Research Project Methodology On Understanding Dementia Essay.

Explain Research Project Methodology.

The research is on the topic of analyzing awareness about Dementia for a selected population.

The aim of the research is to do detailed research on the cause of dementia and determine the implication and perception of the disease in UK. It will collect data on the prevalence of dementia in UK and research on the perception of illness among citizens of UK. The research will be conducted by the round of questionnaires which will give an idea on how to create awareness about the disease in public.

The research methodology is dependent on the qualitative source of data collected from about 150 citizens of UK. It will be based on randomized sampling technique to gather information from people regarding the perception of Dementia among the people. The survey will be conducted by questionnaire forms, online response and personal interview from college students, offices goers and customers coming in selected restaurants of UK. The detail on the specific question of the survey will be discussed in the research report section. The initial phase of research will investigate relevant sources to get detail on the cause and prevalence of dementia worldwide. The primary and secondary source of information will further help in developing the research on the topic of awareness of dementia. It will give an idea of the severity and burden of disease. Further inquiry about dementia awareness through a series of questionnaires will evaluate people's perception of the disease.

This survey will help in the formation of result for the research. The result of the survey will be presented in the form of graphs and tables. It will assist in concluding what needs to be done in the future and the detail on programs that will help to manage and understand the symptoms and cause of dementia. It will be helpful in minimizing the burden of the disease in UK.

Any research needs to be done in compliance with the code of ethic and best research practices. I had to respect individual participant’s autonomy, and I could not force anyone for the survey. In the case of my survey, I had to adhere to ethical issues of confidentiality and informed consent for the survey. One particular problem that I faced was convincing people to give a response to the survey. Many were reluctant and did not wish to take part in the survey. It was a hard task to explain them the implication and usefulness of my research. I also had to take permission from restaurant owners before I could carry out my survey on the customers coming in the restaurant. Some part of the data was also collected from college students to know their view. For this getting the permission from University staff was a complicated issue. I wanted my survey to be of a high standard whose result will be credible and serve the purpose of my research. It was descriptive and evaluative research to know the level of awareness people have about dementia. I made sure that detail on the topic was investigated, and the proper response rate was generated by the survey. But getting high response rate was also a problem for me.

Detailed Research on Dementia

The qualitative research method was based on face-to-face interview and taking the response from questionnaire forms and online response. The face-to-face interview was conducted in Colleges and restaurants, and online survey was conducted in offices. All the employees of specific office were forwarded the online survey questionnaires, and they had to give their response within a particular time. I reviewed some literature articles to identify existing practice of conducting investigations. The questionnaires were clear and had an interpretable scoring system. It had the psychometric property of reliability by the accurate flow of question and its consistency with the research topic (Gale et al. 2013). It had some open-ended and some closed ended questions. It utilized non-randomized sampling method for collecting information through a survey (Yanow and Schwartz-Shea 2015). It was a purposive sampling which targeted specific groups of people in UK and included those members in the survey. I wanted to take large samples to get better results but due to time constraints, I had to take a small sample of 150 people to make data analysis easier. I chose three age groups of people for my survey to get the perception about dementia in all ages.

Dementia is a condition in which brain cell stops working leading to cognitive declines such as a problem in memory, language, and thinking. Alzheimer's disease is also related to dementia. It is a neurodegenerative disease with about 47.5 million people suffering from dementia worldwide. The incidence of dementia is expected to rise to about 76 million people by 2030. Mostly older people are affected by it, and Alzheimer's disease is the cause of more than 60% of dementia. The current cost of dementia to the worldwide health care system is about 604 million dollar. It is necessary to research about the role of screening and detection to improve care for dementia. One such article reviewed the value of screening for cognitive impairment. Recent studies on dementia have challenged previous thinking about the screening for cognitive impairment. The priorities of health care have changed, and health care policies have been modified to establish annual wellness visit which will detect cognitive impairment in the target population. For reestablishing screening methods, the Alzheimer’s Foundation of America and the Alzheimer's Drug Discovery Foundation has organized a workshop to review evidence for screening implementation and evaluating the effect of timely dementia detection for health care redesigning. It considered benefits, harms, and influence of health care screening on health care quality. The Foundation developed recommendations for making national policies for early detection. It will be an appropriate step for improving clinical care and ensuring proactive, patient-centered management of dementia (Borson et al. 2013).

Aim of the research

            One literature study was based on identifying effective interventions which will improve the quality of care for patients with dementia at home. For this they used inclusion criteria like randomized controlled trials, searching science database and peer-reviewed journal till 2012 and evaluating strategies for care of dementia patients and participant above 65 years of age was taken. They identified many studies which they could include for their purpose of the study. The study suggested that psycho-educational programs frequently assess intervention and multidimensional intervention produced the most effective result. The study finally concluded that because of the vast variety of interventions, evaluating the effectiveness of the intervention is difficult. The study suggested that cognitive rehabilitation is beneficial during early stages of the disease. The study was limited by sample heterogeneity and lack of clarity in the description (Zabalegui et al. 2014).

 One article demonstrated the level of cognitive impairment in early-stage dementia. The awareness of individual related to memory, daily activities and socio-emotional functioning declined after an increase of severity. The study assessed 101 individuals with early stage dementia and they completed the neuropsychological test and analyzed their moods and quality of life. Great discrepancies were found in daily life activities, memory, and socio-emotional functioning. It was found that level of disparities did not change over time. It was found that their daily life activities declined, but anxiety level and quality of life remained stable (Clare et al. 2012).

There is a significant gap in understanding of dementia among people. This article studied the role of television, visual media and disability studies on raising awareness about the disease. They thought of implementing Living well with dementia video which will feature people with dementia and show their interview where they will explain how they manage their condition and what it means to live well with the condition. This form of raising awareness by visual media was critical. It showed that displaying real-life experiences was crucial for making people aware of the disease. The patients in the videos discussed their experience of diagnosis, adjustment in lifestyle, the level of support from families and involvement in social activities. The video was disseminated by the most modern form of visual aid which is YouTube. They also analyzed the impact of understanding of dementia through questionnaires. It concluded that personal stories are a useful way of raising awareness and improving those health conditions that has stigma or disability associated with it (Heward et al. 2015).

Ethical Issues Faced

This section analyzed the worldwide programs for creating awareness of the disease and what lessons can be learned from these programs. Dementia is a global health problem. The prevalence of the disease is higher in Latin-America and Asia. The government of different countries has introduced dementia plan to improve the quality of care. It described the goals of dementia plan for Europe and gave detail on Brazilian situation. The shared goals of different programs were reducing stigma by raising awareness about the disease, increasing the rate of correct diagnosis and arranging for educational programs for family and health care providers. The European dementia plan proposed on establishing more reference centers for evaluation of diagnosis of dementia. They concluded that integrated care is a challenge in most countries. They also recommended identifying barriers to the implementation of such programs by studying European plans (Engedal and Laks 2016).

The review of different literature gave valuable insight into the burden of health services for maintaining dementia and developing an approach for implementation of awareness programs for dementia. Some evaluated the value of implementing screening methods for improving the quality the quality of life of such patients, while some focused on identifying a specific intervention that will help in better management of the disease. The study on patients with early dementia revealed how dementia had an effect on their daily life activity and professional growth. One article gave details on the role of visual media in dissemination of information related to the awareness of the disease. Another article gave an idea about the different kind of plans existing worldwide to manage the conditions of dementia. It was focused and studying previous intervention programs and identifying the barrier that would result in the implementation of awareness programs.

Some of the article reviewed for my research was extremely helpful in carrying out my research. The role of television and another visual aid was a very informative article to study. It was very useful for framing my research as it gave an idea of what kind of videos programs for awareness can have a mass reach among the audience. I feel the European plan on intervention was also a useful work to study. In the future, I will have to arrange awareness programs related to dementia; then I could review the plans of a different country and rectify mistakes for implementation of a successful program. The personal experience of dementia was also a useful article as it helped in framing the questions for my survey.

Results of the survey

The purpose of conducting the survey in citizens of UK was to investigate the level of knowledge of people about the disease. The sample size for my study was 150 people coming from different fields like students (for the survey in colleges), work professional (the study was done in office) and common citizens (for the survey in restaurants). The intention of taking this diverse group was to get data from all age groups of people. The survey had some open-ended, and some closed ended questions to investigate people’s response.

The different questions for the survey were as follows:

Age and male of respondents (choice was given)

Professional specialization/students (choice)

Do you know what dementia is? (option of yes or no)

Is it a normal part of aging? (yes or no)

Is there any care for dementia or not? (yes or no)

Are you or any family member suffers from dementia? (give brief detail)

Do you have experience of personal caring for such patients? (yes or no)

Are you aware of the symptoms or risk factors of dementia? (yes or no, if yes then what risk)

Would you like to know about the ways of managing people with dementia? (yes or no)

How do you think awareness can be created in mass public? (give your view)

Out of 150 respondents for my survey, 66 % were male and 34% female. The college students were in the age group of 20-35 years; office goers consisted of people between age 30-60 years and consumers in restaurants were in the age group of 20-60 years. When asked about the knowledge of dementia, only 55% were aware of the condition of dementia.

Figure 1: Percentage of people aware about the condition of dementia

Many students and professionals thought that dementia was a normal part of aging. About 60% respondents thought it was a normal part of aging while 40% new the cause of dementia. The whole response of citizens of UK is summarized in the table below.

Response to questions	Is there any cure for dementia	Do anyone suffers from dementia	Experience of personal care for patients with dementia	Symptoms and risk factors of dementia	Interest in learning management of dementia
Yes	70%	65%	47%	45%	75%
No	30%	35%	53%	55%	25%

 The majority of people thought that treatment exists for dementia. Those who knew about the condition had the knowledge about the disease because they had someone in the family (like father or grandfather or ancestors) or they were suffering from the disease. Those who had a history of dementia in family revealed that they knew about personal care. But still, only 47 % had this view. When enquired about the risk factors for dementia, a variety of answers were given. The majority of people about 70% thought that people are at risk due to family history of the disease. 20% felt that history of mental illness is the risk factor for dementia. The actual risk factor awareness was low. Only 10 % of respondents believed that smoking and obesity increase the risk of the disease. The last question regarding ways of creating awareness gave a variety of answer like using social media platforms, arranging for programs, making specific policies to manage the disease, dissemination of information by distributing pamphlets and creating videos on popular video sites.

Effective Interventions to Improve Quality of Care for Dementia Patients

The overall finding of the survey report on UK citizens revealed that there is a minimum level of knowledge and awareness about dementia. Only 30% of the population knows that there is no cure for dementia. Many regarded that since it is a neurodegenerative disease, it will have a cure for the disease. But the reality is that treatment depends on the cause of disease, but progressive dementia does not have any treatment methods that will stop the progression of the disease. Medications are there just only to improve symptoms temporarily. So the only option available is reducing the risk factors and implementing lifestyle changes. To prevent the manifestation of the disease, clarity about risk factor is essential. However, survey report revealed that there was great confusion about the risk factors. Some felt that dementia was a normal part of aging which is incorrect. Although there are ways to reduce the risk factors, many were of the view that there was no way to decrease the risk factors. 

My project was dependent on the design of questionnaires for conducting the survey. The questions in the study had to be specific as it would be the framework for my research. All information related to the questionnaires will only be used in developing my research and coming to a conclusion (Prince et al. 2013). The qualitative method of conducting my research relied on survey reports collected from citizens of UK coming from different walks of life. The survey was an important part of my research. Though initially, I had to investigate previous research on the awareness and interventions for dementia, my research gave valuable insight into the future course of actions that needs to be taken for managing dementia. It became evident from taking the view from the respondents like how they would like to create awareness of the disease to the public.

The result of my survey report revealed that there is a serious lack of knowledge about the disease in people of UK. It is a growing health concern worldwide, and ways of preventing the disease and managing the disease are essential for reducing the socio-economic burden associated with the condition. Therefore the primary purpose of my report was to investigate the level of awareness about the disease in common public. This will help in knowing the level of intervention required for prevention and management of dementia. The survey report revealed that very few who knew about the disease only had the information because they were themselves suffering from dementia or they had family members with the disease. There was severe deficit among respondents regarding the area of assessment for the disease such as lifestyle changes and ways of reducing risk factors. This research gave me the direction to further develop this project and determine what feature in the awareness programs and methods of dissemination of information to reduce the severity of the disease.

 It is highly recommended that people know about the primary risk factors and ways of preventing dementia. Dealing with dementia effectively is an essential part of care. The risk factors for dementia are common to those for cardiovascular disease. So through the arrangement of awareness programs in specific targeted population, it is necessary to educate people about the reducing progression of the disease by quitting smoking, minimizing blood pressure cholesterol and blood sugar (Urakami 2016). People should also be educated on implementing lifestyle changes and restricting diet to control the disease. The awareness programs should also give detail on behavioral management as it is associated with aggressiveness, wandering tendencies and poor eating and sleeping habits. Adequate counseling should be given to such patient to reduce speech impairment and to indulge them in activities that keep their mind active. 

Reference

Borson, S, Frank, L, Bayley, PJ, Boustani, M, Dean, M, Lin, PJ, McCarten, JR, Morris, J., Salmon, DP, Schmitt, FA and Stefanacci, RG, 2013. Improving dementia care: the role of screening and detection of cognitive impairment. Alzheimer's & Dementia, 9(2), pp. 151-159.

Clare, L, Nelis, SM, Martyr, A, Whitaker, CJ, Marková, IS., Roth, I, Woods, RT and Morris, RG, 2012. Longitudinal trajectories of awareness in early-stage dementia. Alzheimer Disease & Associated Disorders, 26(2), pp. 140-147.

Engedal, K and Laks, J, 2016. Towards a Brazilian dementia plan? Lessons to be learned from Europe. Dementia & Neuropsychologia, 10(2), pp. 74-78.

Gale, NK, Heath, G, Cameron, E, Rashid, S and Redwood, S, 2013. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC medical research methodology, 13(1), p. 117.

Heward, M, Palfreman-Kay, J and Innes, A, 2015. In their words: How television and visual media can raise awareness of dementia and other health conditions that carry stigma, including disabilities. The Journal of Popular Television, 3(2), pp. 229-242.

Prince, M, Bryce, R, Albanese, E, Wimo, A, Ribeiro, W and Ferri, CP, 2013. The global prevalence of dementia: a systematic review and metaanalysis. Alzheimer's & Dementia, 9(1), pp. 63-75.

Urakami, K, 2016. [Prevention of dementia]. Nihon rinsho. Japanese journal of clinical medicine, 74(3), pp. 395-398.

Yanow, D and Schwartz-Shea, P, 2015. Interpretation and method: Empirical research methods and the interpretive turn. Routledge.

Zabalegui, A, Hamers, JP, Karlsson, S, Leino-Kilpi, H, Renom-Guiteras, A, Saks, K, Soto, M, Sutcliffe, C and Cabrera, E, 2014. Best practices interventions to improve quality of care of people with dementia living at home. Patient education and counseling, 95(2), pp.175-184