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

BSR/NIA/NIH, Bethesda, MD 20892-9205, USA.
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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    • "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.
    07/2015; 2015:720483. DOI:10.1155/2015/720483
    • "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.
    Applied Psychology Health and Well-Being 06/2015; 7(2). DOI:10.1111/aphw.12046 · 1.75 Impact Factor
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    • "Caring for a person with dementia impacts on the physical and mental health and well-being of family carers (Ory et al. 1999, Connell et al. 2001, Pinquart & S€ orensen 2003, Bunn et al. 2012). In the UK, government policy has highlighted the need to improve the lives of family carers (HM Government 2008, DH 2009, Scottish Government 2010) and current guidance recommends that family carers of people with dementia should have access to a range of psychosocial and practical support (NICE 2006, SIGN 2006). "
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    ABSTRACT: Specialist nurses are one way of providing support for family carers of people with dementia, but relatively little is known about what these roles achieve, or if they are more effective than roles that do not require a clinical qualification. The aim of this review was to synthesise the literature on the scope and effectiveness of specialist nurses, known as Admiral Nurses, and set this evidence in the context of other community-based initiatives to support family carers of people with dementia. We undertook a systematic review of the literature relating to the scope and effectiveness of Admiral Nurses and a review of reviews of interventions to support the family carers of people with dementia. To identify studies, we searched electronic databases, undertook lateral searches and contacted experts. Searches were undertaken in November 2012. Results are reported narratively with key themes relating to Admiral Nurses identified using thematic synthesis. We included 33 items relating to Admiral Nurses (10 classified as research) and 11 reviews evaluating community-based support for carers of people with dementia. There has been little work to evaluate specific interventions provided by Admiral Nurses, but three overarching thematic categories were identified: (i) relational support, (ii) co-ordinating and personalising support and (iii) challenges and threats to the provision of services by Admiral Nurses. There was an absence of clearly articulated goals and service delivery was subject to needs of the host organisation and the local area. The reviews of community-based support for carers of people with dementia included 155 studies but, in general, evidence that interventions reduced caregiver depression or burden was weak, although psychosocial and educational interventions may reduce depression in carers. Community support for carers of people with dementia, such as that provided by Admiral Nurses, is valued by family carers, but the impact of such initiatives is not clearly established. © 2015 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.
    Health & Social Care in the Community 02/2015; DOI:10.1111/hsc.12189 · 1.15 Impact Factor
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