Impact of Dementia on UK Families

This study analyzes the social and economic impacts of dementia on families in the UK. It discusses the problems faced by caregivers and family members, the legislative acts implemented by the UK government, and provides recommendations to ease their problems.

UNIT 6 RESEARCH PROJECT
ASSIGNMENT
STUDENT NAME:
STUDENT ID:
PROFESSOR NAME:

Table of Contents
Chapter 1: Introduction....................................................................................................................3
1.1 Introduction................................................................................................................................3
1.2 Study Background.....................................................................................................................3
1.3 Study Rationale..........................................................................................................................4
1.4 Aim and Objectives of the Study...............................................................................................4
1.5 Questions of the Study...............................................................................................................4
1.6 Significance of the Study...........................................................................................................5
1.7 Overall Structure........................................................................................................................5
1.8 Summary....................................................................................................................................6
Chapter 2: Literature Review...........................................................................................................7
2.1 Introduction................................................................................................................................7
2.2 Conceptual Framework..............................................................................................................8
2.3 Critical analysis of social and economic impact of dementia in UK families...........................8
2.4 Theories related to dementia......................................................................................................9
2.5 Critical analysis of factors related to dementia........................................................................10
2.6 Impact of factors and Rationale for conducting this research.................................................11
2.7 Legislations and policies of the government...........................................................................11
2.8 Implementations and interventions..........................................................................................12
2.9 Gap analysis.............................................................................................................................13
2.10 Summary................................................................................................................................13
Chapter 3: Research Methodology................................................................................................14
3.1 Introduction..............................................................................................................................14
3.2 Methodology Selection............................................................................................................14
3.3 Research Philosophy................................................................................................................14
3.4 Approach of the research.........................................................................................................15
3.5 Research Design......................................................................................................................16
3.6 Data collection methods..........................................................................................................16
3.8 Data analysis techniques..........................................................................................................18
3.9 Ethical consideration...............................................................................................................19
3.10 Summary................................................................................................................................19
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Chapter 4: Data Analysis...............................................................................................................20
4.1 Introduction..............................................................................................................................20
4.2 Thematic analysis....................................................................................................................20
4.3 Summary..................................................................................................................................25
Chapter 5: Conclusion and Recommendations..............................................................................26
5.1 Conclusion...............................................................................................................................26
5.2 Recommendations....................................................................................................................26
5.3 Areas to study further..............................................................................................................27
Reference List:...............................................................................................................................29
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Chapter 1: Introduction
1.1 Introduction
Dementia is one of the worst diseases that can affect any patient. They not only lead to the
suffering of the patients themselves but also cause excessive suffering to families, relatives and
those who are close to them. The following study attempts to deal with details regarding the
impact of this disease on families based in the United Kingdom. Proper data regarding cases and
their critical analysis along with a thorough study of their features have been done. Increasing
number of cases of dementia in people, especially those over the age of sixty has become an
immense cause of concern for people all over the country. Negative effects, as well as social and
economic problems that families have to face and deal with, have been covered in this study. The
conducted research also has the aim to highlight methods and legislations implemented by the
government in response to this crisis. These studies and discussions have attempted to justify the
importance of studying and eventually preventing an onset of cases of dementia. Methods that
are going to be adopted in this study as well as main aims and objectives of conducting this
research have also been discussed. The significance of this study has also been illuminated, and
they can shed some light on the increasing number of dementia cases as well as their effects on
the families of the patients, as well as methods to overcome them.
1.2 Study Background
According to Car et al. (2017, p.26) a very alarming issue that has recently come to light is the
increase in the number of patients suffering from dementia in countries including the one chosen
for review in this study. Around 800,000 people are suffering from dementia in this country, with
expenditure and costs ranging from 25 billion to 26 billion Pounds per year.
Social problems plague the families of those who suffer from dementia. They suffer problems
ranging from a change in relationships between family members to being isolated by other
members of society. This social isolation can cause great problems and difficulties. People living
in the surrounding areas are reluctant to help these families with even simple matters, resulting in
an increase in problems even in the tiniest matters (Connolly et al. 2014, p.17).
In order to care for patients, caregivers have to sacrifice their own time and potential
opportunities for jobs. This can have tremendous impacts on the financial condition of these
families. In addition, they have to deal with extra costs for expensive medications for this
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disease. It has been observed that almost 54% of caregivers struggled to pay costs of their
households.
1.3 Study Rationale
What is the issue?
The increase in a number of patients suffering from dementia and diseases such as Alzheimer's
disease are the main issues that need to be studied. In addition, this causes a tremendous strain on
families who are tasked with their responsibilities. These families face severe economic and
social problems that have to be addressed in order to benefit them as soon as possible.
Why is this an issue?
This is mainly an issue that has to be addressed as soon as possible due to its negative
consequences on these families. Almost 54% of caregivers are struggling to pay for their
household jobs, and most of these people are even unable to go to work due to additional
responsibilities. It has been observed that failure in dealing with these issues will definitely lead
to an increase in the percentage of caregivers struggling to take care of their expenses.
Research Focus
This research aims to shed some light on the social and economic impacts of dementia on
families in the United Kingdom.
1.4 Aim and Objectives of the Study
Main Aim
As mentioned before, this study aims to point out problems of social as well as economic natures
caregivers and family members of those suffering from dementia suffer from. This study hopes
to illuminate those issues.
Objectives of this Research
 To discuss social problems of those whose family has a patient of dementia
 To discuss economic problems of those whose family has a patient of dementia
 To analyse their impacts
 To recommend possible ways to ease their problems
1.5 Questions of the Study
Q1) What is dementia and how does it impact its patients?
Q2) What are the problems that it inflicts on caregivers of patients?
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Q3) What are the social and economic impacts that it has on the families of these patients?
Q4) What are the tactics and methods that can be implemented to check these problems and
impacts?
Q5) What are the main strategies that can be implemented in order to help these people?
1.6 Significance of the Study
Research conducted here is aimed to analyse the impacts that dementia has on families based in
the UK. This study provides a valuable insight into causes and symptoms of dementia as well.
This is so because, in order to understand and analyse effects of a disease on families, it is
mandatory that that disease is understood fully first. Studies conducted here can be added to the
ever increasing store of knowledge on this disease, which is one of the most devastating diseases
known to mankind. Furthermore, analysis of social and economic impacts that this disease has on
families having patients plays a very crucial role in bringing their plight into the light. Also, it
provides potential solutions to their problems, which have a high probability of success. This
study has also taken into account legislations involved in these case that can provide help in
dealing with such issues. It also proves to be a big help in pointing out sectors in which the UK
government has proven to be successful as well as parts where they proved to be failures.
1.7 Overall Structure
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Figure 1: Overall structure
(Source: Created by Self)
1.8 Summary
Thus, this chapter has successfully illustrated the need to conduct studies of this nature. It is very
important that analysis of social and economic impacts of dementia on UK families is conducted
properly, for it can potentially provide a solution for decreasing the plight of family members
and caregivers of dementia patients. Importance and significance of this study, along with its
main implications have thus been justified.
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Chapter1:IntroductionChapter2:LiteratureReviewChapter3:ResearchMethodologyChapter4:DataAnalysisChpater5:ConclusionandRecommendations

Chapter 2: Literature Review
2.1 Introduction
Dementia is a disease that has been proven to be one of the worst diseases that can affect human
beings. Several discussions and research projects globally are underway to find an effective
treatment for this disease. Treatments and prevention of damages that are caused by this disease
have almost equal priorities. The main topic under review here is an analysis of social and
economic impacts of dementia on families based in the United Kingdom. These problems can
affect such families profoundly and immensely.
This chapter aims to discuss and review work done by other people, including scientists as well
as those who study social impacts of ailments on people and their surroundings. It also aims to
discuss flaws and limitations of most of the existing literature on this topic. Pointing out and
analysing flaws that are present in existing literature are important as they can point out
deficiencies that can result in the effective formulation of tactics. These tactics have a very high
chance of succeeding as they are formulated after efficiently studying drawbacks of existing
methods and studies. Main ways of addressing these issues also help in removing existing flaws.
Removal of such flaws plays a very important role in addressing main problems of these existing
issues. This chapter includes factors as well as their contribution to this issue in detail and
attempts to critically analyse this topic based on studies of several different sources such as
journals. Thus, this chapter puts the spotlight on ways and thought processes used by others to
conduct research regarding this topic, aimed at analysing and eventually solving issues of
families having dementia patients.
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DEMENTIA
Legislative Acts
implemented by the
UK government
(Mental Capacity
Act 2005)
Social and
economic impacts
of dementia on UK
families
Theory of ageing
and theory of
molecular
pathology
2.2 Conceptual Framework
Figure 2: Conceptual Framework
(Created by Self)
2.3 Critical analysis of social and economic impact of dementia in UK families
According to de Vugt and Verhey (2013, p.56) it has unfortunately been observed that a number
of dementia cases have been on the rise in the UK. This has taken a severe toll on overall health
expenditure costs of the UK government. Main problems, however, stem from the impact that
this disease has on families of patients. Some of these problems can be classified under different
sections titled social and economical.
Erol et al. (2016, p.1323) observed that main social problems include social isolation inflicted by
other members of society and even family members. Isolation definitely leads to severe problems
as others even refuse to interact with or help either these patients or their caregivers in any way
possible. Simply put, they even refuse to interact with them. Indeed, around 83% of caregivers
and family members of dementia patients have confessed to feeling very lonely and isolated.
Farina et al. (2017, p.88) stated that many times, these cases have also led to a deterioration of
relationships between family members. Many relatives who do not live together with patients
often tend to avoid them and refuse to be associated with them or their caregivers. More than
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51% of the families have faced bad relations with certain relatives due to these issues. This
results in straining of many relationships to the point of never reconciling. However, it is argued
that many families have loving and caring relatives who go out of their way to help their
relatives who are suffering. They often take shifts in determining who will take care of the
patient so that the principal caregiver can take a much-deserved break.
Gardiner et al. (2014, p.388) mentioned that dementia also has economic effects on people
involved with caring its patients. Most often, people who have been allocated sole responsibility
of dementia patients have to dedicate all of their time to caring for them. This naturally decreases
any chance of them being able to work effectively in any job. This has a profound impact on
financial conditions of that household. These problems lead to a very problematic situation
where they are unable to meet household costs. Indeed, almost 83% of caregivers have confessed
to being unable to meet their overall expenses. In addition to these problems, costs of medicines
used for their treatment are often very costly.
According to Harper, S., (2014, p.590) it is observed that many people receive help from
government legislations and regulations. They have to exploit these helping procedures in order
to effectively help their families. Financial and economic problems can be somewhat mitigated
using proper exploitation of these legislations. However, it is to be noted that even such
regulations have been unable to fully help all families faced with the aforementioned social and
economic problems.
2.4 Theories related to dementia
Hutchinson et al. (2016, p.611) have stated that there are several theories that have been
proposed to be causes of this disease. One of these theories is closely related to the theory of
ageing. Different mechanisms and processes have been proposed to be responsible for the overall
process of ageing. These mechanisms include autoimmune changes, oxidative stress, loss of
telomeres over the course of life, apoptosis and even alterations of neuroendocrine. This theory
mainly states that abnormal acceleration of these processes several times faster than normally
observed values have been observed in dementia patients.
According to Jones et al. (2014, p.89) brain damages related to age may also be a result of
dysfunctioning of the neuronal cytoskeleton. Damage to particular mitochondria that are
responsible for maintaining neuronal energy is also probable causes. Damage to this kind of
mitochondria diminishes overall neuronal energy. Again, damaged mitochondria of these kinds
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are often found in patients with this disease. Thus, this theory attempts to correlate abnormal
acceleration of certain processes which are common reasons of ageing to an onset of dementia
diseases like Alzheimer's.
Knapp et al. (2014, p.99) have mentioned that other observations from an overall ageing process
that are among the main causes of dementia include formation and eventual observation of senile
plaques. The decline in cognitive abilities has led to a loss of synaptic connections. These have
eventually been observed to lead to problems like neuronal death as well as alteration of overall
metabolism of neuronal energy. These factors have been observed to be very prominent in
patients suffering from dementia, lending credibility to main points of this theory.
Kupeli et al. (2016, p.86) have mentioned that another relevant theory in this field is the theory
of molecular pathology. Some forms of dementia have been observed and studied in keen details.
These observations and research projects have led to the conclusion that the presence of an
abnormal molecular pathology, such as abnormal tau, have been observed in and eventually lead
to patients suffering from certain forms of dementia. Autopsies have led to observations that the
amount of abnormal tau has been exceptionally high in dementia patients. This correlation
cannot be coincidental, and their relation to onset of this disease cannot be ignored or
underestimated.
2.5 Critical analysis of factors related to dementia
According to Larkin and Milne (2014, p.27) there are four main types of dementia that are very
common in people above the age of sixty-five. They include Alzheimer's disease, diffuse Lewy
body disease (dLbd), dementia induced by alcohol as well as vascular dementia.
Maresova et al. (2015, p.905) have studied that accumulation of multiple ischemic, embolic or
hypertensive are among the main reasons of vascular dementia. Observations of several people
afflicted with this form of dementia have shown pathologies of white matter and cortex.
Dementia that is of frontal - temporal nature is most common in people under the age of 65.
Several features of its molecular pathology have been observed, however. This includes, but is
not limited to abnormal tau (Milligan and Thomas, 2016, p.7). No specific preventive
interventions have been observed in most of these cases. Studies have indicated that most people
suffering from dementia in one form or the other have a very high mortality rate within a couple
of years of being diagnosed with the disease.
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According to Mockford (2015, p.23) several factors that have been observed in most cases of
dementia are still not universal. Many people suffering from this disease often show two or three
processes of diseases when their brains are examined during an autopsy. Almost 91% of patients
show different kinds of autopsy results. Nearly all cases have shown a rise of nearly 77% in the
number of senile plaques observed in their brain neurone networks.
2.6 Impact of factors and Rationale for conducting this research
Nikmat et al. (2015, p.117) have stated that impact of these factors that are of social,
psychological and economical natures are profound. As mentioned before, patients, as well as
their families, have to face problems related to social isolation. They are generally isolated by
other members of the society and other members of their own families. This isolation often leads
them to be unable to ask for help even regarding basic matters. This, in turn, often leads to
excessive pressure on caregivers, as they have to handle effective functioning of several tasks
simultaneously. In addition to worrying about those who are under their care, they have to take
care of financial and economical aspects of their households as well.
Papastavrou et al. (2015, p.2907) argued that since caregivers have to demonstrate absolute
concentration and dedication in order to effectively care for their patients, they are unable to
dedicate any time to fulfil their own important tasks. These tasks include, but are not limited to,
jobs. Being unable to even go for a job leaves them in dire financial and economic straits most of
the times.
According to Tolhurst et al. (2014, p.195) more than 80% of caregivers have confessed to being
burdened by extra responsibilities, which in turn led to them being unable to work at any place of
employment properly at all. This led to a drastic decline in income. This, coupled with the fact
that costs and expenditures often reach a new high while purchasing medicines and health
services, leads to a deep economic crisis for those families.
2.7 Legislations and policies of the government
One of the main legislations passed by the UK government is the Mental Capacity Act 2005. It
basically clarifies the actual legal position of people who are providing help to patients of
diseases such as dementia, and thus, people who lack the capacity to perform their own actions
or take their own decision for themselves (van Baal et al. 2016, p.81). This legislation is aimed at
providing help for caregivers and family members of patients suffering from such diseases. They
include:
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 Capacity presumption
 Supporting individuals to allow them to make their own decisions
 Freedom has to be accorded to individuals to make their own decisions, regardless of
whether they are wise or not
 Always performing actions in the best interest of a person
 Using a less restrictive option - This Act provides access to a test that can assess a
person’s capacity to take any particular decision
Werner et al. (2016, p.198) agree that this legislation has also provided mechanisms such as
attorney lasting power and decisions made in advance in order to refuse any kind of treatment.
This enables people to retain at least some control. These measures also provide tremendous help
for people to ensure that their wishes are accepted and implemented in any situation regarding
future mental capacity loss.
According to Vernooij-Dassen and Moniz-Cook (2014, p.79) basic understanding as well as
implementing this Act is necessary for people providing care for those living with dementia. The
Act and its code of practice are applicable to all members of staff working with people who are
lacking in mental capacity.
2.8 Implementations and interventions
The UK government has made policies and legislations such as the aforementioned Act to
provide relevant help to caregivers and family members of those suffering from this disease.
However, simply relaxing in the face of this policy is not enough. Many people who are family
members of such patients still suffer from problems such as social isolation as well as
psychological problems of excessive pressure and loneliness (Wimo et al. 2014, p.307).
Government policies that can prevent problems such as social isolation have to be implemented.
This is to provide benefits to patients and caregivers so as to prevent their being ostracised in the
society. The government also has to make sure that implementation of these policies takes place
in a proper manner. Regular checks and surveys can help in bringing forth and eventually
alleviating the pain that most care providers and family members of dementia patients have to
face on a daily basis (Wimo et al. 2013, p.10).
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2.9 Gap analysis
The main literature review was done in this chapter deals with social and economic impacts of
dementia on families based in the UK. The main gap in research conducted by authors that have
been compiled in this section is the lack of correlation of several aspects of patient behaviour.
While patients have been analysed and studied, along with there being mentions of some aspects
of their behaviour which can lead to problems such as isolation (unwillingness of interaction),
other behavioural aspects such as violence and aggressiveness are not covered abundantly. These
aspects have to be understood in order to help governing bodies to formulate even more effective
strategies. Proper analysis of several relevant aspects of patient behaviour and how they may
affect their interactions with others have been covered in this research project.
2.10 Summary
This chapter has illustrated various research conducted by several different authors. Explanations
regarding dementia and its main causes have been given in this section. This chapter has also
provided relevant details regarding social and economic impacts of dementia on Families living
in the United Kingdom. Critical analysis of main factors and theories related to dementia has
been given as well. Main legislative Act implemented by the UK government for caregivers and
family members of dementia patients (Mental Capacity Act 2005) has been explained in detail.
Finally, gaps in this literature have been explained.
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Chapter 3: Research Methodology
3.1 Introduction
This particular chapter of this whole study is mainly based on different strategies and
methodologies, which are adapted in this research process. It is best described as the hypotheses
and philosophy, which is adapted in this research along with the proper justification for their use.
This particular chapter also illustrates those approaches, which have been applied for this
research and performing justification by applying this approach. This particular part also
includes various evaluation and explanation about this research design and innovative strategies,
which are involved in this research methodology. Those issues related to ethics, which have been
experienced during the performance of the research, is also included in this analysis. It also
includes the time which has been spent during the whole process of research is also given in this
part.
3.2 Methodology Selection
Byman bases the appropriate methodology, which has been applied in this study, on the methods
of Social research. It is stated in this context that analysis based on secondary data is a far better
method for conducting of research. In his methodology based on social research the focus is
particularly kept on demographic area. The methodology is that of secondary that does not
include any primary resource in relation to the process of the research taken place here.
3.3 Research Philosophy
In today’s world, which is full of extremist thoughts, the objectivism based research
philosophy is developed. This includes the opinion of either conservative or liberal perspective.
However, it is considered that the objectivism theory is totally an approach of different thinking.
This method neither includes the extremity related to being liberal nor includes being
conservative in its approach. Smith (2015, p.30) agreed that it is rather points out the researcher
for thinking in a different perspective related to thinking independent which excludes influences
from different political and religious sources. This theory puts strong significance on philosophy-
based emphasis and not on any hypothesis. This theory puts strong significance on philosophy-
based emphasis and not on any hypothesis. The significance of research methodology is very
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significant. The philosophy incorporated here includes the positivism philosophy along with the
realistic approach.
Figure 3: Research Philosophy
(Source: Smith, 2015, p.31)
Thus this research philosophy will allow the researchers a scope for analysis depending upon
their individual ideas.
3.4 Approach of the research
The approach of inductive research is based on the ultimate interference, which is drawn from
collection of research data and observation. This approach based on the approach of inductive
analysis is the study of data and a tendency for drawing a similarity among those data.
Panneerselvam (2014, p.44) stated that the explanation of similarity is depending on different
hypothesis which has been included in this study for satisfying of final objectives related to the
study.
Figure 4: Research Approach
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(Source: Marais, 2016, p.31)
In this approach the deductive approach for research has been applied. Marais and Pienaar-
Marais (2016, p.32) opined that this is because the study of previous reports and works which are
related to addressing those researches oriented questions. In the deductive approach, it is
beneficial for justifying the hypothesis, which is applied in this research, and it will also provide
a scope for conclusion to the researchers after extensive secondary data analysis. The research
a[p[roach implemented in this section includes that of the deductive since this process is very apt
for this particular research that includes the secondary methodology and data collection as well.
3.5 Research Design
A descriptive structure of research-based design is applied for this research. The process of
descriptive design is explained in this context. This includes various discussion of the occurrence
of a definite situation for the research of a particular region. This particular method is in relation
with the methodology as proposed by bryman for social research. This is emphasised in
secondary research. This method helps in taking observations and statistical data calculation.
Figure 5: Research Design
(Source: Flick, 2015, p.43)
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3.6 Data collection methods
The collection method, which is applied in this research, is both primary and secondary. The
primary method includes usage of personal interviews and online for attaining the required
objectives. However, there is certain unreliability for answering in a random way by some
people. According to Mackey and Gass (2015, p.21) this makes data analysis more inappropriate
and in most primary analysis sample sizes which are taken is not correct and thus leading to
biased results. There should be variety in population and bigger sample size when the questions
and objectives are focused in this research. This will be wrong if not conducted efficiently.
Figure 6: Data Collection Methods
(Source: Mackey and Gass, 2015, p.22)
Thus secondary data collection method is considered much more appropriate in this respect. This
is based on extensive study and previous research papers. There are several criteria which is
followed for carrying out of this research. This includes inclusion and exclusion of criteria based
on journal. The inclusion criteria of those journals are as follows-
 The journal should be well known.
 The journal should be recent and of current edition.
 There should be relevant research papers.
 The journal should include research papers of last five years.
 Finally it should have higher factors regarding impact.
The process of exclusion includes-
 The research papers which are much older are not included.
 The journals which are not of current editions are excluded
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 Several vague papers which are out of topic are avoided.
The data collected for this research includes the secondary method. The sources of the data
include the journals, books and authentic internet websites to cite examples and support the
research project and study.
3.7 Data collection tools
Tools for data collection are those instruments which may be surveys or interviews or may be
research or journal based papers which are used as reference for this research. Gast and Ledford
(2014, p.55) agreed that this tools that are taken for this research are journals and research
papers. This are founded after searching through search engines and specialized sites of
governments for access of government archives for records of dementia. Apart from this, the data
and information regarding government plans and legislations is obtained from British
government law officials.
Those search engines used are -
 Google
 Yahoo
 Google Scholar
Apart from this the database of WHO was accessed and articles from different newspapers were
also assessed for gaining knowledge about dementia situations in UK. The necessary of authentic
websites are very crucial which are being employed while collecting the data that is secondary in
relation to the topic of the research project. These are the most trusted ones and apt for the
research project.
3.8 Data analysis techniques
The data, which is collected, is analyzed in the secondary data analysis methods. Here the data is
obtained from reports and journals and is based on obtaining of research questions for answering.
The answers so obtained are applied for drawing of conclusion and recommendation related to
research. The data, which is gathered here by secondary research methods, involves the statistical
data and are obtained from databases and journals.
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Figure 6: Data analysis techniques
(Source: Flick, 2015, p.64)
Thus it is found that quantitative data is obtained from secondary research. Thus the researches
based on quantitative data are performed by using different analysis tools for statistics such as
ANOVA and Chi square test. Flick (2015, p.63) suggested that this is done for elimination of
errors and getting correct result. This is also included nominal data and ordinal data or the ratio
of data. This analysis will give the p-value of the result and conclusion is drawn accordingly.
Several computer-based tools like SPSS are applied for gathering data from those analyses.
In the analysis of the data and the employment of the technique includes the quantitative
analysisis since this is very apt and appropriate with the methodology in relation to the research
project.
3.9 Ethical consideration
The ethics is applied in every stage, which is to be conducted. The ethical guidelines helps a
person for performing research only by application of ethical methods and not following of
different unethical practices for obtaining better results.
The ethical consideration that is to be maintained in this process includes the prior permission of
the participants and the use of data revealed by the person for the case of research paper as
mentioned. This also includes the identification and acknowledgement of original possessor of
those data while it is performed. Proper permission is to be gained in this respect. All the data
that is collected is protected under Data protection Act 1998. Therefore, there is no chance of the
occurrence of the ethical issues while carrying out the research project.
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3.10 Summary
This particular chapter is about different methods which are supposed to be used for conduction
of business in this research. It provides details about the bryman methodology and the research
philosophy and research design, which will be applied for carrying of research-based
methodology, based Bryman. This part gives detailed methods of secondary collection of data,
which will be applied, and criteria that is to be followed. Various descriptions about the analysis
of data are carried out for obtaining conclusion. This part also discusses about ethical guidance,
which is maintained for carrying out of research by researcher. Throughout then research project
all the related aspects of methodology are propagated appropriately that is commendable and
significant for the research project.
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Chapter 4: Data Analysis
4.1 Introduction
According to the given research it can be seen that in the family the aged population is suffering
from dementia which means that the individual is affected from a memory loss, problem of
judgment. They are mainly take care by the family members who are going to experience the
circumstances like burden in terms of emotions, physique, socially and financially those are in to
the care giving role. For examine the impact we have to check both the psychological and
physical effects while a family is giving a care with the respective illness, discussing numerous
approaches to the caretaker so that there is no negative impact in their role, also describing the
factors to measure the rate of the nature and immensity of the effect. Also from the study we can
see that the characteristics like socio demographic characters, resource of the caretaker, and the
personal characteristics which helps to reform the caretaker’s experience and reduce the burden
and help to accompany the role. If the caretaker is not guided properly then there can be change
of the behavior like getting angry and frustrated with the parents and also it can lead to violence
to the individual affected with dementia.
4.2 Thematic analysis
Through the secondary research method, the data are collected and research is being incorporated
that includes no research. This has further enabled the less chance of being ethically charged by
any the resources of the data. The thematic analysis is very much apt with the qualitative
methodology and data analysis. The statistical analysis is another technique of data analysis
employed for the sake of research in this section. The appropriateness is very necessary to carry
out the data collection that will be in support of the research. Mitigating the limitations is also
helped out by the data analysis technique. The qualititative data collection process counts for the
statistical and thematic analysis.
4.3 Summary
Research from the ‘International Longevity Centre’ tells us that the dementia is only the part of
getting aged instead of disease which mainly justifies to the withdrawal of the family. From the
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research we can also see that 85% of caretakers in UK feels isolated socially due to the their
responsibilities of taking the care the individual affected with dementia. This will only help the
caretakers if they get a financial support from the other family members. Living condition can
vary as they have to save money for the future requirement if the health of the patient
deteriorates. The cost of the treatment is very high as the patient has to undergo on brain
scanning, testing for cognitive impairment.
After the collection of the data, the analysis of the data is very necessary that gives the reader a
clear view of the outcome of the research otherwise the validity or the value of the research will
be diminished. In this research, the thematic analysis is carried out of the data collected which is
very appropriate for the project research.
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Chapter 5: Conclusion and Recommendations
5.1 Conclusion
From the overall research it is been that the most of the caretakers become socially isolated as
they have taken the full responsibilities for the individual who is suffering from the dementia.
The caretaker gets out of touch from their friends and families as they had to look after the
individual for 24 hours and also the do not want the family and friends to know the illness about
the respective individual. As the caretaker is fully involved in taking care of the individual who
are affected with the dementia, they lose their own goals to achieve in their life. Sometimes the
caretakers feels guilty as their other friends and family members does not give their support to
the caretaker rather they try to achieve their own goals and demands. It strengthens the
relationship between the caretakers and affected individual, as the caretakers is there to take care
of them every day. But many caretakers consider it as great responsibilities to take care of their
loved ones, as sacrificed their social lives to take care of them. The caretakers make their
responsibilities as more priority over their own personal time, holidays and their romantic lives.
From the study we can get that both mental and physical status of the care takers in the family is
very poor. Stress and frustration are the common factors for the caretakers, who are taking care
of the individual affected with dementia. It is limited to understand the dementia and there is
little hope for the care takers as how will they manage when the situation gets deteriorated. Many
caretakers does not think about the future circumstances, they only think of caring the dementia
patients at presents. In case for larger family there is sense for losing their loved and closed ones
which isolates themselves in emotional terms. Their physical and mental health also gets
deteriorated due to the result of frustration, strain and stress. It makes the caretakers exhausted in
energy terms. Despite of all the burdens the caretaker has to face due to the responsibilities they
have taken to take care of the dementia patient, they felt happy that they can able to spent time
with their closed ones and some also felt satisfied that they can able to give their best possible
effort for their loved ones.
5.2 Recommendations
The first thing that needs to be highlighted in context of dementia is strategies for taking good
care of the patient in residential care environment. These patients are suggested to be shifted to
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assisted living residences and nursing homes. Many good organizations provide quick and direct
supervision of health care experts. The patient’s family is suggested to adopt themselves to the
fact that the patient needs special care that cannot be completely provided at home so assisted
living residences are necessary. As far as the residential care homes are concerned, it is the duty
of the organizations to uplift their service aiming to provide the best possible care. Proper
training and hiring of staffs are recommended on the part of residential care companies. The care
units are suggested to create online portal to guide in emergencies. This online portal may also
contain assistance for the staffs and some AI chat bots can help them take decision during
emergencies. The residential care units must look after proper diet of the patients. The patient
must be provided with nutritional foods that will help activating brain cells and should be
prohibited from taking liquors.
The staffs must have healthy relationships with the victims and they need to be very friendly as
dementia patients are very sensitive as well as confused because of acute memory loss. The pain
management is also a field that needs to be looked upon. Tailor pain management techniques can
be deployed whenever necessary to distress the residents.
Social engagement of the residents is quite required. There should be various celebrations and
gathering. The units must plan the daily activity schedules for these patients. The choices and
requirements of the residents are also to be under consideration while planning activities. A nice
dementia care unit will assess each patient individually and then devise strategies to make their
stay homely and comfortable.
If the patient’s family doesn’t shift them to residential care unit and keeps them at home a few
things are recommended. The patient will have a tendency to fall, so the family needs to keep an
eye on the patient. However, it does not mean that the person will not be allowed to move. It
should be taken into consideration that the patient needs to be allowed to move freely because if
they are forced to stay still in a single place it will cause psychological problems to the patient.
5.3 Areas to study further
This research will help the people who want to know information about the illness dementia. As
from the given data analysis they can able to study the behavior and the motives of the caretaker
for taking responsibilities to take care of the individual who is affected with dementia. The
people can able to know the lifestyle of the caretaker. The data analysis is done very thoroughly
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to know how the caretakers is facing like stress, frustration while taking care of the individual
affected with the dementia. The people who wants to research of dementia, have to research
about the symptoms of the disease and also have to know the roles and behaviors of the
caretaker.
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Reference List:
Car, L.T., El-Khatib, M., Perneczky, R., Papachristou, N., Atun, R., Rudan, I., Car, J., Vincent,
C. and Majeed, A., (2017). Prioritizing problems in and solutions to homecare safety of people
with dementia: supporting carers, streamlining care. BMC geriatrics, 17(1), p.26.
Connolly, S., Gillespie, P., O’Shea, E., Cahill, S. and Pierce, M., (2014). Estimating the
economic and social costs of dementia in Ireland. Dementia, 13(1), pp.5-22.
de Vugt, M.E. and Verhey, F.R., (2013). The impact of early dementia diagnosis and
intervention on informal caregivers. Progress in Neurobiology, 110, pp.54-62.
Erol, R., Brooker, D. and Peel, E., (2016). The impact of dementia on women internationally: An
integrative review. Health Care for Women International, 37(12), pp.1320-1341.
Farina, N., Page, T.E., Daley, S., Brown, A., Bowling, A., Basset, T., Livingston, G., Knapp, M.,
Murray, J. and Banerjee, S., (2017). Factors associated with the quality of life of family carers of
people with dementia: A systematic review. Alzheimer's & Dementia.
Flick, U., (2015). Introducing research methodology: A beginner's guide to doing a research
project. Berlin: Sage.
Gardiner, C., Brereton, L., Frey, R., Wilkinson-Meyers, L. and Gott, M., (2014). Exploring the
financial impact of caring for family members receiving palliative and end-of-life care: a
systematic review of the literature. Palliative medicine, 28(5), pp.375-390.
Gast, D.L. and Ledford, J.R., (2014). Single case research methodology: Applications in special
education and behavioral sciences. Abingdon: Routledge.
Harper, S., (2014). Economic and social implications of aging societies. Science, 346(6209),
pp.587-591.
Hutchinson, K., Roberts, C., Kurrle, S. and Daly, M., (2016). The emotional well-being of young
people having a parent with younger onset dementia. Dementia, 15(4), pp.609-628.
Jones, C., Edwards, R.T. and Hounsome, B., (2014). Qualitative exploration of the suitability of
capability based instruments to measure quality of life in family carers of people with dementia.
ISRN family medicine, 2014.
Knapp, M., Comas-Herrera, A., Wittenberg, R., Hu, B., King, D., Rehill, A. and Adelaja, B.,
(2014). Scenarios of dementia care: what are the impacts on cost and quality of life?.
27

Kupeli, N., Leavey, G., Harrington, J., Lord, K., King, M., Nazareth, I., Moore, K., Sampson,
E.L. and Jones, L., (2016). What are the barriers to care integration for those at the advanced
stages of dementia living in care homes in the UK? Health care professional perspective.
Dementia, p.1471301216636302.
Larkin, M. and Milne, A., (2014). Carers and empowerment in the UK: a critical reflection.
Social Policy and Society, 13(01), pp.25-38.
Mackey, A. and Gass, S.M., (2015). Second language research: Methodology and design.
Routledge.
Marais, H.C. and Pienaar-Marais, M., (2016), May. Analysis of Research Methodology in
Business and Management Studies as Reflected in the ECRM 2015 Proceedings. In ECRM2016-
Proceedings of the 15th European Conference on Research Methodology for Business
Management": ECRM2016 (p. 167). Academic Conferences and publishing limited.
Maresova, P., Mohelská, H., Dolejs, J. and Kuca, K., (2015). Socio-economic aspects of
Alzheimer's disease. Current Alzheimer Research, 12(9), pp.903-911.
Milligan, C. and Thomas, C.J., (2016). Dementia and the social model of disability: does
responsibility to adjust lie with society rather than people with dementia?. Signpost, 21(3), pp.5-
16.
Mockford, C., (2015). A review of family carers' experiences of hospital discharge for people
with dementia and the rationale for involving service users in health research. Journal of
Healthcare Leadership, 7, pp.21-28.
Nikmat, A.W., Hawthorne, G. and Al-Mashoor, S.H., (2015). The comparison of quality of life
among people with mild dementia in nursing home and home care—a preliminary report.
Dementia, 14(1), pp.114-125.
Panneerselvam, R., (2014). Research methodology. PHI Learning Pvt. Ltd..
Papastavrou, E., Andreou, P., Middleton, N., Tsangari, H. and Papacostas, S., (2015). Dementia
caregiver burden association with community participation aspect of social capital. Journal of
advanced nursing, 71(12), pp.2898-2910.
Silverman, D. ed., (2016). Qualitative research. Sage.
Smith, J.A. ed., (2015). Qualitative psychology: A practical guide to research methods. Sage.
Tolhurst, E., Bhattacharyya, S. and Kingston, P., (2014). Young onset dementia: The impact of
emergent age-based factors upon personhood. Dementia, 13(2), pp.193-206.
28

van Baal, P.H., Hoogendoorn, M. and Fischer, A., (2016). Preventing dementia by promoting
physical activity and the long-term impact on health and social care expenditures. Preventive
medicine, 85, pp.78-83.
Vernooij-Dassen, M. and Moniz-Cook, E., (2014). Raising the standard of applied dementia care
research: addressing the implementation error.
Werner, P., Savva, G.M., Maidment, I., Thyrian, J.R. and Fox, C., (2016). Dementia:
Introduction, Epidemiology and Economic Impact. In Mental Health and Older People (pp. 197-
209). Springer International Publishing.
Wimo, A., Ballard, C., Brayne, C., Gauthier, S., Handels, R., Jones, R.W., Jonsson, L.,
Khachaturian, A.S. and Kramberger, M., (2014). Health economic evaluation of treatments for
Alzheimer′ s disease: impact of new diagnostic criteria. Journal of internal medicine, 275(3),
pp.304-316.
Wimo, A., Jönsson, L., Bond, J., Prince, M., Winblad, B. and International, A.D., (2013). The
worldwide economic impact of dementia 2010. Alzheimer's & Dementia, 9(1), pp.1-11.
29