Preparing the ground for the adaptation of iSupport in Switzerland

Abstract

Background In 2013, Switzerland developed a national dementia strategy, which entails the implementation of interventions for caregivers of people with dementia. iSupport, an online knowledge and skills training program purposely developed by the WHO holds the promise to respond to the complex and largely unmet needs of caregivers. There is evidence that online interventions can contribute to improve quality of care and caregivers’ wellbeing, but evidence to inform the implementation and scalability of iSupport is still extremely limited, We planned to seek funds, collaborate with local authorities, institutions, and stakeholders (including people with dementia and their informal caregivers) to locally adapt, pilot, test, and scale iSupport in selected Swiss cantons, and to pave the way to a formal monitoring of its implementation and effectiveness. Method We combined quantitative and qualitative methods in two preparatory studies: a pilot study aimed at testing the feasibility, acceptability, and accuracy of an innovative data capturing system to profile caregivers’ strain and needs, and care needs of people with dementia; a survey to assess the level of dementia knowledge, awareness and acceptance, and the willingness to participate in implementation research in a large sample of older adults. Result Data collection was feasible, well received, and efficient in a sample of caregivers of people with dementia (N=52). Strain was marked in all caregivers, who confirmed their interest in receiving a structured training to improve their understanding of dementia, and acquire competences and skills for care provision, and coping strategies. Of the 628 respondents to the survey, 47% considered dementia a normal part of aging, 95% considered research on support to family caregivers important or greatly important, and 45% declared their willingness to participate in a future study on this matter. Local authorities agreed (and committed) to mobilize resources and funds to support the implementation of iSupport, of its integration in existing health and social care services, and of appropriate indicators to monitor its use and impact. Conclusion Engaging local stakeholders, including local institutions and potential funders since the beginning of implementation research is feasible, and can contribute to address unmet needs of informal caregivers of people with dementia.