family caregivers; depressive symptoms;
Key words: family caregivers; depressive symptoms; sleep disturbance; dementia Introduction Persons with dementia (PWDs) are cared for by approximately 10 million adult caregivers, two-thirds of whom will suffer from sleep disturbance while caregiving (McCurry, Logsdon, Teri, & Vitiello, 2007). In Taiwan, PWDs were estimated to account for 4.2% of Taiwans total elderly population in 2060 (Taiwan Alzheimers Disease Association, 2012). Most PWDs (85%) live in the community and are cared for by family caregivers (FCGs) (Directorate-General of Budget, Accounting and Statistic, Executive Yuan, Taiwan, 2006). Among the health problems reported by FCGs of PWDs, the most prevalent was sleep disturbance (two-thirds of FCGs had this complaint) (Chiu et al., 2010). Sleep disturbance was also identified as one of the top four health problems among FCGs in Taiwan (Tseng, 2007). Poor caregiver sleep has been linked to lowered immune function, elevated stress hormones, increased risk for cardiovascular disease, and premature mortality (von K?ªanel et al., 2006; von K?ªanel et al., 2010). A review of sleep disturbance in FCGs of PWDs found this problem to be complex and challenging, with insufficient research on the topic (McCurry, Gibbons, Logsdon, Vitiello, & Teri, 2009). In addition to sleep disturbance, FCGs often report feeling depressed. The prevalence of depression in FCGs was estimated to be 24.6% in patients with mild cognitive impairment (Lu et al., 2007) to more than 50% in PWDs (Garcia-Alberca, Lara, & Berthier, 2011). However, little is known about the presence of coexisting symptoms in FCGs of PWDs other than depression. Co-existing symptoms such as depression, fatigue, and sleep disturbance may interfere with FCGs ability to assume and fulfill the caregiving role. In addition, FCGs existing symptoms may worsen during the course of their caregiving activities. Finally, unrelieved symptoms in FCGs may affect their health and quality of life (see review by Fletcher, Dodd, Schumacher, & Miaskowski, 2008). Sleep disturbance among FCGs of PWDs has been correlated with FCGs depressive symptoms (Chiu et al., 2010; McCurry et al., 2009; Tseng, 2007), but understanding this relationship might be enhanced by considering symptoms coexisting with depression, such as fatigue. For example, higher levels of fatigue were correlated with higher levels of depression and sleep disturbance in 103 FCGs of patients with cancer (Cho, Dodd, Lee, Padilla, & Slaughter, 2006). In another study, higher levels of fatigue *Corresponding author. Email: email@example.com 2013 Taylor & Francis Aging & Mental Health, 2014 Vol. 18, No. 1, 92101, https://dx.doi.org/10.1080/13607863.2013.837141 in 67 FCGs of PWDs were correlated with higher levels of depression (Clark, 2002). Finally, FCGs of PWDs reported higher levels of perceived physical fatigue than noncaregivers (Sato, Kanda, Anan, & Watanuki, 2002). Caregiving for PWDs can be stressful; therefore, assessments of FCGs should be based on a theoretical understanding of the stress process of caregiving (Family Caregiver Alliance, 2006). One comprehensive theoretical framework for the stress process is the caregiving and stress-process model (Pearlin, Mullan, Semple, & Skaff, 1990), which includes background factors (demographic, cultural, and life-history influences), primary stressors (objective indicators such as disease severity and PWDs behavioral problems, and subjective indicators such as fatigue caused by overload and distress toward PWDs behavioral problems), secondary stressors (such as role strain and intrapsychic strain), mediators, and stress outcomes. In this model, mediating factors include resources for coping with social, economic, and internal stresses, whereas outcomes include depression, FCGs physical health, and giving up the caregiver role. This model has been successfully used to study FCGs of PWDs (Hilgeman et al., 2009). Therefore, we chose it to guide this study. Based on the caregiving and stress-process model (Pearlin et al., 1990), various outcomes should not necessarily be treated as interchangeable ways to assess the impact of caregiving stress. A more reasonable approach may be to consider the different types and levels of outcomes as interrelated. For example, elements of emotional distress such as depression are likely to surface first, and if they persist, they may eventually be inimical to physical well-being. Therefore, we hypothesized that fatigue resulting from the antecedent stressful caregiving process predicted primary outcomes such as depression. Then fatigue and depressive symptoms would interact with each other and develop synergistic effects to predict sleep disturbance. By exploring the relationships of FCGs sleep disturbance with multilevel stressors, we may discover that a cluster of symptoms and health problems in FCGs of PWDs better reflects the daily experiences of this population, allowing the development of effective interventions. Methods Study design and participants This cross-sectional study was conducted at two teaching hospitals, two local hospitals, and two community longterm care service programs in northern Taiwan. Outpatients of memory disorder clinics underwent a standard comprehensive evaluation at their respective clinics to determine their eligibility for the study. A neurologist of the affiliated hospital evaluated potential participants for dementia diagnosis and severity based on criteria of the Diagnostic and Statistical Manual (DSM)-IV (American Psychiatric Association, 1999) and guidelines of the National Institute of Neurological and Communicative Disorders and the Stroke and Alzheimer Disease and Related Disorders Association (McKhann et al., 1984). Other inclusion criteria for PWDs included (1) speak Mandarin Chinese, Taiwanese, or Hakka dialect, and (2) have a primary or secondary FCG. Exclusion criteria for PWDs included (1) acute illnesses, (2) impaired hearing loss and severe visual problems, and (3) chronic alcohol abuse or use of drugs which could affect functions of the central nervous system. Inclusion criteria for FCGs (1) provide all or most of the assistance to PWD for the past 3 months, or (2) provide secondary care to their relative by supervising a hired care assistant. Co-residency was not required for FCGs. Exclusion criteria for FCGs included (1) documented cognitive or mental disorder, such as severe memory problems or major affective disorders, (2) hearing or visual impairments that were not properly corrected, (3) use of prescription drugs known to impair or enhance attention, e.g., antidepressants, barbiturates, or other depressants, amphetamines, and (4) insufficient command of Chinese, Taiwanese, or Hakka. After all eligible participating FCGPWD dyads read or heard the consent form, they signed it. Context of home care in Taiwan Although most PWDs are cared for by their FCGs, PWDs can receive limited reimbursement from the government for housekeeping and personal care, depending on the severity of their disability (Ministry of the Interior, 2007).
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