The Effects of a Special Computer Network on Caregivers of Persons with Alzheimer's Disease Worksite-based internet multimedia program for family caregivers of persons with dementia. Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial. Raising the standard of applied dementia care research: addressing the implementation error Dementia Caregivers’ Responses to 2 Internet-Based Intervention Programs How Can Research Keep Up With eHealth? Ten Strategies for Increasing the Timeliness and Usefulness of eHealth Research User evaluation of the DEMentia-specific Digital Interactive Social Chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and, usefulness Translating Evidence-Based Dementia Caregiving Interventions into Practice: State-of-the-Science and Next Steps.
Caregivers of persons with Alzheimer 's disease ( AD ) are confronted with novel decision-making tasks that leave them at risk for social isolation . Computer Link is a computer network providing information , communication , and decision-support functions for caregivers of persons with AD . One hundred two AD caregivers participated in a r and omized field experiment to evaluate the effects of ComputerLink on confidence in decision making , decision-making skill , and social isolation . During the 1-year study period , AD caregivers averaged two encounters per week with Computer Link for sessions lasting an average of 13 minutes . Access to Computer Link enhanced caregivers'decision-making confidence . Decision-making skill was unaffected . ComputerLink access did not lead to changes in social isolation as measured by st and ard instruments . The decision-support function was used least often . Postings to ComputerLink 's public bulletin board included both information-seeking and supportive messages . These findings are congruent with reports of other community-based interventions for caregivers and consistent with evaluations of computerized decision-support systems PURPOSE Our goal was to evaluate the efficacy of a multimedia support program delivered over the Internet to employed family caregivers of persons with dementia . DESIGN AND METHODS The evaluation of this program involved 299 employed family caregivers participating in a pretest-posttest r and omized clinical trial with a 30-day follow-up and a waitlist control condition . Vali date d instruments include the Center for Epidemiologic Studies -Depression scale , the State-Trait Anxiety Inventory , the Caregiver Strain scale from Benjamin Rose , and Positive Aspects of Caregiving used in the nationwide REACH study . RESULTS Those who viewed Caregiver 's Friend : Dealing with Dementia 30 days postexposure demonstrated significant improvements in depression , anxiety , level and frequency of stress , caregiver strain , self-efficacy , and intention to seek help , as well as perceptions of positive aspects of caregiving . IMPLICATION S Interactive multimedia interventions delivered over the Internet appear to be uniquely suited to provide low-cost , effective , convenient , individually tailored programs that present educational information , cognitive and behavioral skills , and affective learning opportunities . This makes Web-based multimedia a promising avenue for work-life balance programs , employee-assistance providers , and organizations interested in improving family caregiver health and well-being BACKGROUND Few personalized e- interventions are available for informal and professional caregivers of people with dementia . The DEMentia Digital Interactive Social Chart ( DEM-DISC ) is an ICT tool to support customized disease management in dementia . The aim of this study was to improve and evaluate DEM-DISC , its user-friendliness and usefulness and to investigate the future implementation . METHODS A cluster r and omized controlled trial ( RCT ) design was used with measurements at baseline , 6 and 12 months . A total of 73 informal caregivers of people with dementia , supported by 19 r and omized case managers participated in the study . In the intervention group , both carers ( n = 41 ) and case managers ( n = 13 ) could access DEM-DISC during twelve months . The control group , 32 carers and 14 case managers , had no access to DEM-DISC . Semi-structured interviews were conducted with ten stakeholders . RESULTS Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls . A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls . Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly . CONCLUSIONS This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced ( met ) needs of informal carers . This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs . For further implementation of DEM-DISC methods to keep the information up date d is of great importance Current methodology has made popular the pragmatic r and omized trial ( Foster & Little , 2012 ) and has led to an acknowledged growth of high- quality research in the ‘ new generation ’ of psychosocial interventions in dementia care ( Orrell , 2012 ) . However , many trials of psychosocial interventions in dementia lack impact . It is not clear whether this reflects a genuine ineffectiveness , since the methodology used in dementia care research is at present weak in addressing the important distinction between genuine ineffectiveness and an implementation error . Therefore , potentially effective dementia care interventions that may have a positive impact on patient experience can fail to show effectiveness , thereby reducing treatment options and wasting research money . Method ological discussion s about the success and failure of interventions in dementia care within the European INTERDEM group of multi-professional research ers on psychosocial dementia care ( www.interdem.org/ ) led to a critical analysis of the suitability of the current methodology . This has often relied on the Medical Research Council ’s ( MRC ) Framework for complex interventions and its iterations ( Campbell et al. , 2000 ; Craig et al. , 2008 ; Craig & Petticrew , 2013 ) . Foster and Little ( 2012 ) pinpoint an important obstacle to improving clinical practice as the legacy of ‘ simple ’ drug therapy evaluations which are engrained in the design and conduct of the pragmatic trial , a view that can also be extended more generally to the interpretation and conduct of the MRC framework for complex interventions and its method ologies . The advantage of pragmatic trials is their proximity to daily practice in routine health care setting s. This has particular implication s for the design and conduct of psychosocial intervention research in dementia , where the important distinction between poor attention to implementation and genuine ineffectiveness is often overlooked . Furthermore , better attention to the implication s of this proximity in the design and conduct of psychosocial intervention research trials may reduce the need for a separate large-scale implementation study phase in the way that this is currently conceived within the MRC approach to complex interventions ( Craig et al. , 2008 ; Craig & Petticrew , 2013 ) . This is an urgent issue for psychosocial intervention research in dementia care as today 35.6 million people and families worldwide live with dementia ( Prince et al. , 2013 ) , whilst major pharmaceutical advances in prevention and cure remain elusive ( Miller , 2012 ) . The predicted future growth of dementia cases over the next decade will undoubtedly raise the already high costs of care , estimated at US$ 604 billion in 2010 ( Wimo et al. , 2013 ) , in an illness that is most feared people over the age of 55 years ( Le Couteur , Doust , Creasey , & Brayne , 2013 ) , since it can undermine core human capacities result ing in decline in quality of life ( Selkoe , 2012 ) . Although cure for dementia is not available for dementia patients , we are not empty h and ed . Psychosocial intervention research has emerged as today ’s forerunner , given its aim to improve daily practice among professionals who provide support to people and families living with dementia .  Psychosocial interventions in dementia involve interactions between people to improve psychological and social functioning ( Moniz-Cook , Vernooij-Dassen , Woods , & Orrell , 2011 ; Rabins et al. , 2007 ) , such as cognitive stimulation therapy ( Woods , Aguirre , Spector , & Orrell , 2012 ) , occupational therapy ( Graff et al. , 2006 ) and support programmes for family carers ( Vernooij-Dassen , Draskovic , McCleery , & Downs , 2011 ) . This paper outlines the rationale for a paradigm shift in the design and methodology for evaluation of complex interventions in applied dementia care research . We use  psychosocial intervention research as an exemplar of how research ers and their funders may achieve better value for money Purpose : The aim of this study was to examine the impact on dementia caregivers ’ experienced stress and health status of 2 Internet-based intervention programs . Design and methods : Ninety-one dementia caregivers were given the choice of being involved in either an Internet-based chat support group or an Internet-based video conferencing support group . Pre-post outcome measures focused on distress , health status , social support , and service utilization . Results : In contrast to the Chat Group , the Video Group showed significantly greater improvement in mental health status . Also , for the Video Group , improvements in self-efficacy , neuroticism , and social support were associated with lower stress response to coping with the care recipient ’s cognitive impairment and decline in function . Implication s : The results show that , of 2 Internet-based intervention programs for dementia caregivers , the video conferencing intervention program was more effective in improving mental health status and improvement in personal characteristics were associated with lower caregiver stress response Background eHealth interventions appear and change so quickly that they challenge the way we conduct research . By the time a r and omized trial of a new intervention is published , technological improvements and clinical discoveries may make the intervention date d and unappealing . This and the spate of health-related apps and websites may lead consumers , patients , and caregivers to use interventions that lack evidence of efficacy . Objective This paper aims to offer strategies for increasing the speed and usefulness of eHealth research . Methods The paper describes two types of strategies based on the authors ’ own research and the research literature : those that improve the efficiency of eHealth research , and those that improve its quality . Results Efficiency strategies include : ( 1 ) think small : conduct small studies that can target discrete but significant questions and thereby speed knowledge acquisition ; ( 2 ) use efficient design s : use such methods as fractional-factorial and quasi-experimental design s and surrogate endpoints , and experimentally modify and evaluate interventions and delivery systems already in use ; ( 3 ) study universals : focus on timeless behavioral , psychological , and cognitive principles and systems ; ( 4 ) anticipate the next big thing : listen to voices outside normal practice and connect different perspectives for new insights ; ( 5 ) improve information delivery systems : research ers should apply their communications expertise to enhance inter- research er communication , which could synergistically accelerate progress and capitalize upon the availability of “ big data ” ; and ( 6 ) develop models , including mediators and moderators : valid models are remarkably generative , and tests of moderation and mediation should eluci date boundary conditions of effects and treatment mechanisms . Quality strategies include : ( 1 ) continuous quality improvement : research ers need to borrow engineering practice s such as the continuous enhancement of interventions to incorporate clinical and technological progress ; ( 2 ) help consumers identify quality : consumers , clinicians , and others all need to easily identify quality , suggesting the need to efficiently and publicly index intervention quality ; ( 3 ) reduce the costs of care : concern with health care costs can drive intervention adoption and use and lead to novel intervention effects ( eg , reduced falls in the elderly ) ; and ( 4 ) deeply underst and users : a rigorous evaluation of the consumer ’s needs is a key starting point for intervention development . Conclusions The challenges of distinguishing and distributing scientifically vali date d interventions are formidable . The strategies described are meant to spur discussion and further thinking , which are important , given the potential of eHealth interventions to help patients and families Objective : The need for information about the disease and coping with the consequences , as well as on available care and welfare services , is frequently unmet in people with dementia and their carers . To provide carers of community-dwelling people with dementia with tailored information , the DEMentia-specific dynamic interactive social chart ( DEM-DISC ) was developed . The impact on the daily life of people with dementia and their carers , the user friendliness and usefulness of a first prototype of DEM-DISC was evaluated . Method : DEM-DISC was tested among informal carers in a pretest – posttest control group design . Fourteen informal carers could access DEM-DISC at home during a two month period . Fourteen controls did not have access to DEM-DISC .  Data were collected by separate interviews with people with dementia and carers at pretest and posttest , by means of digital logging , short telephone interviews , and a bottleneck checklist during the intervention period . Results : People with dementia and informal carers reported more met and less unmet needs after DEM-DISC use and carers in the experimental group reported higher levels of competence than controls . Although they were not explicitly satisfied with this first prototype of DEM-DISC , carers found DEM-DISC easy to learn and relatively user friendly . Carers acknowledged the system 's benefits . Conclusion : The positive effects might be caused by the systematic and tailored individual way of information provisioning by DEM-DISC . It would be worthwhile to continue to develop DEM-DISC and to conduct r and omized trials on the impact on patients and carers as well as the impact on nursing home admission and healthcare expenditure Over the past 3 decades , more than 200 dementia caregiver interventions  have been tested in r and omized clinical trials and found to be efficacious . Few programs have been translated for delivery in various service context s , and they remain inaccessible to the 15 + million dementia family caregivers in the United States . This article examines translational efforts and offers a vision for more rapid advancement in this area . We summarize the evidence for caregiver interventions , review published translational efforts , and recommend future directions to bridge the research - practice fissure in this area . We suggest that as caregiver interventions are tested external to service context s , a translational phase is required . Yet , this is hampered by evidentiary gaps , lack of theory to underst and implementation challenges , insufficient funding and unsupportive payment structures for sustaining programs . We propose ways to advance translational activities and future research with practical applications
Objectives A variety of health services delivered via the Internet , or " eHealth interventions , " to support caregivers of people with dementia have shown evidence of effectiveness , but only a small number are put into practice .
This study aim ed to investigate whether , how and why their implementation took place .