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      Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review

      , MB BChir 1 , , BSc (Hons), MSc 1 , , BA, PhD 2 , , MSc, MD, MRCGP 1 , , MSc, PhD, MRCGP 1 , , BSc, MBBS, FRCGP 1 , , BSc, PhD 3 ,   , BSc (Hons), MSc, PhD 1 , 4 ,
      (Reviewer), (Reviewer), (Reviewer), (Reviewer)
      Journal of Medical Internet Research
      JMIR Publications
      dementia, caregivers, internet, review

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          Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support.


          In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia.


          We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools.


          We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain.


          Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.

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          Most cited references67

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          Evaluating Digital Health Interventions: Key Questions and Approaches.

          Digital health interventions have enormous potential as scalable tools to improve health and healthcare delivery by improving effectiveness, efficiency, accessibility, safety, and personalization. Achieving these improvements requires a cumulative knowledge base to inform development and deployment of digital health interventions. However, evaluations of digital health interventions present special challenges. This paper aims to examine these challenges and outline an evaluation strategy in terms of the research questions needed to appraise such interventions. As they are at the intersection of biomedical, behavioral, computing, and engineering research, methods drawn from all of these disciplines are required. Relevant research questions include defining the problem and the likely benefit of the digital health intervention, which in turn requires establishing the likely reach and uptake of the intervention, the causal model describing how the intervention will achieve its intended benefit, key components, and how they interact with one another, and estimating overall benefit in terms of effectiveness, cost effectiveness, and harms. Although RCTs are important for evaluation of effectiveness and cost effectiveness, they are best undertaken only when: (1) the intervention and its delivery package are stable; (2) these can be implemented with high fidelity; and (3) there is a reasonable likelihood that the overall benefits will be clinically meaningful (improved outcomes or equivalent outcomes at lower cost). Broadening the portfolio of research questions and evaluation methods will help with developing the necessary knowledge base to inform decisions on policy, practice, and research.
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            Why caregivers of people with dementia and memory loss don't use services.

            To develop a typography of the characteristics of caregivers of community dwelling people with dementia or memory loss who do not use services and empirically investigate the reasons for service non-use. The findings of a literature review were used to develop a typography of caregivers' non-use of services. This typography was applied to a sample of community-based caregivers. One in three caregivers were using no services and one in four only one service. Despite considerable proportions reporting low levels of life satisfaction and high levels of overload and resentment the main reasons caregivers gave for not using services were that they did not consider they needed the services. Other reasons for service non-use included care recipient reluctance to use services, lack of knowledge of services or being in the process of applying for services. Service availability or affordability were not identified as major impediments to service use. Presence of a physical disability and contact with a social worker were associated with service use. Caregivers of people with dementia incur significant strain and have substantial need for a variety of services. Nevertheless many caregivers were not using support services, mainly because of perceived lack of need or lack of awareness. Better public promotion of services, destigmatising dementia and encouraging referrals from health professionals could help overcome the barriers to service use. Copyright (c) 2005 John Wiley & Sons, Ltd
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              Internet use and well-being in older adults.

              The Internet has become an important social context in the lives of older adults. Extant research has focused on the use of the Internet and how it influences well-being. However, conflicting findings exist. The purpose of the study was to develop an integrative research model in order to determine the nature of the relationships among Internet use, loneliness, social support, life satisfaction, and psychological well-being. Specifically, loneliness and social support were tested as potential mediators that may modify the relationship between Internet use and indicators of well-being. Data from the U.S. Health and Retirement Study (HRS) were used, and the association among Internet use, social support, loneliness, life satisfaction, and psychological well-being was explored. The sample consisted of 5,203 older adults (aged 65 years and older). The results indicated that higher levels of Internet use were significant predictors of higher levels of social support, reduced loneliness, and better life satisfaction and psychological well-being among older adults.

                Author and article information

                J Med Internet Res
                J. Med. Internet Res
                Journal of Medical Internet Research
                JMIR Publications (Toronto, Canada )
                June 2018
                12 June 2018
                : 20
                : 6
                [1] 1 Centre for Ageing Population Studies Research Department of Primary Care and Population Health University College London London United Kingdom
                [2] 2 Research Department of Primary Care and Population Health University College London London United Kingdom
                [3] 3 eHealth Unit Research Department of Primary Care and Population Health University College London London United Kingdom
                [4] 4 Centre for Dementia Palliative Care Research Marie Curie Palliative Care Research Department University College London London United Kingdom
                Author notes
                Corresponding Author: Nathan Davies n.m.davies@ 123456ucl.ac.uk
                ©Jenny Hopwood, Nina Walker, Lorraine McDonagh, Greta Rait, Kate Walters, Stephen Iliffe, Jamie Ross, Nathan Davies. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 12.06.2018.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.


                dementia, caregivers, internet, review


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