The communication between nurse and end of life dementia patients

Reports Submitted

By

Student Name

Course Name

University Name

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.

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,

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.

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.

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

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

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

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.”

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

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

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

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

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.

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

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

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.

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

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.

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.

Reviews of the people

Patients

Nurses

Family

Others

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.

0

20

40

60

80

100

2010 2020 2030 2040

Trend of the patients with dementia

Trend of the patients with dementia

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.

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.

References:

2. Walliman, N.S.R. (2005) Your Research Project:A Step-by-Step Guide for the First -

Time Researcher (2nd Ed) London: Sage Publications

3. Fink, A. (1998) Conducting Research Literature Reviews: From Paper to the

Internet. London: Sage Publications Ltd.

4. Alzheimer Society of BC (2009). Put your mind to it: Make change happen for those

living with dementia. Brochure

5. Wilkinson, A., & Lynn, J. (2005). Caregiving for advanced chronic illness patients.

Techniques in Regional Anesthesia and Pain Management, 9, 122-132.

6. Neelam Afzal, Kurt Buhagiar, Joanne Flood, Mary Cosgrave,General Hospital

Psychiatry, Volume 32, Issue 2, March–April 2010, Pages 141-146

7. Joseph W. Shega, Gavin W. Hougham, Carol B. Stocking, Deon Cox-Hayley, Greg

A. Sachs,Journal of Pain and Symptom Management, Volume 35, Issue 5, May 2008,

Pages 499-507

8. Mette L. Rurup, Bregje D. Onwuteaka-Philipsen, H. Roeline W. Pasman, Miel W.

Ribbe, Gerrit van der Wal,Patient Education and Counseling, Volume 61, Issue 3,

June 2006, Pages 372-380

9. Zuzka V. Blasi, Ann C. Hurley, Ladislav Volicer,Journal of the American Medical

Directors Association, Volume 3, Issue 2, March–April 2002, Pages 57-65

10. Dawn Felch Rondeau, Terri A. Schmidt,Emergency Medicine Clinics of North

America, Volume 27, Issue 2, May 2009, Pages 341-354

11. Small N, Froggatt K, Downs M. Living and dying with dementia: Dialogues about

palliative care. Oxford: Oxford University Press; 2007.

12. Russell C, Middleton H, Shanley C. Dying with dementia: the views of family

caregivers about quality of life. Australasian J Ageing 2008; 27:89–92.

13. Ana Tuya Fulton, Jennifer Rhodes-Kropf, Amy M. Corcoran, Diane Chau, Elizabeth

Herskovits Castillo,Clinics in Geriatric Medicine, Volume 27, Issue 2, May 2011,

Pages 153-170

14. Hertzberg A, Ekman S-L. We, not them and us? Views on the relationships and

interactions between staff and relatives of older people permanently living in nursing

homes. J Adv Nursing 2000; 31: 614–22.

15. Els Bryon, Chris Gastmans, Bernadette Dierckx de Casterlé,International Journal of

Nursing Studies, Volume 47, Issue 9, September 2010, Pages 1105-1116

16. Journal of the American Medical Directors Association, Volume 8, Issue 3, March

2007, Page B16

17. Siew Tzuh Tang, Chung-Yi Li,Journal of Psychosomatic Research, Volume 64, Issue

2, February 2008, Pages 195-203

18. Esther Chang, Karen Hancock, Kathleen Harrison,Nurse Education Today, Volume

25, Issue 4, May 2005, Pages 326-332