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.
"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 . Although the stress and burden associated with caring for a PwD is well documented (e.g.,     ), ICPs may wish to continue caring for as long as possible for reasons that include fulfilling filial duties  or continuing their relationships with PwDs  . Taken together, there is a need for policies, services, and interventions that can better support and collaborate with ICPs in the care of PwDs  . "
[Show abstract][Hide abstract] 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. "
"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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