of-life care was significantly higher in residential facilities and assisted living than in nursing homes. Therefore, most of the information in this review will apply to both assisted living and nursing homes. Surveys and Interviews The correct knowledge and the results only can be obtained when the real analysis is done the in the medical sector especially in the fatal diseases like dementia or cancer etc. To know more in reality or based on the practice in the real life there is need to have the views and ideas from the patients and also from the people who are involved in the dementia and related disease activities. For this the surveys and interviews are important to know more in reality. The surveys were done in 5-6 hospitals to know about the dementia and its implications on the real life of the patients and to the family members of the patients and also the nurse whom the patient does the communication from the starting of the disease. The surveys include few questions that are important to know such as how the care is done in dementia disease, what problems are faced by the nurses while communicating with the patients etc. This survey was not only the written surveys, but also the oral questions were asked to know from the patients and the nurses, family members. The surveys were done by the trained person from the health care industry only because the person can answer the question based on the experience in dementia related diseases. The questions that were asked in the surveys were mostly related to the dementia and Alzheimer diseases. Based on the surveys done on patients, family and the professional nurses that mostly the answers were given by the patients as they feel more about the disease and have the impacts on all the people, and then after that nurses replied about all the difficulties and the communication between the patients and to the nurses and family of the patients. Thus from the surveys the analysis of the dementia disease and the patient’s communication is very important and need to discuss based on the result about the patients with dementia disease in the research. Interview is also an important aspect of the research and analysis in the health care industry mainly in the areas where there is not much research done on the topic. Similarly, in case
  13. 13. dementia disease it is important to get the oral interview from the patients and from the professional nurses in more detail. The surveys are only based on the few questions but this interview is based on the real life feelings and practices in the health care industry and in dementia disease in the patients. The interview was done for around 1.30 hours for each nurse and only 30 mins from the patients because the patients with dementia feel uncomfortable for a long time. In interview the whole process as how they get the care there? What problems they feel there? Also the how nurses can feel difficulty with the patients and how they communicate with them? Is the communication with the patients of nurse is easy or tough? What suggestion they want to give for the patients with dementia and also for the nurses what changes they want in the system or in the care homes hospitals? In this interview from the 6-7 medical professionals, who were experts in the dementia disease and to with the patients who had suffered with the disease and living at the end of life find that more than 50 percent of the patients were uncomfortable with the care that they get at the care hospitals and also the more than 40 percent nurses said that the communication is very difficult with the patients with dementia as it is hard to understand them easily. Statistics Analysis Statistical analysis was also done to get the trend for the last years for the dementia disease and also the behaviour and decision of the family members of the patients. The report database and health care organizations are very useful in getting the data for the characteristics of the dementia disease and also about the patients. The government health ministry of the specific country have the data for the dementia disease so these data were taken to analyse the trend about the patients with dementia and also about the nurses and to the family of the patients with dementia. Thus the interviews are more important to decide what to analyse in the report related in the health care industry and also the dementia diseases. Therefore, the research studies, surveys, interviews and statistical analysis are very much important in deciding the final outcome and trend in the healthcare sector mainly in the dementia diseases and the impacts on the patients. The other methodologies were also used to analyse the findings about the recent status of the patients with dementia disease. The search revealed that plethora of a research related to the dementia end of life care for the patients and the entire article for the research states that the relevance of the topic to the health care homes and dementia is very important to know while doing the thesis. The statistical information from the literature and earlier research represents
  14. 14. the trend and future possibilities in the health care area. The qualitative and quantitative studies are also needed to write the research report and also the in-depth interviews were conducted to making the decisions about the patients with dementia disease. Only a handful of studies were RCTs and only a few included an evaluation of a clinical intervention. Discussion papers that examined advanced dementia end of life care were also kept to help inform recommendations.
  15. 15. Results and Analysis The most important thing is to know about how the current status of the patients with dementia is in the health care homes and what nurses communicating with the patients and the impacts of the communication in the decision making process for the patients. There were more than twelve research papers that were studied for the dementia disease and also the behaviour of the patients and the family members. These papers were identified so that the research criterion can meet with the inclusion of the theory and data. More than research papers, case study in Australia, surveys, interviews and statistical data were observed to get the trend of the dementia disease and the behaviour of the patients and family member behaviour and their decision making ability. Out of these the most important aspect of the methodologies was surveys and research of the past authors because the real information about the patients with dementia and the impacts of the dementia on the patients and professional nurses can be analysed. The result that were obtained from the research papers seem to be more genuine because in those selected research papers the data and survey analysis was based on the real factors few years back. Based on the case study in Australia and England in the healthcare field and moreover in the dementia and Alzheimer, because the dementia issue is more in the developed countries because of the increasing life expectancy and decrease in infant rate of the other disease, it can be said that in the patients with dementia disease suffer more in the health care homes because of the lack of the proper facilities and care to the old aging patients. The cross national comparison data from both the country England and Australia were collected and also from the USA, Canada because of the high increasing rate of the dementia disease in the people. In these developed countries there are more nursing and health care homes for the aging people to provide them the good service and also the last weeks of life to live with full care and peace but still instead of these cares and facilities for the aging people the cases of the dementia are increasing rapidly. As from the one research it has been found that in the entire world by coming 2040 the increase in patients with dementia will be reached by 81 million so it can be estimated that how the increasement will happen for the dementia disease in the entire world. Based on one research paper that the survey data used to analyse the end of life care in dementia disease and this shows that the findings in the research will only made the partial satisfaction with the little bit improvement using the specific care tool for the dementia disease. This study was also done to get the emotions and feeling of the family members
  16. 16. towards the patients with the dementia disease. Three of the studies were longitudinal, two of which collected qualitative data. One study used a concurrent mixed methods design and one used a prospective cohort study design. The remaining nine papers report exploratory studies using individual interviews or focus groups with family carers. Eleven of the papers describe the setting as either ‘nursing homes’ or ‘long-term care facilities’. Whilst the twelfth was conducted in a ‘hospice unit’, the majority of research participants were care-givers of people with dementia living in a long-term care facility and receiving care/support from a hospice service. Clearly, each of the research done for the patients with dementia problem and conducted within the context of its own activities that also include the legal and health care system and these conducted research helps in decision making process for the help of patients with dementia disease. In the developed countries it has been found that the people with the dementia disease of the family members and the individual level appear for the dementia issue. The result derived from the other research papers that the people with the dementia disease will no longer survive in the health care because there is not proper care for the people with dementia and also there are no proper facilities available which can help to the people with dementia if there is no nurse available in the care homes. The decision making practice for the family member and for the nurses about the care of the people with the dementia disease. There are three main themes as a result from the earlier research that has been done in the health care sector and also for the dementia disease as well. The three main themes for the dementia disease are unfamiliar territory, making decisions and the grieving carer. Unfamiliar territory In the care homes for the people with dementia disease there are few things need to describe such as lack of knowledge, bad communication or poor communication, and also other is active interventions that are needed for the people who are with the dementia disease and these effort are done for the best cause of the dying relative. The family member of the people with dementia feels that there is lack of the knowledge to the family member of the dying process and also these family members wanted to understand that what was happening in the home care at the end of life of the loved ones during their last weeks of life. The family members of the people with dementia need to know about the professionalism of the nurses and also the disease progression and also wanted to know about the treatment processes because every family member of the people needs to know about all these things about their
  17. 17. loved ones. Family carers tended not to regard dementia as a terminal illness, and the process of dying was not recognized. According to the Forbes magazine, the used analogy about the journey of the people with the dementia disease and also about the caring of the such person is like a rocky road and always need to care about them because during the last week of their life it is necessary to provide the best cares to them so that their life became easier at the end of life. Even though, it has been found that the number of people in the developed countries have dementia disease more because of the increasing life expectancy. Increasing number of the health care homes making the life expectancy higher because the aging people getting the proper health medication during their old age. The government of the developed countries also helping the older people to get the proper medication and also providing the financial help in getting so and this is the reason the life expectancy is increasing and the problem of the dementia disease also increasing with it. The horizon of the journey of life with the dementia disease tended to be limited and in this there is also a important role in the care of the people with dementia disease by their family members. The every change in the life of the person that happens day to day and slowly - slowly become issues as a big picture and this indicates a picture as a general decline where there are chances of dying the family member with the dementia disease. The every family member of the people with dementia disease said that they get worry when discuss about the end of life care prematurely. They consider that the end of life care for the people in dementia need to be focused and there care is must and also it affects their communication with the medical professionals. From the family point of view it can be said that the verbal communication lack between the people with the dementia disease and to the nurses indicates about the end of life issues. Also the family care described about the implicit ways which have been learnt by the family members during the time when the dementia disease was worsening to their loved one. For example, the people who considered as to be dying after some tome were removed from the social activities, they left their relatives, they felt anxious and they were very confused about their life and future because they were unable to do the daily activities. Thus there were few things that are needed to understand by the family members so that the people with dementia can be cared easily and they live their life with more willing during the last days of their life. The perfect knowledge about the processes is very important to know about the people with dementia disease and its death processes.
  18. 18. Making decisions The decision making process towards the people with the dementia is very necessary because the decision taken by either the family member of the patient or by the nurse is in the benefit of the people with dementia. The role of the family member is most important because they are the people who have taken care about the person earlier and know about him/her better. In the decision making process the role of the family member is unforgettable for the person with dementia who is living the care homes and the disease is defined and the unclear. The studies have shown that the family cares always wish to remain involve in all the decision making process for their loved one who are with the dementia. Whatever decision is taken for the people with the dementia should be based on the family members thought as they are the only people to decide about the person’s life at the end of their life time. The nurses or medical professionals who are involved in the communication with the people with dementia need to contribute in the decision making process with the help of the family members because the nurse after the family member is the person who take cares of the people with dementia and also communicate with him occasionally. When it is found that there is uncertainty about the life of the person with dementia disease then the family carers responsibility is to make the decision according to the current need of the patient and also based on the advice of the nurse who communicate with the patient. Family care givers used a range of values to underpin the decision-making process, including quality of life, honouring previously expressed wishes, the personal history of the person with dementia, the preservation of dignity and the provision of comfort. The grieving carer It is sure that if any person from the family gets in trouble that other member of the family also feel very uncomfortable and restless because of the situation of the other family member who is with dementia. This leads to the family member to take decision on behalf of the life and treatment of the family member with dementia towards their end of life. Family carers had strong personal needs during this period: they wanted frequent contact with staff; they sought empathy, reassurance, understanding, guidance and communication. The family member’s tries to attempt to connect with the medical professionals with the personal things so that the medical professionals who communicate with the patients can discuss all the things with the family members about the people with dementia. The family member of the patient when gets the complete information from the nurse or medical professional such as fear, anger, guilt and other behaviour about the person with dementia, they feel validated and
  19. 19. goes for the final decision making process about the life and treatment. The death of the person with the dementia for the family member seems as blessing and also a tragedy because one of the family members has left them forever. If the conduct of the nurses or medical professionals is not good towards the person with the dementia then it is very difficult for them to understand the reality about the family member with dementia and also the strength of making the decision process increases and the family member can decide about their end of life and the treatment easily. Reviews of the people Patients Nurses Family Others Fig: The surveys answers given the different people The above figure about the surveys answers done for nurses, patients, family members and other people suggests that there were most answer given by the patients as they know more about the dementia disease because they are facing it and also can explain about the health care professionals and services that they are getting during their stay in the health care homes. The next is the medical professionals or nurses who know more about the dementia and related disease effects on the patients and also about the communication between the patients and to the nurse, the nurse can only explain. The family members and the other people also know more about the dementia and its relevant impact on the patient because they are seeing it for a long time as the patient suffers with the dementia disease in their own family. The below chart is about the trend of the patient with dementia disease from the year 2010 to year 2040 which indicates that how the trend of the dementia is increasing with the ageing population over the time mostly in the developed countries because of the increasing life expectancy of the aging people as increasing number of the health care facilities. In year 2010 the dementia issues are 21 million in the world and by the year 2040 the dementia issues will be increased by 81 million. In the development countries the life expectancy is not so much higher as in the developed countries therefore it can be said that the dementia disease increases with the ageing in developed countries.
  20. 20. Trend of the patients with dementia 100 80 60 Trend of the patients with dementia 40 20 0 2010 2020 2030 2040 Fig: The trend of the patient with dementia disease The above analysis suggests that how serious is the problem of dementia in the developed countries and this is increasing with the time. It is important to analyse the dementia cases in these countries and to take action accordingly based on the results and analysis obtained from the earlier researches. Also the collected data from the number of medical institute and research institute suggests that the increasing number of dementia disease need to be controlled because it will cause the problem to the older people and mostly in the aging persons as this dementia remains for the several of years. The results obtained and literature discussed above indicates that the people with dementia need more care and help during their few weeks of end of the life. Also the decision towards the people with dementia is taken by the family members based on the advice of the medical professionals or nurses. The final decision is taken based on the communication with the nurse and by the family or relatives of the person with the dementia.
  21. 21. Discussion The communication between the nurse and medical professionals and to the person with dementia is most important because it decides the fate of the person with dementia. It can be strongly said that if there is no communication with the nurse to the patient with dementia disease it will be very difficult to know more about the person what is the problem he has and what help the person needed. The literature review above indicates that many researchers have stated in their research that the patient with dementia disease need active care and strong attention in the care homes to live their life peacefully. The literature review also describes that there has not been much research in the dementia disease and also for the communication between the nurse and to the patient with dementia disease. But this research shows that there is high levels of unmet need for that there is finding of the solution. Even though the many researchers suggested that solutions The issues raised by this review of the literature are multifaceted and therefore need to be addressed at various levels, through research, policy, education and practice. From a research perspective there is limited research in the area, a lack of longitudinal studies and a lack of studies involving interventions or clinical trials. The ‘disengaged carer’ is identified and described in only one study, raising the question: ‘Is this a unique finding or have other studies failed to recognize this group, due to the methods of recruitment or to the research approach?’ The obtained results and literature study suggests that the family members are the most important people because all the decision are taken by them towards the treatment and their life because these family members take the decision based on the advice of the nurse or medical professionals because the medical professional is the person who communicate with the patient with dementia disease. Every family want to connect with the medical person and want to everything about the process of death and other processes. The communication, information and other activities for the patient with dementia disease help in decision making process. The things that is necessary for the good practice of the dementia disease because the patient with dementia disease need to spend the last few weeks at the end of his /her life. There are number of models which are being used by the nurses to take care of the patient with dementia disease and also communication with them because without communication it is very difficult to understand about the behaviour of the patients. Finally it can be observed that from the above analysis too that the dementia is increasing in the developed countries and need to control it but the problem is that this is only increasing because of the higher life expectancy and availability of the number of medical facilities for the ageing people.
  22. 22. Conclusion The above analysis shows that there are many issues in the end of life of care of the patient with dementia disease and it is increasing rapidly in the world. There are not much research available in this area but still the present research describes that the communication is the most important aspect of the patient with dementia disease because it helps in deciding the treatment of the patient with dementia disease and also help in making the decision by the family.
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