More than 55 million people have dementia in the world, and a number of projections indicate that there will be nearly 78 million by 2030 and 139 million in 2050 (1). Most people with dementia are cared for by family members or other unpaid caregivers, especially in countries with limited resources where there is shortage or lack of formal support services for dementia (1).

Family caregivers of people living with dementia, most of whom are women, are frequently exposed to multiple stressors that affect physical and mental health, including high task demands, physical and emotional exhaustion, financial problems and limitations in social and leisure activities, in addition to dealing with the effects of dementia on the family member’s well-being (2, 3). Offering the practical and effective support means to this population is essential to prevent and mitigate such impacts (4).

Online programs can be a support strategy with positive effects for caregivers (5, 6), and may even be a viable alternative to traditional face-to-face support modalities, as it has the potential to reach a larger target audience by overcoming geographic barriers, and for being cheaper, flexible, and adaptable to the caregivers’ routines (4, 7, 8).

Systematic reviews show that online interventions for family caregivers of people who have dementia can be effective in increasing psychological well-being, helping to reduce depression, anxiety and stress symptoms resulting from caregiving, through improved self-efficacy, satisfaction, confidence and care skills (6, 7, 9–11). The social distancing resulting from the COVID-19 pandemic has corroborated the use of new technologies to support families in need of care, especially those who cannot participate in face-to-face activities (12, 13).

However, interventions offered in virtual format and using an Internet connection may present some challenges related to technology (design, usability, level of digital literacy and acceptability), as well as organizational (lack of information about the intervention, gap between research and implementation), socioeconomic (lack of funding and cost of technology) and ethical (privacy, mechanization of care) (14). Satisfactory usability and acceptability levels are related to better involvement and coping in the use of new technologies (15, 16).

A review study on the usability and acceptability of Internet-based interventions developed with caregivers of people who have dementia shows that, for the most part, they are effective, efficient and satisfactory, as well as being considered useful and acceptable by this population (17). Involvement of the target audience in the process of developing and implementing new technologies that use the Internet is extremely important to improve usability and acceptability of the program (14). A number of research studies indicate that caregivers of people who have dementia, for example, prefer to receive online support through audio and video, as it is the strategy that best suits day-to-day care and generates greater satisfaction and well-being (16, 18). Considering such preferences is fundamental so that efficacy of the program for this population segment can be improved.

Development and implementation of supportive interventions that are accessible, acceptable and effective for informal caregivers of people who have dementia is a strategic priority in the Global Action Plan for the Public Health Response to Dementia 2017–2025 (19). In this perspective, the World Health Organization (WHO) has developed iSupport for Dementia, an online program that aims at providing education, skills training and support for family caregivers of people who have dementia (20). The iSupport program presents 23 lessons distributed across five modules, which cover well-established topics on caregivers’ care and self-care.

The initial version of iSupport was developed in English using an encompassing and multicultural approach for transcultural adaptation in several countries, such as Portugal (21), Australia (22), India (23), Netherlands (24), and Switzerland (25). In Brazil, the iSupport cross-cultural adaptation process was carried out as part of a multicenter study funded by the National Health Fund, in partnership with the Ministry of Health, following all WHO recommendations.

iSupport has the potential to improve universal access to education and support for family members so that they can better deal with socio-emotional issues that arise from interacting with a person who has dementia (26). In the context of online interventions, programs with high usability and acceptability can reduce barriers to use, improve user experience and engagement, and prevent program abandonment (27). In this way, evaluating usability and acceptability, as well as exploring the users’ perceptions about the iSupport version adapted for the Brazilian context - iSupport-Brasil or iSupport-BR - makes it possible to understand the feasibility of a global and evidence-based resource for use with/by caregivers of people who have dementia in Brazil. The objective of this study was to evaluate usability and acceptability of iSupport-BR, exploring the perceptions of caregivers of people who have dementia about benefits, facilitators and barriers to using the program in a preliminary study.

A mixed-methods study was carried out, involving a usability test stage of the system interface (Stage 1) and a subsequent preliminary usability and acceptability evaluation of iSupport-Brasil by caregivers (Stage 2). The procedures adopted were based on the adaptation guide made available by WHO to the licensees. The guide offers standardized advice for translating and culturally adapting iSupport to fit the local target group while guaranteeing that the adapted version is equivalent to the generic one. The usability and acceptability tests allow noticing the users’ interaction with the system (28), with direct implications for the later dissemination and use of the program. They can include techniques for the collection of qualitative and quantitative data. Due to the COVID-19 pandemic, the study was entirely conducted online.

Both qualitatively and quantitatively, this study evaluated usability and acceptability of the translated and adapted version of iSupport-Brasil, exploring the perceptions, benefits, facilitators and barriers for using the program in the preliminary study. In general, the program was considered acceptable and usable by the family caregivers, presenting excellent usability and satisfaction levels. Regarding the interface, the participants stated that it was easy to use, that the content was easy to understand, and that it fulfilled their expectations, in addition to assisting in the care provided. The usability and acceptability test results showed good outcomes in task performance, satisfaction and program usefulness, with an excellent perception of program usability.

Our findings are consistent with the study carried out by the iSupport research team from Portugal, in which usability of the program showed success rates above 80% in the tasks. A mean score of 89.5 in the SUS scale, from a cutoff value of 68 points (33), also showed an excellent usability perception in the Portuguese version. The program was considered reliable and the participants were satisfied with its aspect and ease of use (27). Despite the positive feedback regarding iSupport-Brasil, we noticed the need to implement improvements in the program in terms of style and aesthetics (visual inconsistencies, icons and non-clickable elements), as well as functional requirements (lack of feedback, of the customization code of the kinship degree, and of the percentage of activities completed in some tasks). In the iSupport-Portugal version, some improvement suggestions were also indicated, such as the program’s presentation, functional requirements, format of the content and topics of the classes (27).

Although there is a need for improvements, the literature shows that having good performance in the tasks, together with positive evaluations by the participants about the ease of use of products, services and interactive electronic environments (eSystems), suggests that most usability problems are not serious, although they must be solved for a more satisfactory user experience and efficient navigation (34). For this reason, global dementia policies recognize the potential benefits of digital health in achieving universal health coverage, but emphasize the importance of measuring its usefulness and affordability before its widespread implementation (26).

The limited support of a small size of participants from the family and target context can be extended only in part to other limited supports, with the presence of limited resources from the iSupport group that will be quickly contributed to our data. In addition, group compositions vary within other groups, which may contribute to reducing biases, such as the effect of social desirability. Most of the participants in both stages of the study had high schooling (≥12 years) and previous experience in using electronic equipment with the Internet; therefore, the results do not reflect the perceptions of caregivers with lower schooling levels and who probably have less digital literacy (35, 36). In fact, Teles et al. (21) point out that it is possible that iSupport is more frequently used by a specific segment of caregivers of people who have dementia, such as more educated caregivers, secondary caregivers (less involved with care than primary caregivers) and caregivers with concomitant formal work activity. In order to ensure acceptance and dissemination of technology use, mainly among the oldest and low-schooled caregivers, Tsai et al. (37) suggest that digital health support should therefore be integrated to the interventions that involve Internet use.

Our research focused on a restricted and specific cultural and health environment in Brazil, although a diverse group of participants was included in terms of age and care context, only one male participated and one caregiver had four or fewer years of schooling. Schooling is a determining factor for Internet use. The lack of incentives in countries where Internet use by caregivers of people who have dementia is potentially lower; for example, in low- and middle-income countries, it represents an important gap, as almost 70% of the people who have dementia currently live in such countries and their family caregivers are mostly unsupported (19). However, we decided to use qualitative methods to extract and explore in depth the nature of barriers in the acceptance and use of iSupport at the local level. Similar approaches are needed in all configurations and contexts where iSupport is being deployed.

This study has some limitations that should be considered. Our research focused on a restricted and specific cultural and health environment in Brazil, although a diverse group of participants was included in terms of age and care context, only one male participated and one caregiver had four or fewer years of schooling. Schooling is a determining factor for Internet use. The lack of incentives in countries where Internet use by caregivers of people who have dementia is potentially lower; for example, in low- and middle-income countries, it represents an important gap, as almost 70% of the people who have dementia currently live in such countries and their family caregivers are mostly unsupported (19). In addition, our findings are limited to a small sample size and may be extended to other contexts only in part. The group compositions vary within other groups, which may contribute to reducing biases, such as the effect of social desirability. The use of qualitative methods was important to extract and extract and explore in depth the nature of barriers in the acceptance and use of iSupport at the local level. Similar approaches are needed in all configurations and contexts where iSupport is being deployed.

It is hoped that this study will help to enhance the positive effects of iSupport-BR, as it made it possible to evaluate and improve acceptability and usability of the Brazilian version of this program. It is also hoped that this study can contribute to the well-being of countless people who will benefit from this initiative, meeting the global goals of supporting individuals affected by dementia. This initiative may also support the formulation of technological strategies to help solve other social and health challenges and the implementation of a care policy for caregivers of people who have dementia in Brazil. A future study of the efficacy and effectiveness of iSupport-Brasil will be able to verify to what extent an online platform is able to help this population, promoting their quality of life and mental health.

The Brazilian version of iSupport was considered acceptable and usable by family caregivers of people who have dementia in the preliminary study, presenting excellent usability and satisfaction levels, and positive subjective perceptions about the program. The caregivers’ impressions reinforce the importance of the participation of possible users in the development of new electronic support programs. Brazil is the first country in Latin America to implement the cross-cultural adaptation of the iSupport program, and was even a pioneer in the use of the program on smartphones, and it can therefore be an example for other countries that are adapting this program or other online interventions.

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

The studies involving human participants were reviewed and approved by Research Ethics Committee of the Universidade Federal de São Carlos. The patients/participants provided their written informed consent to participate in this study.

AO, DM, CF, EB, DO, KC, LC, FS, MZ, AG, and SP conceived, designed, drafted, and revised the manuscript. All authors have read and agreed to the published version of the manuscript.