An Online Minimally Guided Intervention to Support Family and Other Unpaid Carers of People With Dementia: Protocol for a Randomized Controlled Trial.

BACKGROUND: About three-quarters of people with dementia live in their own homes, with help from family members and/or other unpaid carers, such as friends or neighbors. Often, unpaid carers themselves experience negative consequences, such as stress, burden, and symptoms of depression or anxiety. Research has shown that these consequences can be alleviated by psychosocial and psychological interventions. Moreover, there are indications that those interventions can be effective when offered online. OBJECTIVE: This paper describes the protocol of a randomized controlled trial (RCT) that will take place in the Netherlands to evaluate the effectiveness of iSupport, a minimally guided, internet-based intervention to improve carers' mental health and coping resources. METHODS: A superiority two-arm RCT comparing the effects of the online support program with a waiting list control condition will be carried out in the Netherlands. The iSupport intervention was developed by the World Health Organization and is based on cognitive behavioral therapy principles. It has five main themes divided into 23 lessons. Carers can pick and choose which lessons they want to complete. We aim to recruit 200 unpaid carers. The experimental group (n=100) will be provided with access to the intervention for 3 months following randomization; those in the waiting list control group (n=100) will be granted access to the intervention after 3 months. Assessments will be conducted at baseline (T0), 3 months after baseline (post intervention, T1), and 6 months after baseline (follow-up, T2). The primary outcome is perceived stress, measured by the Perceived Stress Scale. Secondary outcomes are symptoms of depression and anxiety, caregiver burden, sense of competence, self-efficacy, mastery, and carers' attitudes toward dementia and their person-centered approach (ie, to what extent carers tailor the provided care to the interest, needs, and history of the person with dementia). RESULTS: Recruitment for the trial started in January 2019. As of July 2019, we have enrolled 120 participants. Data collection is expected to be completed by March 2020. Once all the data have been collected, we will conduct the data analyses between April and May 2020. We aim to publish our results in a manuscript by June 2020. CONCLUSIONS: Online interventions have shown promising results in improving the mental health of carers of people with dementia. Additionally, online interventions may overcome accessibility barriers. If successful, this intervention will have important potential for implementation as a public health intervention, since costs and support by trained staff are minimal. TRIAL REGISTRATION: Netherlands Trial Register (NTL) NL6417; https://www.trialregister.nl/trial/6417. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14106.

Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review.

INTRODUCTION: Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and support programs hold considerable promise for scaling up, we reviewed existing literature. METHODS: We systematically searched 6 databases to identify studies of Internet-based interventions designed to train and support caregivers of people with dementia, and we formally assessed risk of bias. Our prespecified primary outcomes of interest included both mental health and caregiver burden/perceived stress. Our secondary outcomes of interest included knowledge, quality of life of caregivers, quality of care, caregiver response to challenging behaviors, coping, and self-efficacy. RESULTS: Eight randomized control trials met our inclusion criteria involving over 900 participants. The content and structure of Internet-based interventions, outcome measures, and duration differed markedly, and selection, performance, and reporting biases were varied and on occasion of concern. Six studies reported outcomes in caregivers' mental health outcomes, 3 studies reported burden outcomes. Three studies reported knowledge skills, quality of life and reaction to challenging behaviours, whereas 2 studies reported changes in coping outcomes and self-efficacy. No studies reported outcomes on quality of care. DISCUSSION: Although there is some evidence that Internet-based interventions can improve mental health outcomes for informal caregivers of people with dementia, marked methodological diversity across studies prevented the robust pooling of the results. A concerted and cohesive approach from all stakeholders is now required to help realize the full potential of this emerging field.

ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review.

OBJECTIVES: Information and communication technologies (ICT) developers, together with dementia experts have created several technological solutions to improve and facilitate social health and social participation and quality of life of older adults living with dementia. However, there is a need to carry out a systematic literature review that focuses on the validity and efficacy of these new technologies assessing their utility to promote 'social health' and 'active ageing' in people with dementia. METHOD: Searches in electronic databases identified 3824 articles of which 6 met the inclusion criteria and were coded according to their methodological approach, sample sizes, type of outcomes and results. RESULTS: Six papers were identified reporting the use of 10 different interventions with people with dementia. Qualitative studies (four) showed a benefit of the use of technologies to foster social participation in people with dementia. At the same time, barriers to a widespread use of these technologies in this population were identified. A quantitative study and a mixed-method study with quantitative outcomes showed that ICT-based interventions promote more social behaviours than non-technology-based interventions. CONCLUSIONS: In the last years, several technological devices for living independently and fostering social health and social participation in people with dementia have been developed. However, specific outcome measures to assess social health and social participation are needed. Even though the analysed studies provided some evidence-base for the use of technology in this field, there is an urge to develop high quality studies and specific outcome measures.