Caregiver stress and burden in early onset dementia

Early Onset Dementia: Caregivers and Stress

While much research has been conducted on dementia, particularly the supreme focus upon dementia by the National Institute for Health and Clinical Excellence (NICE), there still is a marked dearth of information regarding early onset dementia (Jefferies & Agrawal, 2009). This is no surprise: dementia is generally viewed as a disease of old age. However, overlooking the significance and implications of Young Onset Dementia are dire. Young Onset Dementia (YOD) is defined affects 2.2% of the population under the age of 65 in the United Kingdom. Yet, there's still reason to believe that this number is actually even higher as 2.2% is simply the sum of the referrals to mental health services; it's more than likely that there are large numbers of undiagnosed members of society with this condition.

Generally, those who are undiagnosed, receive informal caregiving delivered by family-members, organisations such as their church, friends, and neighbours, when they find they are unable to by care for themselves (National Family Caregivers Association, 2002). However, for the clarity of this paper, caregivers will just refer to the spouses of people with YOD. Clinicians who deal with all forms of dementia have often found that caregivers are the "hidden patients" or the "forgotten patients" of this condition as they too are at risk for a host of issues as a result of their stress and burden: depression, stress, social isolation leading to self-medicating their worries with alcohol or other substances (Lane, McKenna, Ryan, et al., 2003). In addition to this, caregivers providing high levels of care are twice as likely to be permanently sick or disabled. Accordingly, 625,000 people have health problems because of these caring responsibilities.

At this time, there is not only a scarcity of awareness in the general medical community, but there is also a lack of relevant services for these individuals -- both those with dementia and those who take care of them. The NICE have acknowledged the impact of dementia on relationship as a central standard of care and more research needs to be conducted (Daniels, Lamson and Hodgson 2007). Moreover, it is imperative that investigators endeavour to heighten our understanding of the lived experience of dementia. Such findings can then be developed into suitable and effective interventions that encourage those with dementia and their relatives, empowering both to live better with the disorder as stipulated by the Department of Health in (2009).

Background, Purpose and Justification of the Study

Dementia is an umbrella term used for a group of symptoms caused by an array of brain disorders. There are several diseases that end in the onset of dementia; however, the most prevalent of these illnesses is Alzheimer's disease. Individuals with (EOD) have different needs from those with late onset dementia (above 65 years). Some of these needs might be the ability to maintain employment during their diagnosis; being responsible for their offspring and responsible to their financial obligations.

Either way, a diagnosis of dementia is a distressing experience. For the person involved, it entails the gradual but unavoidable loss of independence owing to the decline of cognitive and decision- making capabilities, deterioration of physical functions, memory and personal identity. For the caregiver, it entails witnessing the slow loss of the individual whom they have known and cherished their entire lives. As a caregiver, such a process can be truly traumatic, not to mention exhausting. One needs to constantly be planning the care needs for their loved one. EOD patients and careers often are passed on between neurology and psychiatry, and also between elderly care and liaison mental-health services. The responsibility for finding accessible and suitable support is frequently left with the caregivers. This results in preventable postponements, causes unnecessary distress to patients and puts an additional burden on caregivers. Therefore, conducting a study in which caregivers can participate in the exploration and development of support-interventions will provide valuable knowledge which can aid in forming a basis for the planning of different supportive network for both caregivers and (EOD) sufferers.

The inspiration for this research study in EOD began during placement in a mental-health inpatient unit. In addition to witnessing the anguish felt by the patients with EOD and their caregivers, the lack of nursing support was evident. It was well apparent that there needed to be an EOD-focused service which was prominent. An increasing number of authors, researchers and health care professionals have become aware of the need of developing strategies which effectively address the needs of both EOD patients and caregivers.

However, none have examined interventions to meet the needs of both parties and no identified research has used participatory action research as a method. Therefore, future studies which involve both EOD patients and caregivers, are absolutely essential as these studies can explore which services need to be established so as to address this gap of service and knowledge. Understanding these needs is vital in the quest to construct services and enable health professionals or government bodies to strengthen approaches which enhance the quality of life for both caregivers and EOD sufferers. By doing so, a holistic picture of the care needs of an EOD caregiver can be identified and initiatives taken to address those unmet needs. Furthermore, the knowledge from this research can be used to educate health-professionals so that they can foster a better understanding of the most supportive and successful approaches to take.

Formulate a Research Focused Question

The skill of formulating a research question is difficult to learn and at the same time crucial in the endeavour of gathering research and making a decision which is evidence based. Since the author is unskilled in the matter, the Population Intervention Comparison and Outcome framework (PICO) will be applied (Polit and Beck, 2009). The utilization of PICO framework will enable more multifaceted search approaches, produce more detailed search outcomes, and improve conceptual clarity of the problem.

At this time the PICO framework helped to generate the following question: how can participatory action research better explore the need of caregivers who offer care for patients with Early Onset Dementia via participatory action research.

Keywords

Early-onset, Dementia, carers, perspective, participatory action research, family

Electronic Search

An electronic search was carried out on a range of mental health databases. For example, the databases scrutinized were The Summon, Cinhal, Clinical key, Cochrane Library, PubMed and others. The journals that will be looked at will be periodicals like The Gerontologist, Aging and Mental Health, American Journal of Health Behavior, Journal of Health and Social Behavior, Archives of Clinical Neuropsychology, and Neuropsychology.

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.

Themes

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).

Methods

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.

Setting

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.

Procedure

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 of coping methods and problem-solving ideas will be looked at, offering a wealth of possible solutions which is the ultimate goal of the study. The only difficulties of the study will be in the analysis and interpretation.

Budget The budget for the study will be very simple: the questionnaire cost almost nothing to make and the recording equipment for the interviews is already owned by the lab. The only expenses will be the travel and living expenses of the research team: most likely $5,000 to $10,000 per member depending on the length of the study and how many citites are traveled to. Furthermore, if the analysis software is not already owned that will be an additional expense.