Profiling early adopters of 'iSupport-Portugal': a country-specific version of a worldwide adapted digital support program for informal caregivers of people with dementia.

Introduction: Informal caregivers are the backbone of dementia care. iSupport is a World Health Organization digital support program for caregivers of people with dementia (PwD) that has been culturally adapted in several countries. iSupport was previously assessed for its feasibility in Portugal, and this country-specific version is now being utilized as a remote measurement tool (RMT). It constitutes the first internationally developed iSupport platform that is technically and scientifically enhanced to collect data on sociodemographic, clinical, and psychosocial variables of dementia care dyads. This paper characterizes the early adopters of iSupport-Portugal and discusses its exploration as a RMT. Methods: Cross-sectional data were collected between February and July 2023 from users registering on isupport-portugal.pt. To characterize caregivers and PwD, eligibility was limited to unpaid caregivers assisting community dwelling PwD (n = 173). Data were collected through self-administered instruments in users' accounts. Caregivers completed psychosocial measures on burden, anxiety, depression, quality of life, desire to institutionalize and usage of community services. Textual data on caregivers' needs underwent content analysis. Results: Among the early adopters of iSupport-Portugal (n = 365), 52.3% were informal caregivers, while 44.7% were health/social care professionals or others. Most caregivers were female (82.7%), middle-aged (M 51.7 years), highly educated (M 15.3 years) and supporting a parent (70.5%). Caregivers cared for a median of 24 h/week and 60.8% lived with the PwD. Neuropsychiatric symptoms were reported for 94.1% of PwD, who scored as moderately dependent (Barthel Index: M 14.0). Significant burden was reported by 88.4% of caregivers (≥21 on ZBI-22). Among caregivers scoring borderline or abnormal (≥8 on HADS) for anxiety, depression, or both (75.5%), 30.8% sought mental health counseling. Caregivers supporting a PwD not using community services scored higher on anxiety (p = 0.003), and depression (p = 0.009). Text data revealed unmet practical, emotional, and informational needs. Discussion: iSupport-Portugal has garnered fair initial interest from caregivers, particularly from those who are children, highly educated, and employed. Early adopters exhibited significant psychological distress, and both practical and emotional needs, which contrast with limited use of support services for themselves and the PwD. iSupport-Portugal shows promise for descriptive research on care dyads, particularly among newer generations of caregivers.

Willingness to institutionalize a relative with dementia: a web-platform assessment with the Portuguese adapted version of the Desire-to-Institutionalize Scale.

Introduction: Older persons with dementia (PwD) are more likely to be institutionalized than their counterparts without dementia. The caregiver's desire to institutionalize has been suggested as the most important predictor of actual institutionalization. This cross-sectional study aimed to culturally adapt the Desire to Institutionalize Scale (DIS) to a country with a high prevalence of dementia (Portugal) and examine its psychometric properties. Methods: The reliability, structural validity, and criterion validity of the DIS-PT were assessed by applying the scale using a remote measurement web platform. A sample of 105 dementia caregivers completed the DIS-PT and several psychosocial measures, including caregiver burden, anxiety, depression, quality of life, PwD functional independence, and neuropsychiatric symptoms. Results: The DIS-PT demonstrated good structural validity, with one factor explaining 75% of the total variance. The internal consistency of the scale was high (α = 0.802). Most caregivers (65.7%) endorsed at least one item on the DIS-PT (Mdn 2). The caregiver's desire to institutionalize was significantly associated with the caregiver, care recipient, and contextual variables previously known to affect institutional placement. These included the caregivers' occupational status, perceived burden, anxiety (but not depression), physical and psychological quality of life, care recipient education, severity of neuropsychiatric symptoms, and cohabitation with the caregiver. Discussion: This study offers preliminary support for the psychometric quality of the DIS-PT. The scale has practical applications in the early identification of caregivers considering nursing home placement, providing room for intervention in modifiable risk factors that may otherwise lead to the institutionalization of PwD. Remote measurement tools may hold value in assessing caregiving dyads non-intrusively and inexpensively.

Use of dementia and caregiving-related internet resources by informal caregivers: A cross-sectional study.

Informal dementia caregivers are at greater risk of experiencing physical and mental health issues as compared to the general population. Internet-based resources may provide accessible opportunities to backing informal dementia caregivers by addressing their information and support needs. This cross-sectional study aims to characterize the use of dementia and caregiving-related internet resources by caregivers and identify variables associated with such use. Primary data were collected through a web-based survey (N = 158). Linear regression models were used to assess the associations of predisposing, enabling, and need variables with the frequency of using the internet for caregiving-related purposes. Most caregivers (93%) have ever used the internet to gather general information about dementia. The frequency of using internet resources was, however, moderate. The multivariable linear regression model suggests that being younger (ß = -0.110, p = 0.009), not having a source of support to provide care (ß = -2.554, p = 0.012), having used a face-to-face psychosocial intervention at some point (ß = 2.731, p = 0.003), being employed (ß = 2.558, p = 0.013), and appraising one's own physical health negatively (vs. appraising it as similar; ß = 3.591, p < 0.001), are associated with a higher frequency of using caregiving-related internet resources. Our findings confirmed the association of age and perceived health status with caregiving-related internet use reported in other studies. The role of enabling variables as lifetime access to psychosocial interventions and having a usual source of support to provide care was a new addition. This study informs the design and deployment of information and support to dementia caregivers.

Feasibility of an online training and support program for dementia carers: results from a mixed-methods pilot randomized controlled trial.

BACKGROUND: iSupport is an online program developed by the World Health Organization to provide education, skills training, and social support to informal carers of persons with dementia. This pilot study examines the feasibility of the protocol for a main effectiveness trial of iSupport-Portugal and explores how the intervention and control arms compare over time on well-being outcomes. METHODS: A mixed-methods experimental parallel between-group design with two arms is followed. Participants were recruited nationwide, by referral or advertising, through the National Alzheimer's Association. Inclusion criteria are being Portuguese adults, providing e-consent, providing unpaid care to someone with dementia for at least 6 months, experiencing relevant scores on burden (≥ 21 on ZBI) or depression or anxiety (≥ 8 on HADS), and using webpages autonomously. Participants were consecutively randomized to receive iSupport-Portugal or an education-only e-book and were not blinded to group assignment. Data were collected online with self-administered instruments, at baseline, 3 and 6 months after. Outcomes comprise caregiver burden, depression, anxiety, QoL, positive aspects of caregiving, and self-efficacy. Generalized estimating equations were used to estimate group, time, and group-by-time effects. Intervention engagement data were extracted from iSupport's platform. Semi-structured interviews were conducted. RESULTS: Forty-two participants were allocated to the intervention (N = 21) and control (N = 21) arms. Participation (78.1%) and retention rates (73.8%) were fair. More carers in the control arm completed the study (N = 20, 95.2%) than in the intervention arm (N = 11; 52.4%) (χ2 = 9.98, p = .002). Non-completers were younger, spent less time caring, and scored higher on anxiety. Among carers in the intervention arm, the average attendance rate was of 53.7%. At post-test 38.9% of participants still used iSupport; the remainder participants interrupted use within 2 weeks (Mdn). For per-protocol analyses, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2 = 6.17, p = .046) and for environmental QoL (Wald χ2 = 7.06, p = .029). Those effects were not observed in intention-to-treat analyses adjusted for age. Interviewees from the intervention arm (N = 12) reported positive results of iSupport on knowledge and on experiencing positive feelings. No adverse effects were reported. CONCLUSIONS: This study provides information for a forthcoming full-scale effectiveness trial, as on the acceptability and potential results of iSupport-Portugal. iSupport is suggested as a relevant resource for Portuguese carers. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04104568 . 26/09/2019.

Dementia caregivers training needs and preferences for online interventions: A mixed-methods study.

AIM: To explore how informal caregivers of persons with dementia perceive training needs and preferences in the context of online training and support interventions. BACKGROUND: Informal dementia caregivers commonly present high needs across several domains. Paradoxically, they are more likely to have unmet needs and lower levels of service usage when compared to other caregivers. Most studies on unmet needs of dementia caregivers have been quantitative and resorted to assessment checklists, with a minority focusing on subjective needs. DESIGN: Mixed-methods. METHODS: Eighty-eight Portuguese digitally literate caregivers filled a web-based questionnaire collecting written statements on training needs and importance ratings on design preferences. Content analysis of text data was carried out by two independent researchers to check the reliability of the analytic process. Descriptive statistics were produced for ratings on design preferences, and associations with caregivers' sociodemographic and care-related variables were inspected. Reporting followed the criteria for reporting qualitative research checklist. RESULTS: Five main categories of training needs have emerged: knowledge of dementia; care interactions; caregiver self-care; community resources; and laws or regulations affecting the caregiver and the care recipient. The most reported need was on care interactions, on the subcategory of providing good quality care. Thematic prominence was analysed according to the caregiver, caregiving and health perception characteristics, with trends found on formal education, relationship with the care recipient, number of hours caring per week, perceived level of dependence of the care recipient and perceived physical and psychological health status of the caregiver. Most valued design features included the use of plain language, easy to interact interface and communication with a professional. CONCLUSIONS: Findings from this study further support the delivery of comprehensive interventions addressing the multiple needs of caregivers. RELEVANCE TO CLINICAL PRACTICE: Clues are provided for the delivery of online interventions, and conclusions are useful to health professionals working with dementia caregivers.

User feedback and usability testing of an online training and support program for dementia carers.

BACKGROUND: eHealth interventions have been explored to provide convenient support and training to informal dementia carers. Design and usability issues may however hinder user acceptance of Web-based interventions. iSupport is an online program developed by World Health Organization (WHO) to support informal dementia carers. PURPOSE: This study gathers user-feedback and evaluates the usability of the European-Portuguese version of iSupport. METHODS: A mixed-methods study was conducted. Two focus groups discussions (n = 15) and 15 usability test sessions were conducted with carers and health/social support professionals to collect data on user satisfaction and requirements on the program's contents and Web interface. The usability testing protocol comprised pre/post-test surveys, a structured interview and observation of task performance in the Web platform. Content analysis of text data was performed by two independent coders. RESULTS: Success rates were superior to 80% for most tasks. An average score of 89.5 on the System Usability Scale demonstrated an excellent perception of the program's usability. The program was perceived as trustworthy, and participants were globally satisfied with its aesthetics and easiness of use. Feedback and personalization were valued functional requirements, while no consensus was found for mood self-assessment or professional/peer interaction features. Lessons were considered culturally fit, thematically pertinent, and comprehensive. Suggestions for improvement were wide-ranging from program's layout to accessibility, usability, functional requirements, content format and lessons' themes. CONCLUSIONS: This study derives user requirements for an evidence-based program for dementia carers. Both the study findings and usability assessment methodology can be imported to the development of similar programs worldwide.

A Multipurpose Platform for Ambient Assisted Living (ActiveAdvice): Usability Study.

BACKGROUND: Aging of the global population is slowly paving the way for new markets for care products and services. The desire of older people to maintain their independence while remaining at home is boosting the development of ambient assisted living (AAL) solutions. Lack of user awareness of AAL solutions paired with an insufficient use of user-centered and participatory design approaches in the development of these products has hindered the uptake of these solutions by end users. OBJECTIVE: This study aims to describe the usability and users' experiences within a novel platform, ActiveAdvice, aimed at offering advice and a holistic market overview of AAL products and services. METHODS: Usability tests were performed on the developed platform among identified prospective end users, with 32 older adults and informal carers from 4 European countries being part of the user tests. The usability and appeal of the web interface design, information flow, and information architecture were analyzed by collecting both objective and subjective measures. These would include pretest and posttest surveys, along with a series of think-aloud tasks to be performed within the platform. RESULTS: The outcomes suggest that the ActiveAdvice platform's objectives and functionalities are mostly aligned with the needs and expectations of end users, who demonstrated interest in using it, stressing its purpose along with its simple and intuitive interaction. Task completion rates were high, and participants had good satisfaction rates when navigating the platform. However, the tests still advocate for an improved design at some points and better disclosure of information. CONCLUSIONS: Our findings shed light on a few peculiarities of interface design, information architecture, user needs, and preferred functionalities, which should be applied to future developments of similar platforms with related services. The AAL field could benefit from tools supporting the dissemination of available AAL solutions and how they can improve one's quality of life. These tools may benefit not only older adults but also caregivers, business owners, and governmental employees.

Access and Retention of Informal Dementia Caregivers in Psychosocial Interventions: A Cross-Sectional Study.

Underutilization of community care services has been described for informal dementia caregivers. Most research has however examined caregivers' access to home or respite care rather than to services for themselves. The aims of this study are: to describe access and retention of informal dementia caregivers in psychosocial interventions; examine the perceived effects of interventions among users and motives for non-use among non-users; and compare caregivers with and without lifetime access and retention in psychosocial interventions across predisposing, enabling and need variables. A cross-sectional study was conducted with 179 Portuguese caregivers, who replied to a web-based survey. Participants were fairly distributed among those who have never (49.7%) and those who have ever accessed (50.3%) psychosocial interventions. Individual psychological support was the most used intervention (32.2%). Caregivers' age, time elapsed since diagnosis and the relationship with the care receiver were associated with lifetime access to various intervention types. Dropout was above 50% for most intervention types, except for psychoeducation (31.8%). Associations were found between a history of dropout/retention and caregivers' education, perceived mental health, and the number of hours spent caring. Most users of psychoeducational interventions (>80%) appraised it as beneficial to learn about the disease, provide quality care and cope with caregiving. Informational barriers were the most reported by non-users of psychoeducational interventions (45.1%). The findings show that dementia caregivers continue facing barriers to use and keep using community services for themselves. The influence of particular predisposing and need variables on access to psychosocial interventions can vary according to intervention types.

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal.

BACKGROUND: Informal caregivers of people with dementia often struggle with several stressors, and their mental and physical health can be negatively affected by providing care. iSupport is an online self-help programme designed by the World Health Organization to provide education, skills training, and support to those caregivers. PURPOSE: This paper describes the development of an adapted version of iSupport to the Portuguese culture. We present the adaptation process, methods used and results for the country-specific version. METHODS: The adaptation of iSupport was operationalised in five steps: needs assessment; content translation by an authorised translator and technical accuracy check by health professionals; cultural adaptation; independent appraisal of contents by an expert panel; and fidelity check by programme authors. RESULTS: Findings indicated the adjustments needed in the original iSupport contents. Overall, 323 text excerpts were proposed to adaptation, comprising semantic and conceptual equivalence of expressions, and adjustments to cultural habits, customs, traditions, local resources, and practices. The expert panel identified the need to reformulate definitions, designations, recommendations, and case studies to fine-tune the original contents to local knowledge and practices. Most adaptations were considered to be in line with the core concepts of the original programme. CONCLUSIONS: iSupport is an innovative tool capturing the attention of several organisations around the world interested in translating, adapting, and using the programme. This paper is the first describing the methodological approach for culturally adapting iSupport, constituting an essential resource for those aiming to replicate the process or culturally adapting evidence-based interventions. Tailoring iSupport to the Portuguese context was critical to accommodate the cultural experiences of the target group as well as the knowledge, theoretical approaches, and practices of local professionals. The European-Portuguese version of iSupport introduces the adjustments needed to implement a useful new intervention programme aimed at minimising the psychological distress of Portuguese caregivers.

Assessing attitudes towards online psychoeducational interventions: Psychometric properties of a Brief Attitudes Scale.

Participant attitudes are an explanatory factor for attrition in online health-related interventions. However, its assessment prior to interventions start is uncommon, partly because proper measures are missing. This study presents the psychometric properties of a new scale measuring attitudes towards online psychoeducational interventions (OPIs). Structural validity, reliability and screening performance of the Online Psychoeducational Intervention - Brief Attitudes Scale (OPI-BAS) were studied in a sample of 157 dementia caregivers. Scale cut-off scores were derived to categorise the participants into 'OPIs sympathisers' or 'non-sympathisers'. Groups were compared across sociodemographic and internet use variables. A parsimonious five-item version of OPI-BAS demonstrated good structural validity, with one factor explaining 63.3% of variance. Internal consistency of the scale was high (α = 0.85). OPI-BAS showed good screening performance in identifying individuals with either a preference to use conventional face-to-face or online psychoeducational interventions (area under the curve = 0.84). An optimal cut-off score of 20 was suggested by the receiver operating characteristic graph, providing good sensitivity (74%) and specificity (84%). No significant differences were found between groups on sociodemographic and internet use variables. Attitudes towards OPIs were overall positive, but face-to-face interventions were preferred. This study offers preliminary support to the psychometric quality of OPI-BAS. This short scale has practical applications for research and intervention.

Online training and support program (iSupport) for informal dementia caregivers: protocol for an intervention study in Portugal.

BACKGROUND: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes. METHODS: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol. DISCUSSION: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.