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      Effectiveness of an Internet Intervention for Family Caregivers of People with Dementia: Results of a Randomized Controlled Trial

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          Abstract

          Background

          The World Health Organization stresses the importance of accessible and (cost)effective caregiver support, given the expected increase in the number of people with dementia and the detrimental impact on the mental health of family caregivers.

          Methods

          This study assessed the effectiveness of the Internet intervention ‘Mastery over Dementia’. In a RCT, 251 caregivers, of whom six were lost at baseline, were randomly assigned to two groups. Caregivers in the experimental group (N = 149) were compared to caregivers who received a minimal intervention consisting of e-bulletins (N = 96). Outcomes were symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (Hospital Anxiety and Depression Scale: HADS-A). All data were collected via the Internet, and an intention-to-treat analysis was carried out.

          Results

          Almost all caregivers were spouses or children (in-law). They were predominantly female and lived with the care recipient in the same household. Age of the caregivers varied from 26 to 87 years. Level of education varied from primary school to university, with almost half of them holding a bachelor’s degree or higher. Regression analyses showed that caregivers in the experimental group showed significantly lower symptoms of depression (p = .034) and anxiety (p = .007) post intervention after adjustment for baseline differences in the primary outcome scores and the functional status of the patients with dementia. Effect sizes were moderate for symptoms of anxiety (.48) and small for depressive symptoms (.26).

          Conclusions

          The Internet course ‘Mastery over Dementia’ offers an effective treatment for family caregivers of people with dementia reducing symptoms of depression and anxiety. The results of this study justify further development of Internet interventions for family caregivers of people with dementia and suggest that such interventions are promising for keeping support for family caregivers accessible and affordable. The findings are even more promising because future generations of family caregivers will be more familiar with the Internet.

          Trial Registration

          Dutch Trial Register NTR-2051 www.trialregister.nl/trialreg/admin/rctview.asp?TC=2051

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          Most cited references16

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          Persuasive System Design Does Matter: A Systematic Review of Adherence to Web-Based Interventions

          Background Although web-based interventions for promoting health and health-related behavior can be effective, poor adherence is a common issue that needs to be addressed. Technology as a means to communicate the content in web-based interventions has been neglected in research. Indeed, technology is often seen as a black-box, a mere tool that has no effect or value and serves only as a vehicle to deliver intervention content. In this paper we examine technology from a holistic perspective. We see it as a vital and inseparable aspect of web-based interventions to help explain and understand adherence. Objective This study aims to review the literature on web-based health interventions to investigate whether intervention characteristics and persuasive design affect adherence to a web-based intervention. Methods We conducted a systematic review of studies into web-based health interventions. Per intervention, intervention characteristics, persuasive technology elements and adherence were coded. We performed a multiple regression analysis to investigate whether these variables could predict adherence. Results We included 101 articles on 83 interventions. The typical web-based intervention is meant to be used once a week, is modular in set-up, is updated once a week, lasts for 10 weeks, includes interaction with the system and a counselor and peers on the web, includes some persuasive technology elements, and about 50% of the participants adhere to the intervention. Regarding persuasive technology, we see that primary task support elements are most commonly employed (mean 2.9 out of a possible 7.0). Dialogue support and social support are less commonly employed (mean 1.5 and 1.2 out of a possible 7.0, respectively). When comparing the interventions of the different health care areas, we find significant differences in intended usage (p = .004), setup (p < .001), updates (p < .001), frequency of interaction with a counselor (p < .001), the system (p = .003) and peers (p = .017), duration (F = 6.068, p = .004), adherence (F = 4.833, p = .010) and the number of primary task support elements (F = 5.631, p = .005). Our final regression model explained 55% of the variance in adherence. In this model, a RCT study as opposed to an observational study, increased interaction with a counselor, more frequent intended usage, more frequent updates and more extensive employment of dialogue support significantly predicted better adherence. Conclusions Using intervention characteristics and persuasive technology elements, a substantial amount of variance in adherence can be explained. Although there are differences between health care areas on intervention characteristics, health care area per se does not predict adherence. Rather, the differences in technology and interaction predict adherence. The results of this study can be used to make an informed decision about how to design a web-based intervention to which patients are more likely to adhere.
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            Family caregivers of people with dementia

            Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
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              Dropout from Internet-based treatment for psychological disorders.

              The purpose of this review was to present an in-depth analysis of literature identifying the extent of dropout from Internet-based treatment programmes for psychological disorders, and literature exploring the variables associated with dropout from such programmes. A comprehensive literature search was conducted on PSYCHINFO and PUBMED with the keywords: dropouts, drop out, dropout, dropping out, attrition, premature termination, termination, non-compliance, treatment, intervention, and program, each in combination with the key words Internet and web. A total of 19 studies published between 1990 and April 2009 and focusing on dropout from Internet-based treatment programmes involving minimal therapist contact were identified and included in the review. Dropout ranged from 2 to 83% and a weighted average of 31% of the participants dropped out of treatment. A range of variables have been examined for their association with dropout from Internet-based treatment programmes for psychological disorders. Despite the numerous variables explored, evidence on any specific variables that may make an individual more likely to drop out of Internet-based treatment is currently limited. This review highlights the need for more rigorous and theoretically guided research exploring the variables associated with dropping out of Internet-based treatment for psychological disorders.
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                Author and article information

                Contributors
                Role: Academic Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                13 February 2015
                2015
                : 10
                : 2
                : e0116622
                Affiliations
                [1 ]Dutch Alzheimer’s Society, Department Scientific Research, Amersfoort, The Netherlands
                [2 ]The Pennsylvania State University, Department of Human Development and Family Studies, University Park, Pennsylvania, United States of America
                [3 ]Gerontology Institute, University College of Health Science, Jönköping, Sweden
                [4 ]VU University, Department of Clinical Psychology, EMGO+, Amsterdam, The Netherlands
                [5 ]Netherlands Institute of Mental Health and Addiction (Trimbos-institute), Program on Aging, Utrecht, The Netherlands
                [6 ]University of Queensland, School of Psychology, Brisbane, Australia
                The National Institute for Health Innovation, NEW ZEALAND
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: SZ PC AMP. Performed the experiments: MB RGZ. Analyzed the data: MB. Wrote the paper: MB SZ PC AMP.

                Article
                PONE-D-14-12462
                10.1371/journal.pone.0116622
                4334515
                25679228
                891ea92c-5513-455a-bd18-cbd553cdc278
                Copyright @ 2015

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited

                History
                : 15 May 2014
                : 5 December 2014
                Page count
                Figures: 1, Tables: 4, Pages: 11
                Funding
                This study was funded by Alzheimer Nederland (Dutch Alzheimer’s Society), Geriant and the VU University. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article

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