Early Onset Dementia: Caregivers and Stress While

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.

Inclusion and Exclusion Criteria

When conducting this key word research on the designated database the exclusion criteria involved any research that was conducted before 2005. Also excluded from the research were articles which focused on cases of dementia in the elderly population: this research study seeks to use strictly findings of early onset dementia, even though there is a paucity of material out there. Furthermore, the research includes all studies that were conducted all over the world, as long as they were from the last eight years. Given the fact that there's been little research conducted on this very subject, there was really no choice but to open the study up to overseas research.

Literature Review

Impact of Early Onset Dementia on Caregivers: a review (Vliet, Bakker, Koopmans, et al., 2010)

Vliet and colleagues examined the unmet needs of EOD patients and their caregivers during the various stages of patients during the course of dementia.

This is a longitudinal observational study which used a qualitative design to explore the needs of 215 YOD patients and their caregivers. Assessments which consisted of interviews and questionnaires were completed over a two-year period with patients and caregivers. These findings demonstrated that both the person with YOD and the caregiver faced several problems during the care process, including lengthy diagnosis time, a lack of suitable services, the strain of commitment to care as opposed to the caregiver's personal future standpoint, and the need for individualised health care services (Kaiser & Panegyres, 2007).

This study examined the psychological impact of YOD of on spouses to those with a diagnosis of YOD. A cross sectional analysis using a questionnaire based on the Zarit Burden Interview and the Beck Depression Index was displaced to 120 YOD spouses. 100 of the targeted caregivers were included in the study. It was concluded that the diagnosis of YOD has a great impact on spouses, considered as worries of dependency, concern and a greater level of depression, particularly in the spouses of those with front temporal lobar degeneration.

The Impact of Early Dementia Diagnosis and Intervention on Informal Caregivers (de Vugt and Verhey, 2013).

The authors acknowledge that one of the overwhelming issues with dementia is the fact that there are few disease-modifying therapies for this condition; this naturally brings up the question as to what the benefit and consequences are of pushing for early dementia diagnoses. "An early diagnosis offers caregivers the opportunity to advance the process of adaptation to the caregiver role. 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.

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

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.

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.