ReviewMultivariate models of subjective caregiver burden in dementia: A systematic review
Introduction
Alzheimer's disease and related disorders, like vascular dementia, affect approximately 30–40% of the population aged 80 or older (RIVM, 2010). The majority of dementia patients are cared for at home by family members, mainly spouses and adult children. Providing care for a dementia patient over a longer period of time is associated with emotional and physical health problems. Research performed by Netherlands Institute for Health Services Research Nivel (Peeters et al., 2007, Peeters et al., 2010) in the Netherlands revealed that the prevalence of high levels of burden in informal caregivers of dementia patients is 20%. These caregivers feel so heavily burdened that they are at risk for health problems. Another 58% run the risk of emotional distress as a result of caregiving.
The impact of dementia on the caregiver is frequently conceptualized in terms of caregiver burden. The burden concept has been the subject of research for several decades, distinguishing between objective aspects of burden, that is time spent on care and support, and subjective aspects of burden. Subjective caregiver burden is a complex and multidimensional construct, linked to caregivers’ psychological and physical well-being (Zarit et al., 1986). In the literature subjective burden is therefore related to other psychological concepts such as mood disorders, e.g. depression and anxiety, or caregiver quality of life. Conceptual differences in the definition of subjective burden lead to a diversity of measurement approaches and consequently to the development and use of different measurement instruments.
Patient determinants of caregiver burden that are mentioned in the literature include cognitive function disorders, loss of autonomy and the related need of support in daily activities. However, most important are the neuropsychiatric symptoms accompanying dementia, like depression, agitation and apathy. Coping with behavioral problems has been reported to be one of the most stressful aspects of caregiving (Christie and Wood, 1988, Coen et al., 1997, Gaugler et al., 2000, Black and Almeida, 2004, Meiland et al., 2005, Allegri et al., 2006). Among the most heavily burdened caregivers, 86% of the experienced problems is connected to the disease-related behavioral changes in patients (Peeters et al., 2007). Caregivers vary widely in how they adapt to the demands of caregiving. Their characteristics make them more, or less, fit to deal with the challenge of caregiving and therefore also determine their susceptibility to stress, and burden (Pot et al., 1998, De Vugt et al., 2004, Helmes et al., 2005). Finally, the relationship between patient and caregiver can play a decisive role.
Several models of burden, describing the interaction of both patient and caregiver determinants, are presented in the literature. For example, Lazarus and Folkman (1984) provided a conceptual model for understanding the caregiver stress process, which was used in further empirical research into caregivers’ adaptability by Haley et al. (1987). Pearlin's et al. (1990) stress process framework focuses on contextual variables and distinguishes between stressors that are directly related to the caregiving role (e.g. care recipient behavioral problems), and indirectly related sources of stress (e.g. financial problems). Since Lazarus and Folkman (1984), a basic principle of these stress models is the assumption that an emotional event does not automatically provoke stress, but that it depends on the individual appraisal of the event, and is therefore also mediated by personal, illness-related, social and material factors. Insight into the multiple determinants of caregiver burden has both scientific and clinical relevance: It may contribute to theory development by the construction of more comprehensive and valid theoretical models, as well as to clinical practice, by providing a rationale for the development of specific interventions to reduce caregiver burden. We therefore drew up an inventory of the existing determinants of subjective burden models described in the literature and we systematically analyzed the determinants included in these models.
The central research question was:
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Which patient and caregiver characteristics are significant determinants of subjective caregiver burden or burden-related concepts like caregiver mental health or depression in the different models?
Section snippets
Search strategy and selection criteria
An extensive search was performed of the literature on models of caregiver burden up to December 2013, utilizing the resources Medline (PubMed), PsycInfo and EMbase. The search strategy consisted of a combination of search items: burden, distress, stress, strain, overload, well-being, AND caregiver, family, spouse, informal, relative, home, AND psychogeriatrics, geriatric psychiatry, dementia, behavior, neuropsychiatric symptoms, OR theoretical, concept, predictors, prognostics, model, scale,
Sample
From the original search in Medline (PubMed), PsycInfo and EMbase, 767 publications were selected as possible relevant studies based on their title. Subsequently, based on the abstracts, 638 publications were excluded, and, based on their main text, 129 were evaluated on the inclusion criteria. Finally, 56 publications met all inclusion criteria and were included in the review. 73 publications did not meet the inclusion criteria and were therefore excluded (Fig. 1).
Analysis
We categorized the included patient and caregiver determinant variables of the selected multivariate models. We described the design and the study sample and checked whether the models were theory based. We also categorized the included studies based on the outcome variables in the model, that is burden and burden-related concepts like (diminished) mental health or depression. Furthermore, for each category of determinant variables, we analyzed the percentage of studies in which significant
Results
In about 30% of the studies under review, the composition of the model was based on the Lazarus and Folkman (1984) stress-appraisal-coping model, the Poulshock and Deimling (1984) two-dimensional model of psychosocial morbidity, Haley's (1979, 1987) stress and coping model, or Pearlin's et al. (1990) stress process framework (Table 1, Table 2). All described models included two or more patient determinants such as: (1) behavioral problems or psychiatric symptoms, (2) related (lack of)
Discussion
We searched the literature for determinant models of caregiver burden and consequences of burden such as caregiver mental health or depression. We selected combined models that include both patient and caregiver variables and we investigated whether patient and caregiver characteristics were predictive of burden. Our first conclusion is that only a minority of the traced determinant models are clearly based on a theoretical framework. In several studies, the composition of the model was clearly
Conclusion
It may be concluded from this review that patient's behavioral problems or mood disorders are consistently reported as important determinants of caregiver burden, depression and mental health. Especially for burden, most studies show that behavioral problems are more significant than cognitive disorders or lack of self-care. Caregiver resources, for example personality traits, coping styles, and competences, are also strong determinants, and may be considered mediators between the impact of
Acknowledgements
This study was funded by a grant from the Netherlands Organization for Health Research and Development (ZonMw) (www.zonmw.nl), which is a national organization that promotes quality and innovation in the field of health research and health care, initiating and fostering new developments. The majority of ZonMw's commissions come from the Ministry of Health, Welfare and Sport (VWS). The Foundation for the Advancement of Scientific Research in Nursing Homes [Stg. Wetenschaps Bevordering
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