Around the world, family members and other informal caregivers serve as the primary line of care for close relatives living with Alzheimer’s disease (Vellone et al., 2008). Extant caregiver literature demonstrates that in the United States, an estimated 8.9 million family caregivers provide assistance to a relative aged 50 and older with Alzheimer’s disease (AD) or a related dementia (Gaugler et al., 2008), and that 70 percent of these caregivers are women (Akpiner 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% of their care (Elliot et al., 2010). A sizeable proportion of the family caregivers consist of children whose own parent has AD (Werner et al., 2012).
A thread of existing literature demonstrates that the amount of time that primary caregivers spend providing informal care to their relatives with AD and other forms of dementia ranges from 69 to 117 hours per week (Elliot et al., 2010), and that the stress and burden that accompanies caring for vulnerable family members experiencing the slow progressive deterioration of AD can have adverse physiological, financial, psychological and emotional outcomes on the caregiver (Gaugler et al., 2008), leading to caregiver burden (Black et al., 2010). Caregiver burden, which is widespread 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 the care-giving experience” (p. 481). Caregivers of persons with AD have demonstrated the highest depression scores and a sudden exacerbation of physical health problems compared to other caregivers in the general population, in large part due to the extremely debilitating and long-lasting effect of the disease, which is known to affect victims for up to 20 years or longer after it has been diagnosed (Black et al., 2010). Compared with other caregivers, the type of care provided by family members and other nonprofessional caregivers of persons with AD is more physically, psychologically and emotionally draining and more time-consuming, not mentioning that it takes a heavier toll on work and family life (Wilks & Croom, 2008).
In their review of caregiver literature, Holle et al (2009) acknowledge that not only is AD a stigmatized disease surrounded by influences of ageism, but patients and caregivers alike often deny the symptoms of the disease, experience challenges in accepting the diagnosis, and respond to the disease with anxiety, social withdrawal and depression. Patients and their caregivers demonstrate an elaborate lack of disease specific knowledge and of critical information on regional support and counseling services, not mentioning that general practitioners and nurses also demonstrate “…a tendency of tabooing cognitive impairments and have difficulties in telling bad news – especially disclosing a diagnosis of dementia” (Holle et al., 2009 p. 2). Furthermore, as postulated by these authors, a cynical and unconstructive attitude towards the potential benefits of AD drug therapies and the indistinct evidence concerning non-pharmaceutical treatment and social support options as well as vague referral ways to specialist psychiatric services contribute further to stigmatization and increase in caregiver burden.
Although the caregiver burden experienced by AD caregivers has been well documented in the literature (Wilks & Croom, 2008), there exists little research to document the extent of caregiver burden in adult children whose parents have Alzheimer’s disease. As has been demonstrated in the literature, over 70 percent of individuals with AD receive primary care in home settings (Elliot et al., 2010), implying that they interact with their children on daily basis. In most instances, these children serve as direct caregivers to their ailing parents without the necessary mechanisms, coping strategies and social networks that could assist them deal with the challenges involved in caregiver burden (Werner et al., 2012). At the societal level, research has demonstrated that most individuals with AD are stigmatized and this stigma is extended to the immediate family members (Holle et al., 2009). Yet, 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. The Major objective of the proposed research, therefore, will be to unite these two streams of research to determine the relationship between caregiver burden and social stigma for adult children whose parents have AD.
The proposed study will also attempt to add another important emphasis by specifically evaluating the constructs of financial burden, physical exhaustion and sleep deprivation and how these constructs affect the quality of care provided by adult children of parents with AD. A stream of extant literature (e.g., Gaugler et al 2008; Karlawish et al., 2008; Vellone et al., 2008) has attempted to analyze how these constructs influence caregiver burden and the quality of care provided to patients of AD, but only a few studies have undertaken risk and resilience assessments specifically targeting immediate family members of patients with AD. Consequently, it would be the underlying objective of the proposed study to assess how these constructs affect the quality of care provided by adult children of parents with AD, and how this in effect influences patient’s behavior.
Lack of knowledge in the mentioned critical areas continue to hamper care-giving efforts for persons with AD in spite of the fact that majority of these people get their primary care from immediate family members. Additionally, it can be argued that the gaps in knowledge have significantly contributed to the proliferation of adverse physical, emotional and psychological outcomes being experienced by adult children of parents with AD as a direct consequence of caregiver burden. In social stigma, for instance, the effect of stigma on caregiver burden among immediate family members caring for a parent with AD is yet to undergo comprehensive theoretical and empirical testing in spite of the fact that general research in the domain of mental illness has suggested that caregiver’s perception of stigma is positively correlated with 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 go a long way in informing strategies and intervention measures that could be adopted by these children to ensure they are free of caregiver stigma, hence developing the capacity to provide a fulfilling level of care to their parents while actively minimizing instances of caregiver burden.
Equally, specific knowledge about how adult children of parents with AD are affected by the constructs of financial burden, physical exhaustion and sleep deprivation in their duty of care will go a long way in the reduction of caregiver burden for these children and also enhance the quality of care given to parents. The ageing of parents in many American homes has substantially increased the number of patients with AD and other forms of Dementia, hence it is only imperative for immediate members of the family to be granted with the knowledge to provide quality care to their ailing parents as they are a central and integral component of the management of these patients (Elliot et al., 2010; Vellone et al., 2008).
Purpose of the Study
Flowing from the above, the purpose of the proposed study is to conduct a caregiver burden study with adult children whose parents have Alzheimer’s disease; specifically, to examine the relationship between caregiver burden and social stigma, and also evaluate how the variables of financial burden, physical exhaustion and sleep deprivation affect the adult children of parents with AD as they go along providing care. The researchers will also be interested in evaluating how these variables, specifically physical exhaustion and sleep deprivation, affect patient’s behavior. The justification for undertaking this study is premised on the fact that more than 70 percent of AD victims 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). Consequently, it is only imperative to undertake comprehensive quantitative research on caregiver burden in adult children whose parents have AD not only to equip them with the relevant coping skills and positive physical, emotional and health outcomes, but also to facilitate quality provision of care to the ailing parents.
Akpiner, B., Kucokguciu, O., & Yener, G. (2011). Effects of gender on burden among caregivers of Alzheimer’s patients. Journal of Nursing Scholarship, 43(3), 248-254.
Bilotta, C., Bergamaschini, L., Arienti, R., Spreafico, S., & Vergani, C. (2010). Caregiver burden as a short-term predictor of weight loss in older outpatients suffering from mild to moderate Alzheimer’s disease: A three months follow-up study. Aging & Mental Health, 14(4), 481-488.
Black, S.E., Gauthier, S., Dalziel, W., Keren, R., Correia, J., Hew, H., & Binder, C. (2010). Canadian Alzheimer’s disease caregiver survey: Baby-boomer caregivers and burden of care. International Journal of Geriatric Psychiatry, 25(8), 807-813.
Elliot, A.F., Burgio, L.D., & DeCoster, J. (2010). Enhancing caregiver health: Findings from the resources for enhancing Alzheimer’s caregiver. Journal of the American Geriatrics Society, 58(1), 30-37.
Gaugler, J.E., Roth, D.L., Haley, W.E., & Mittelman, M.S. (2008). Can counseling and support reduce burden and depressive symptoms in caregivers of people with Alzheimer’s disease during the transition to institutionalization? Results from the New York University caregiver intervention study. Journal of the American Geriatrics Society, 56(3), 421-428.
Holle, R., Grabel, E., Ruckdaschel, S., Wunder, S., Mehlig, H., Marx, P…Lauterberg, J. (2009). Dementia care initiative in primary practice-study protocol of a cluster randomized trial on dementia management in a general practice setting. BMC Health Services Research, 9, 91-101.
Karlawish, J.H.T., Casarett, D.J., James, B.D., Tenhave, T., Clark, C.M., & Asch, D.A. (2008). Why would caregivers not want to treat their relative’s Alzheimer’s disease? Journal of the American Geriatrics Society, 56(1), 30-37.
Vellone, E., Piras, G., Talluci, C., & Cohen, M.Z. (2008). Quality of life of people with Alzheimer’s disease. Journal of Advanced Nursing, 61(2), 222-231.
Werner, P., Mittelman, M.S., Goldstein, D., & Heinik, J. (2012). Family stigma and caregiver burden in Alzheimer’s disease. The Gerontologist, 52(1), 89-97.
Wilks, S.E., & Croom, B. (2008). Perceived stress and resilience in Alzheimer’s disease caregivers: Testing moderation models of social support. Aging & Mental Health, 12(3), 357-365.