Prevalence and Impact of Caregiving: A Detailed Comparison Between Dementia and Nondementia Caregivers

Department of Psychiatry, University of Pittsburgh, Pittsburgh, Pennsylvania, United States
The Gerontologist (Impact Factor: 3.21). 05/1999; 39(2):177-85. DOI: 10.1093/geront/39.2.177
Source: PubMed


Analyzing data from more than 1,500 family caregivers from the 1996 National Caregiver Survey, this study documents the ways in which dementia care is different from other types of family caregiving. Not only do dementia caregivers spend significantly more hours per week providing care than nondementia caregivers, they also report greater impacts in terms of employment complications, caregiver strain, mental and physical health problems, time for leisure and other family members, and family conflict. Differential impacts remain even after controlling for intensity of caregiving involvement and sociodemographic factors. Study findings suggest the need to tailor programs and services to the unique challenges faced by dementia caregivers.

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Available from: Marcia G Ory, Dec 25, 2015
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    • "900). Additional factors that place spousal dementia caregivers at risk for cognitive decline include their advanced age (dementia caregivers are typically over the age of 60) and the associated increased risk of dementia (Kawas, Gray, Brookmeyer, Fozard, & Zonderman, 2000) as well as additional stress associated with the fact that spouses typically provide significantly more hours of care per week (+35 on average) compared to nonspousal caregivers (e.g., adult children) (Ory et al., 1999). Although numerous studies have suggested that caregiving is stressful and that it is associated with psychological distress and physiological dysregulation, more recent population studies have shown that many caregivers report low levels of stress and reap many benefits from caregiving (for a review, see Roth, Fredman, & Haley, 2015). "
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    ABSTRACT: Purpose of the study: The purpose of this study is to expand our recent work, which showed that spousal dementia caregivers compared to spousal nondementia caregivers experience an accelerated rate of frailty over time, by exploring cognitive health outcomes between dementia and nondementia caregivers. Design and methods: Using 8 biannual waves of the Health and Retirement Study data and performance on the modified Telephone Interview for Cognitive Status, we examined changes in cognitive health among surviving spousal caregivers (N = 1,255) of individuals with dementia (n = 192) and without dementia (n = 1,063), 2 waves prior and 2 waves following the death of the care recipient. Results: Controlling for baseline health and contextual factors (e.g., frailty status, age, education), results revealed that dementia caregivers had significantly greater cognitive decline (p < .01) compared to nondementia caregivers. Relative to 2 waves prior to the death of their spouse, dementia caregivers declined by 1.77 points relative to nondementia caregivers (0.87 points) at the time their spouses' deaths were reported and 1.89 relative to the 1.18 points at the wave following these deaths, respectively. Implications: The findings from this study show that spousal caregivers of persons with dementia experience accelerated cognitive decline themselves compared to nondementia caregivers. These results, along with our previous study findings, suggest that this vulnerable group could benefit from early cognitive screening and psychosocial interventions designed to help dementia caregivers better maintain their cognitive and physical health during and following their intensive caregiving responsibilities.
    Full-text · Article · Nov 2015 · The Gerontologist
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    • "With or without formal support, an ICP will typically transition from supporting instrumental activities of daily living (ADLs) (e.g., finances and shopping) to assisting with basic ADLs (e.g., bathing and dressing) and to providing constant care and supervision [1]. Although the stress and burden associated with caring for a PwD is well documented (e.g., [5] [6] [7] [8] [9]), ICPs may wish to continue caring for as long as possible for reasons that include fulfilling filial duties [10] or continuing their relationships with PwDs [11] [12]. Taken together, there is a need for policies, services, and interventions that can better support and collaborate with ICPs in the care of PwDs [3] [13]. "
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    ABSTRACT: Ambient assisted living (AAL) aims to help older persons "age-in-place" and manage everyday activities using intelligent and pervasive computing technology. AAL research, however, has yet to explore how AAL might support or collaborate with informal care partners (ICPs), such as relatives and friends, who play important roles in the lives and care of persons with dementia (PwDs). In a multiphase codesign process with six (6) ICPs, we envisioned how AAL could be situated to complement their care. We used our codesigned "caregiver interface" artefacts as triggers to facilitate envisioning of AAL support and unpack the situated, idiosyncratic context within which AAL aims to assist. Our findings suggest that AAL should be designed to support ICPs in fashioning "do-it-yourself" solutions that complement tacitly improvised care strategies and enable them to try, observe, and adapt to solutions over time. In this way, an ICP could decide which activities to entrust to AAL support, when (i.e., scheduled or spontaneous) and how a system should provide support (i.e., using personalized prompts based on care experience), and when adaptations to system support are needed (i.e., based alerting patterns and queried reports). Future longitudinal work employing participatory, design-oriented methods with care dyads is encouraged.
    Full-text · Article · Jul 2015
    • "Previous research has shown that providing informal care leads to a reduction of leisure time activities (Ory et al., 1999), and also to an increased risk for mental health problems (Cuijpers, 2005). Informal dementia caregivers engage both in fewer leisure activities overall (Ory et al., 1999) and less diverse leisure activities than non-caregivers (Ho et al., 2014). Informal dementia caregivers have been shown to prioritise caregiving over their own leisure activities. "
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    ABSTRACT: Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving. © 2015 The International Association of Applied Psychology.
    No preview · Article · Jun 2015 · Applied Psychology Health and Well-Being
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