Early Onset Dementia: Caregivers Research Proposal

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Caregivers that are better able to adapt to the changes that characterize dementia, feel more competent to care and experience less psychological problems" (de Vugt and Verhey, 2013). Overwhelmingly, the negative aspects of an early diagnosis outweigh the benefits if people are left with diagnosis but no form of support. The evidence points to the fact that caregivers too need multidimensional interventions in order to help better overall caregiver well-being (de Vugt and Verhey, 2013). Thus the study focuses on the urgent need for more research on the most effective caregiver interventions (de Vugt and Verhey, 2013).

"Marital Relationship Quality in Early Stage Dementia: Perspectives from People with Dementia and their Spouses" (Care et al.,2012).

This research study examines the impact on spouses of people with dementa and how they handle the burden of the caregiver role. "This study explored caregiver and PwD perceptions of RQ, identified associated factors, and examined changes over an 18-month period. Participants were 54 couples where one spouse had early-stage dementia and 54 were control couples. RQ was assessed with the Positive Affect Index. Measures of mood, stress, and quality of life (QoL) were also administered" (Care et al., 2012). The caregivers had significantly lower levels of satisfaction and quality of life, leading for the researchers to urge for stronger support mechanisms for them and greater education as to how their burden and responsibilities can be alleviated.

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"Quality of Life and Depression in Carers of Patients with Early Onset Dementia" (Rosness et al., 2010).

Research Proposal on Early Onset Dementia: Caregivers and Assignment

This study sought to determine just how strong the correlation was between the quality of life/level of depression of caregivers and the act of living with a person who has early onset dementia (Rosness et al., 2010). The researchers examined a sample of 49 caregivers and 49 patients with dementia (some which had alzheimers and others which had another type of dementia). Basically, the researchers found that carers of EOD patients had increased symptoms of stress and general life hardship with the increase of age of the caregivers and when patients had a more nuanced insight into their condition (Rosness et al., 2010). Furthermore, increased hardship was also connected with being married, having children and caring for a person who not only had dementia, but another illness as well, such as a comorbid cardiovascular disease (Rosness et al., 2010).

"Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road" (van Vliet et al., 2011).

This research article takes afascinating look at how it can be far more difficult to diagnose and realize EOD when compared to late-onset dementia. This study sought to pinpoint what the obstacles in this successful diagnosis process were and to create a typology for EOD caregivers. The researchers gathered a sample of just under 100 EOD caregivers by using constant comparative analysis and fundamental theory. The interviews were heavily analyzed and the following themes developed such as: " (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of con-rmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis" (van Vliet et al., 2011). The researchers also found that cognitive and behavioral changes in the patient very frequent, making care and daily life even harder for the caregivers (van Vliet et al., 2011). Thus, things like marriage problems, child-rearing problems and work/financial issues were factors which kept arising over and over again (van Vliet et al., 2011). Thus, caregivers of these patients had long and difficult stretches of time before the diagnosis and denial probably played a factor into this difficult period, as denial no doubt contributed to this refusal to seek help (van Vliet et al., 2011). This underscores the necessity for quicker and more sufficient assistance from health-care leaders and other clinicans when supporting the caregivers of patients from this population.

Comparison of Studies

Basically, these studies mimic one another in their results with a high level of consistency. These studies demonstrate that caregivers are under an undue amount of stress and many of them are ill-equpped and ill-prepared for caring for a patient who is has EOD. Many of the symptoms that these caregivers experience are: burnout, depression, isolation, guilt, confusion and anxiety. Many of these symptoms are also exacerbated by the fact that the caretakers are often ill-educated about dementia in general and also because of the caregivers latent or immediate denial about the condition of their loved one.


The overwhelming themes of this research are education of caregivers, support of caregivers and a minimization of the symptoms of depression, anxiety, social isolation etc.

Strength of the Evidence

The findings of the research articles from the study demonstrate consistently that caregivers won't be under such a tremendous and unmanageable stress if they're given two factors: education and support. Over and over the research shows that caregivers experience such aggravated symptoms just because they don't fully understand the condition or how to deal with the condition and also because they feel like they're on their own (and they often are).

Redefined Research Question

How can caregivers of EOD patients best be educated and supported about the facts and nuances of the condition?

Research Design

The research design will be largely a cross-sectional design with an intensive questionnaire as the main method of data collection. "Failing to distinguish between design and method leads to poor evaluation of designs. Equating cross-sectional designs with questionnaires, or case studies with participant observation, means that the designs are often evaluated against the strengths and weaknesses of the method rather than their ability to draw relatively unambiguous conclusions or to select between rival plausible hypotheses" (nyu.edu). Thus, in this case qualitative means of data collection will be used in the most unobtrusive manner possible. This research method does mean that intensive data analysis will have to occur -- of the documents and by using meticulous observations of the patients in a non-experimental manner (nyu.edu).


As already stated, the main method used will be a questionnaire administered to caregivers of a range of psychiatric patients (though primarily dementia ones). This sample will largely include people who handle their caregiver role well and have a high quality of life. The questionnaire will be used to determine what the most overwhelming contributing factors for that are. An interview portion (which will be recorded and transcribed will also follow in order to gather some of the nuances of successful care. This will increase the amount of work for the researchers, but will be well worth it.


The research will occur in geriatric care facilities across the United States: in Chicago, New York, San Diego, Seattle, Cleveland, Detroit and Portland.

Sample The Sample will be collected by visiting geriatric hospitals and reaching out to patients who receive at home care from a family member. The sample will be selected from family members who occupy the caregiver role in a successful manner.

Ethical Considerations

The main ethical considerations revolve around the privacy and confidentiality of all things that the caregivers share. Furthermore, the way in which the caregivers are approached has to be done in the most sensitive manner. Finally, the study needs to be couched and presented in such a way that the caregivers understand that they're being used to explain to others the secrets of their own success for the good and benefit of others. Issues of access might arise in that simply getting access to caregivers might be a problem and the most aggressive and passive outreach methods will have to be used.


The research will be carried out in the simplest fashion: all caregivers who volunteer for the study will complete a simple questionnaire as to their level of satisfaction and quality of life in caring for a dementia patient (spouse). These questionnaires will be evaluated to find the caregivers who have high levels of contentment. Those volunteers will be approached again to continue with this study, completing yet another questionnaire which asks about strategies and techniques for their care of the EOD patient. This will be followed by a tape recorded interview which allows patients to discuss more openly the methods they use.

Data Analysis The entire research team will analyze the data, separately and together. Software will be used to scan for key words. The team will look for repeated themes. The timescale will be two to three months for the entire project, depending on how many cities are visited.

Reliability and Validity

Reliability and validity are extremely important to the study to make sure that data collection and interpretation are accurate reflections of the phenomenon. Various checkpoints and accuracy methods will be used in administering the questionnaires and surveys as well as when scoring them.

The Limitation of Study

The limitations of the study will be very small because the study is designed to speak to such a wide and diverse population. The huge diversity of the population means that a variety… [END OF PREVIEW] . . . READ MORE

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