Background: There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. Methods: We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). Results: Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). Conclusions: We found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers’ needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.

Background: Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia. Objective: Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual. Methods: We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation. Results: The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from “lesson” to “chapter” and from “suffering from” dementia to “affected by” dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey). Conclusions: Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context.

Background There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. Methods We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). Results Caregivers (N=571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). Conclusions We found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

Objective:Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based online program developed by the World Health Organization (WHO) to provide education and support to informal everyday care. The study aims to describe the process and results of iSupport cultural adaptation in Switzerland.Methods:We used a mixed-methods design, with a community based participatory research approach. The adaptation of iSupport followed WHO adaptation guidelines and developed into five steps: content translation, linguistic and cultural revision by the members of the Community Advisory Board, validation with health professions faculty, validation with formal and informal caregivers, and fidelity check appraisal by members of the WHO.Results:Findings from each phase showed and consolidated the adjustments needed for a culturally adapted Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (e.g., from lesson to chapter; from suffering from dementia to affected by dementia); graphics and illustrations (e.g. from generalized objects’ illustrations to featured humans’ illustrations); exercises and case studies (e.g., from general, non-familiar scenarios to local and verisimilar examples); and extra features to add to the online version (e.g., short tailoring assessment questionnaire, interactive forum section, glossary). Additionally, based on the suggestions from the interviews with health professions faculty, we also created a training of trainers (ToT) version of iSupport for health care professionals.Conclusion:Our results show that adopting a community based participatory approach and collecting lived experiences from the final users and stakeholders is essential to meet local needs and to inform the further development, testing and implementation of an online evidence-based intervention to a specific cultural context.

BACKGROUND Informal caregivers of people with dementia are at high risk of developing mental and physical distress because of the intensity of the care provided. iSupport is an evidence-based digital program developed by the World Health Organization to provide education and support for the informal everyday care of people living with dementia. OBJECTIVE Our study aims to describe in detail the cultural adaptation process of iSupport in Switzerland. We specifically focused on the participatory strategies we used to design a culturally adapted, Swiss version of iSupport that informed the development of the desktop version, mobile app, and printed manual. METHODS We used a mixed methods design, with a community-based participatory approach. The adaptation of iSupport followed the World Health Organization adaptation guidelines and was developed in 4 phases: content translation, linguistic and cultural revision by the members of the community advisory board, validation with formal and informal caregivers, and refinement and final adaptation. RESULTS The findings from each phase showed and consolidated the adjustments needed for a culturally adapted, Swiss version of iSupport. We collected feedback and implemented changes related to the following areas: language register and expressions (eg, from “lesson” to “chapter” and from “suffering from” dementia to “affected by” dementia), resources (hyperlinks to local resources for dementia), contents (eg, from general nonfamiliar scenarios to local and verisimilar examples), graphics (eg, from generalized illustrations of objects to human illustrations), and extra features (eg, a glossary, a forum session, and a read-aloud option, as well as a navigation survey). CONCLUSIONS Our study provides evidence on how to culturally adapt a digital program for informal caregivers of people living with dementia. Our results suggest that adopting a community-based participatory approach and collecting lived experiences from the final users and stakeholders is crucial to meet local needs and to inform the further development, testing, and implementation of digital interventions in a specific cultural context.