For many years, immediate family members and other informal caregivers have acted as the primary source of care for persons with Alzheimer’s disease (AD). As primary caregivers, families of patients with AD experience enormous stress because the disorder requires intensive supervision of patient behavior and support of daily living, resulting in substantial morbidity not only for the patient but also for the family caregiver (Karlawish et al., 2008; Vellone et al., 2008).
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Indeed, extant caregiver literature demonstrates that family caregivers of persons with AD are often fraught with emotional, psychological, physical and financial burdens that have been linked to negative health effects (Bilotta et al., 2010; Black et al., 2010). Another stream of research reports that caring for persons with AD can be a devastating experience as it attracts social stigma and discriminatory practices (Batsch & Mittelman, 2012), and negatively affects the quality of life of patients and their caregivers (Werner et al., 2012).
The constructs of caregiver burden and social stigma have been well documented in the literature (Werner & Heinik, 2008; Wilks & Croom, 2008). Caregiver burden, which is pervasive among the caregivers of AD patients but often downplayed by health services, has been defined by Bilotta et al (2010) as “…a multidimensional response to physical, psychological, social and financial stressors associated with care-giving experience” (p. 481).
Stigma is described in the 2012 World Alzheimer’s Report as “…an attribute, behavior or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one” (Batsch & Mittelman, 2012 p. 7). Flowing from these definitions, it is evident that family caregivers of persons with AD and other dementias shoulder a particularly heavy burden as the type of care they provide is more physically and emotionally demanding and more time consuming, hence taking a heavier toll on work and family life (Wilks & Broom, 2008). These caregivers also run the risk of being classified by others in an undesirable, misconceived, rejected stereotype as has been illuminated in the literature (Batsch & Mittelman, 2012).
It is estimated that over 70 percent of individuals with AD receive primary care in home settings (Elliot et al., 2010), implying that they interact with their children daily. In most instances, these children serve as direct caregivers to their ailing parents without the necessary mechanisms, coping strategies and social support networks that could assist them to deal with the challenges of caregiver burden (Werner et al., 2012).
At the societal level, consecutive studies have shown that most persons with AD are stigmatized, and this stigma is extended to the immediate family members (Holle et al., 2009). Family caregivers of persons with AD are often ignored by society, prejudiced or even discriminated against due to their direct association with their ailing parents or relatives (Batsch & Mittelman, 2012). Nevertheless, no comprehensive research has attempted to evaluate how such stigmatization affects adult children of parents with AD, and if the social stigma acts as a predictor or consequent of caring for persons with AD. Caregiver burden and social stigma deserve scrutiny and examination to equip adult children of dementia parents with relevant coping skills and to also facilitate the quality provision of care to the ailing parents.
Purpose of the Study
The purpose of the proposed study is to critically explore the relationship between caregiver burden and social stigma for adult children whose parents have AD. With the prevalence of AD on the rise in the United States and Europe, the accumulated level of care provided by adult children whose parents have AD is also set to intensify. The effects of caregiver burden among this group of the population, including financial, social, emotional, and physiological effects, may assume an increasingly compounded trajectory due to rising numbers of care dependents. Findings will assist in the identification of initiatives that could be used by this group of the population to cope with caregiver burden and social stigma associated with caring for parents with AD.
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The proposed study intends to provide evidence-based guidance for the development of initiatives to support adult children whose parents have AD to better deal with the effects of caregiver burden, including but not limited to financial burden, physical exhaustion and sleep deprivation. The study also seeks to provide evidence-based guidelines that could be deployed to assist this group of the population deal with the social stigma originating from their association with ailing parents. These outcomes are intended to not only improve the quality of care provided by adult children of parents with AD but also to enhance the quality of life of these caregivers.
Key Research Questions
The purpose and aims of the proposed research study will be addressed by answering the following key research questions:
- What is the relationship between caregiver burden and social stigma for adult children whose parents have Alzheimer’s disease?
- What are the observed forms of caregiver burden affecting adult children whose parents have Alzheimer’s disease?
- What are the likely causes of stigmatization targeted at these caregivers as they provide care to parents with AD?
Significance of the Problem
Extant caregiver literature demonstrates that more than 70 percent of AD patients receive their primary care from home (Elliot et al., 2010); hence their children play a fundamental role in the provision of care (Werner et al., 2012). With the prevalence rate of AD among the elderly population set to rise in the coming years (Batsch & Mittelman, 2012), family caregivers, including adult children of the patients, are faced with the stark reality of shouldering more burden and of continued exposure to social stigmatization.
Gaps in knowledge on caregiver burden and social stigma for adult children whose parents have AD continue to contribute significantly to the proliferation of adverse physical, emotional, and psychological outcomes among this group of the population. Additionally, the effect of stigma on caregiver burden among immediate family members caring for a parent or relative with AD is yet to undergo comprehensive theoretical, conceptual and empirical testing, despite a stream of research studies in the domain of mental illness literature suggesting that caregiver’s perception of stigma is positively associated with the increased burden (Werner et al., 2012).
In this regard, evaluating the relationship between caregiver burden and social stigma for adult children whose parents have AD will provide strategies, interventions and policy guidelines that could be used to develop their capacity to provide a fulfilling level of care to their parents while actively minimizing instances of caregiver burden.
Review of Literature
Described for the first time over a century ago by Alois Alzheimer in his landmark lecture on the various forms of Dementia, Alzheimer disease (AD) has not only continued to cause substantial morbidity for patients and their caregivers (Bilotta et al., 2010), but it also poses one of the most important challenges for health care systems in the greying societies of – for example – the United States and Europe (Holle et al., 2009). Based on epidemiological prognoses and other hospital data, AD is the most common cause of dementia for people aged over 60 years and is consistently the most frequent but misconceived postmortem diagnosis for those entering a health institution with dementia (Black et al 2010). This section aims to review the current literature on the disease and how it relates to caregiver burden and social stigma.
Brief Statistics on AD
Latest statistics contained in a report released in 2012 by Alzheimer’s Disease International (ADI) show that 36 million persons were living with AD globally in 2010, and the figure is projected to rise to 66 million by 2030 and more than 100 million by 2050 (Batsch & Mittelman, 2012). Many of these people depend on immediate family members for care. In the United States, for instance, an estimated 8.9 million family caregivers assist a relative aged 50 or older with AD or related dementia (Gaugler et al., 2008), and 70 percent of these caregivers are women (Akpinar et al., 2011).
One recently concluded study found that of the estimated 4.5 million elderly Americans exhibiting progressed symptoms of the disease, more than 70 percent live at home where immediate family members and friends provide practically 75 percent of their care (Elliot et al., 2010). AD is the fifth leading cause of total morbidity in the United States and the fourth leading cause of mortality for elderly Americans (Elliot et al., 2010), qualifying it as one of the most well-researched and documented types of dementia in recent years (Batsch & Mittelman, 2012).
Effects of AD
Scholars and care practitioners agree that the devastating effects of AD not only influence the patient but also the family and other informal caregivers who assume the responsibility of providing care to the patient (Karlawish et al., 2008; Vellone et al., 2008). Emerging research has found that family caregivers are fraught with emotional, psychological, physical, and financial burdens, and are known to be at elevated risk of depression due to the devastating effects associated with the disease (Black et al., 2010).
Some of these effects include memory loss that disrupts daily life; challenges in planning or solving problems; difficulty completing familiar tasks at home, at work or leisure; confusion with time or place; trouble understanding visual images and spatial relationships; new problems with words in speaking or writing; misplacing things and losing the ability to retrace steps; decreased or poor judgment; withdrawal from work or social activities; changes in mood and personality (Alzheimer’s Association, 2009). These devastating effects require caregivers to shoulder a particularly heavy burden of care as patients cannot care for themselves. In most instances, the heavy burden of care coupled with a multiplicity of other peripheral factors, including the caregiver’s own work-life and responsibilities, precipitates caregiver burden (Black et al., 2010; Vellone et al., 2008).
Research on caregiver burden is well documented and is attracting continued interest from academics since the number of people with AD in the United States and Europe is set to increase even more than expected, in effect putting a significant burden on healthcare systems and caregivers (Batsch & Mittelman, 2012; Black et al., 2010). Bilotta et al (2010) define caregiver burden as “…a multidimensional response to physical, psychological, social and financial stressors associated with care-giving experience” (p. 481).
In their influential article on the dimensional analysis of caregiver burden, Savundranayagam et al (2011) define caregiver burden as “…a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving” (p. 321). These definitions demonstrate that caregiver burden can be operationalized as a multidimensional construct made up of a multiplicity of variables with the capacity to trigger higher rates of depression and anxiety in caregivers (Elliot et al., 2010), as well as embolden financial burden and the ensuing low quality of life in this group of the population (Vellone et al., 2008).
The majority of previous research studies focusing on caregiver burden have found significant correlations between higher levels of caregiver depression and higher levels of burden and negative behavioral orientation associated with the caregiving role, particularly in a family or spousal caregivers (Batsch & Mittelman, 2012; Gaugler et al., 2008). Elliot et al (2010) report that caregivers “… have been found to report lower self-rated health scores; display fewer health-promoting behaviors; and have higher morbidity and mortality rates, more sleep problems, and high numbers of illness-related symptoms” (p. 30).
Flowing from these assertions, it is evident that caregivers shoulder a heavy burden of care, which may adversely affect their physical, mental, and psychological wellbeing as well as their financial independence and work-related obligations. Additionally, as suggested by Black et al (2010), the physical wellbeing of caregivers is substantially compromised as a function of care burden because the baseline health and wellbeing of caregivers contributes significantly to the prediction of depressive symptoms, anxiety and low quality of life. A stream of current research (e.g., Elliot et al., 2010; Holle et al., 2009; Wilks & Croom, 2008) demonstrates that family caregivers of persons with AD and other forms of dementia continue to record the highest depression scores and the largest increases in depression, as well as an exacerbation of physical health challenges.
Family Caregivers & Burden
It is acknowledged in the literature that immediate family members provide personal care that is integral to assisting disabled older adults to remain in their homes (Gaugler et al., 2008) and that this care is not without its costs particularly in the context and scope of AD (Akpinar et al., 2011). In their research on enhancing caregiver health, Elliot et al (2010) acknowledge that “…the amount of time that primary caregivers (CGs) spend providing informal care to their loved ones with dementia ranges from 69 to 117 hours per week” (p. 30).
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These authors further posit that the stress and burden that accompanies caring for persons experiencing the slow progressive deterioration of AD, along with the associated intellectual impairment, can have adverse physical, mental, and psychological health effects on the family caregiver. As the disabilities and care requirements of the individual with AD increase over time due to the degenerative nature of the disease, the accumulated financial, social, emotional, and physiological effects of family caregiving also intensify (Gaugler et al., 2008).
Emerging research has found that the amount of time family caregivers spend in the caregiving role often leaves little time or resources for them to take part in gainful employment (Karlawish et al., 2008), or even attend to their responsibilities such as health-promoting practices and healthcare needs (Elliot et al., 2010). It has been well documented in the literature that immediate family members serve as the primary source of short and long-term emotional assistance and instrumental service to the AD patient (Gaugler et al., 2008), hence are exposed to a higher burden of care within the context of financial, psychological, mental and physical domains (Bilotta et al., 2010).
Although family caregivers play a fundamental function in maintaining AD patients in the community and preventing or delaying their impending institutionalization, they are nevertheless exposed to physical and psychological stressors due to the nature and scope of care required (Akpinar et al., 2011), hence are more predisposed to mental and emotional strain as well as low quality of life (Vellone et al., 2008).
Extant literature demonstrates that the physical and mental health and well-being of family caregivers, along with other functional variables such as social support and financial resources, has a direct impact on the quality of caregiving and it is a significant consideration in its own right since AD patients require emotional, physical, and fiscal commitment (Holle et al., 2009; Wilks & Croom, 2008). Indeed, as demonstrated by Vellone et al (2008), the consequence of these burdensome activities may negatively impact the physical, psychological and psychosocial dimensions of family caregiving. The consequence of these activities may also jeopardize caregiving efforts and the relationship between the family caregiver and the AD patient, leading to neglect, abuse and low quality of life for the patient as well as the caregiver (Vellone et al., 2008; Wilks & Croom, 2008).
Consequently, the prevention and reduction of the burden of caregiving should be considered a priority to family caregivers of AD patients, since an overpowering burden will not only deteriorate the physical, physiological and mental well-being of the caregiver (Gaugler et al., 2008), but will also cause an increase in the incidence of offensive and negligent behaviors from family caregivers to their relatives (Elliot et al., 2010).
Stigma has been defined in the 2012 World’s Alzheimer’s Report as “…an attribute, behavior or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one” (Batsch & Mittelman, 2012, p. 7).
These authors believe that stigma is to a large extent fuelled by the perceptions people have about the symptoms of AD, including those of considering AD as a normal component of aging, mental or psychological illness, something metaphysical associated with paranormal or spiritual beliefs, witchcraft or foul play, or as an irreparable and irremediable disease of the brain. In a related study, Werner & Heink (2008) acknowledge that stigma associated with various forms of dementia and other mental conditions consists of the perception that individuals with these dementias have objectionable characteristics, leading to a devaluation of these individuals.
Werner & Heink (2008) acknowledge that “…stigma affects not only the person with the mental disorder but also those surrounding the person, including family and professionals” (p. 92). When directed at the patient, stigma causes the individual to be classified by the community in an undesirable, rejected stereotype (Batsch & Mittelman, 2012), and prevents them from acknowledging symptoms and obtaining the help they require (Werner et al., 2012). This orientation substantially limits their quest for successful treatment and management of AD, and also contributes to the isolation of the patients and erosion of their self-esteem and social adjustment (Werner & Heink, 2008).
Emerging research demonstrates that immediate family members providing care to their relatives with AD are exposed to stigma under their association with their sick relatives (Werner & Heink, 2008). As observed by these authors, “…stigma by association may cause fear, low self-esteem, shame, distrust, anger, inability to cope, hopelessness and increased burden for family members” (p. 92). Other studies have found stigmatization and discrimination of family caregivers in social relationships through decreased social contacts with the outside world, assignment of guilt, assignment of shame and avoidance, as well as concealment of the sick relative (Vellone et al., 2008; Werner et al., 2012).
Flowing from this review, it is important to undertake a critical examination of the relationship between caregiver burden and social stigma for family members assisting persons with AD not only to inform policy and practice directions, but also to come up with alternatives that could assist them to cope with the heavy burden of care. More importantly, it is imperative to consider the plight of adult children whose parents have AD because this group of the population acts as direct primary caregivers to their elderly and frail parents (Argyle et al., 2010; Elliot et al., 2010), hence shoulder much of the burden and stigmatization by society (Werner & Heink, 2008). The next section evaluates the study design, participants and sampling, instrumentation, and how data will be analyzed.
Study Design & Variable Description
The proposed study will employ a quantitative research method to critically investigate the relationship between caregiver burden and social stigma for adult children whose parents have AD. Hopkins (2000) acknowledges that a substantial number of quantitative research studies are implicitly concerned with evaluating the correlation between variables of interest, and are either descriptive or experimental. A quantitative research design fits the demands, resources and scope of the proposed study as it is objective, time-independent and context-free in its generalizations and findings (Welford et al., 2012).
The proposed study will utilize a descriptive research design because participants will only be measured once (Jirojwong et al., 2011), and the variables of interest will include caregiver burden (independent variable) and social stigma (dependent variable). The age of participants (adult children) will be used as the controlling variable. A self-administered survey approach will be employed to collect quantitative data among the sampled participants. Extant research demonstrates that a survey approach in the form of a self-administered questionnaire is particularly effective when investigators are essentially interested in descriptive, explanatory, or exploratory evaluation of variables as is the case in the proposed study (Jirojwong et al., 2011).
Population & Sample
Potential participants for the proposed study will comprise adult children of AD patients attending a memory clinic for elderly persons and their families in four selected health and mental institutions within the region. 100 caregivers within this population will be selected using the purposive sampling technique to take part in the study. Purposive sampling is a non-probability sampling technique that samples participants based on their understanding of the topic under study (Jirojwong et al., 2011), thus the justification to use the technique in the proposed study because it promises data that is rich in context. The inclusion criteria for selection will consist of
- being of 18 years of age or older,
- being the primary caregiver of an elderly parent with a diagnosis of probable AD, and
- exhibiting interest to take part in the study.
Underage providers and those extending care to AD relatives other than their parents will be automatically excluded from the study.
Protection of Human Subjects
Potential participants will be approached by the researchers, who will describe the aim of the study and ask for their consent to take part in the study. The study will not involve any deception or debriefing because it’s purely for academic purposes. Participants will be allowed the right to withdraw from the investigation at any given time and for any reason, though the researchers will take time to explain to them the importance of completing and submitting the questionnaire.
The right to confidentiality will also be explicitly explained to the participants, with the guarantee that no personal details will be included in the questionnaire apart from general demographic information. Participants will be assured in writing that the responses included in the questionnaire will be kept in strict confidence and will only be used to fulfill purely academic objectives. Lastly, ethical approval will be sought from the University Ethics Board and the respective administrations of the four health institutions targeted for the study.
Data will be collected from participants attending memory clinics in the four health institutions that provide health care services to patients with Dementia. In the United States and other European nations, caregivers of dementia patients are always encouraged to accompany them to the memory/treatment clinics, with the view to learning about coping strategies and how to provide quality care to patients with AD (Elliot et al., 2010). The practice and care centers across the four health institutions will form the setting for the proposed study. It is imperative to note that the four health institutions will be selected by the researchers at a later date. However, they must be close to each other to facilitate data collection exercises, and to also ensure minimal financial resources are used on transportation.
The main instrument used for data collection will be the questionnaire. The questionnaire, which will be self-administered, will contain items of diverse layouts including multiple-choice items, asking either for a single choice or all that apply; dichotomous responses such as “Yes” and “No”; self-evaluation items, measured on the 5-point Likert-type scale and intended to measure participants’ attitudes and perceptions on caregiver burden and social stigma; and unstructured/open-ended items intended to elicit responses that cannot be captured by closed-ended items. In the development and piloting of the questionnaire, the investigators will rely on the identification of the conceptual domain and the review of extant literature for purposes of guaranteeing the content validity of the survey instrument (Phillips & Starwaski, 2008).
The justifications for using the questionnaire schedule are many and varied (Jirojwong et al., 2011), and include ease of application and adaptability; cost-effectiveness; and ease of undertaking comparative analysis (Phillips & Starwaski, 2008). Additionally, questionnaires allow researchers the liberty to incorporate unstructured items to enquire about new information which may be previously unknown to them or to merely explore new horizons. Lastly, not only do questionnaires have the capacity to attain a high response rate than other methods of data collection, but they are also able to guarantee participant anonymity and confidentiality because the names/physical identities of the sampled participants are of no significance to the study (Phillips & Starwaski, 2008).
Data from the field will first be coded before being entered into SPSS for Windows (Statistical Package for Social Sciences) for cleaning, tabulation, and analysis. Afterward, the SPSS program will be used to run descriptive statistics (means, frequencies, standard deviations, and percentages) to characterize participants and the main variables, which include caregiver burden and social stigma. The scores will be used to test the relationship between caregiver burden and social stigma for adult children whose parents have been diagnosed with AD. Cross-tabulations will be used to draw relationships between variables.
The resultant data will further be harnessed, analyzed, and presented using multiple statistical presentations included in the SPSS program, such as pie charts, bar graphs, and line graphs. Normal text will also be used as one of the means to present findings. The analysis will focus on addressing the relationship between caregiver burden and social stigma for adult children whose parents have Alzheimer’s disease.
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