Article

Systematic review of information and support interventions for caregivers of people with dementia

Department of Health Sciences, University of York, York, UK.
BMC Geriatrics (Impact Factor: 2). 02/2007; 7(1):18. DOI: 10.1186/1471-2318-7-18
Source: PubMed

ABSTRACT Dementia is an important health and social care problem and is one of the main causes of disability in later life. The number of families affected by dementia will dramatically increase over the next five decades. Despite the implications for health and social care services in the future, the overwhelming majority of care for people with dementia takes place away from health care settings. Providing informal care for someone with dementia can be psychologically, physically and financially expensive and a range of health service interventions aimed at supporting and providing information to these carers has developed to help carers meet these demands. This review examines whether information and support interventions improve the quality of life of people caring for someone with dementia.
A systematic review examining evidence from randomised controlled trials in which technology, individualised or group-based interventions built around the provision of support and/or information were evaluated.
Forty-four studies were included in the review. Controlling for the quality of the evidence, we found statistically significant evidence that group-based supportive interventions impact positively on psychological morbidity. However, whilst the improvement was unlikely to be due to chance, the clinical significance of this finding should be interpreted tentatively, due to the difficulties in interpreting the standardised mean difference as a measure of effect and the complex aetiology of depression. No evidence was found for the effectiveness of any other form of intervention on a range of physical and psychological health outcomes.
There is little evidence that interventions aimed at supporting and/or providing information to carers of people with dementia are uniformly effective. There is a pressing need to ensure that supportive interventions at the development stage are accompanied by good quality randomised evaluations in which outcomes that are important to clinicians and carers are measured.

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    • "In addition, no supportive effect on the caregivers' well-being was observed during the 36 months of follow-up. Well-designed follow-up intervention studies are warranted (Thompson et al., 2007). Psychosocial interventions have been criticized as having low intensity or being provided during too short a period. "
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    ABSTRACT: Early diagnosis, initiation of Alzheimer's disease (AD) therapy and programs that support care of persons with AD at home are recommended. The objective of this study was to assess the effect of early psychosocial intervention on delaying the institutionalization of persons with AD. We also assessed the influence of intervention on AD progression, behavioral symptoms, and health-related quality of life (HRQoL) in persons with AD and caregivers. Kuopio ALSOVA study, a prospective, randomized intervention study with a 3-year follow-up, was carried out at memory clinics. Home-dwelling persons with very mild or mild AD (n = 236) and AD-targeted therapy and their family caregivers (n = 236) were randomized to the intervention or control group (1:2). Psychosocial intervention including education, counseling, and social support was given during the first 2 years (16 days). The primary outcome was the cumulative risk (controlled for death) of institutionalization over 36 months. Secondary outcomes were adjusted mean changes from baseline in disease severity, cognition, daily activities, behavior, and HRQoL for persons with AD; and change in psychological distress, depression, and HRQoL for caregivers. No differences were found in nursing home placement after the 36-month follow-up between intervention and control groups. No beneficial effects of the intervention were found on the secondary outcomes. The psychosocial intervention did not delay nursing home placement in persons with AD and had no effect on patient well-being, disease progression, or AD-related symptoms or caregiver well-being. Instead of automatically providing psychosocial intervention courses, individualized support programs may be more effective. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.
    International Journal of Geriatric Psychiatry 07/2015; DOI:10.1002/gps.4321 · 3.09 Impact Factor
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    • "We selected a combined individual and group-based approach because caregivers and patients have benefited from programs with a group component [13]. For example, groups appear to improve depression in caregivers of patients with dementia [14]. Most effective of all appear to be interventions that combine "
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    ABSTRACT: Within the Veterans Health Administration (VHA), the largest integrated health care system in the US, approximately 8.5 million Veteran patients receive informal care. Despite a need for training, half of VHA caregivers report that they have not received training that they deemed necessary. Rigorous study is needed to identify effective ways of providing caregivers with the skills they need. This paper describes the Helping Invested Families Improve Veterans’ Experience Study (HI-FIVES), an ongoing randomized controlled trial that is evaluating a skills training program designed to support caregivers of cognitively and/or functionally impaired, community-dwelling Veterans who have been referred to receive additional formal home care services. This two-arm randomized controlled trial will enroll a total of 240 caregiver-patient dyads. For caregivers in the HI-FIVES group, weekly individual phone training occurs for 3 weeks, followed by 4 weekly group training sessions, and two additional individual phone training calls. Caregivers in usual care receive information about the VA Caregiver Support Services Program services, including a hotline number. The primary outcomes is the number of days a veteran patient spends at home in the 12 months following randomization (e.g. not in the emergency department, inpatient or nursing home setting). Secondary outcomes include patient VHA health care costs, patient and caregiver satisfaction with VHA health care, and caregiver depressive symptoms. Outcomes from HI-FIVES have the potential to improve our knowledge of how to maximize the ability to maintain patients safely at home for caregivers while preventing poor mental health outcomes among caregivers.
    Contemporary Clinical Trials 07/2014; 38(2). DOI:10.1016/j.cct.2014.05.003 · 1.99 Impact Factor
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    • "Previous reviews (Thompson et al., 2007; Topo, 2009) that have discussed technology supporting the needs of people with dementia and their caregivers only covered literature up to February 2007. In addition, such studies focused more on assistive technologies for patients and formal caregivers (Topo, 2009) or compared technology-based interventions with non-technology-based interventions (Thompson et al., 2007). The rapid growth of older adults using the Internet in the last few years (Zickuhr and Madden, 2012) underlines the importance of investigating Internet interventions as a source of support for this group. "
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    ABSTRACT: Because of the expected increase in the number of dementia patients, the unlikelihood of a cure in the near future, and the rising cost of care, there is an increasing need for effective caregiver interventions. Internet interventions hold considerable promise for meeting the educational and support needs of informal dementia caregivers at reduced costs. The current study aims to provide an overview of the evidence for the effectiveness, feasibility, and quality of Internet interventions for informal caregivers of people with dementia. A systematic literature search of five scientific databases was performed, covering literature published up to 10 January 2013. Twelve studies were identified. The quality of the included studies was assessed according to the Cochrane level of evidence and the criteria list of the Cochrane Back Review Group. The intervention types, dosage, and duration differed widely, as did the methodological quality of the included studies. The overall level of evidence was low. However, the results demonstrate that Internet interventions for informal dementia caregivers can improve various aspects of caregiver well-being, for example, confidence, depression, and self-efficacy, provided they comprise multiple components and are tailored to the individual. Furthermore, caregivers could benefit from interaction with a coach and other caregivers. Internet interventions for informal dementia caregivers may improve caregiver well-being. However, the available supporting evidence lacks methodological quality. More randomized controlled studies assessing interventions performed according to protocol are needed to give stronger statements about the effects of supportive Internet interventions and their most promising elements. Copyright © 2013 John Wiley & Sons, Ltd.
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