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ORIGINAL RESEARCH article

Front. Psychol.
Sec. Psychology of Aging
Volume 15 - 2024 | doi: 10.3389/fpsyg.2024.1359695

Profiling Early Adopters of 'iSupport-Portugal': A Country-Specific Version of a Worldwide Adapted Digital Support Program for Informal Caregivers of People with Dementia

Provisionally accepted
  • 1 ICBAS, School of Medicine and Biomedical Sciences, Institute of Biomedical Sciences Abel Salazar, University of Porto, Porto, Portugal
  • 2 Center for Health Technology and Services Research (CINTESIS), Porto, Portugal
  • 3 Center of Research, Diagnosis, Training and Care of Dementia (CIDIFAD), Riba D'Ave, Portugal
  • 4 University of Aveiro, Aveiro, Aveiro, Portugal
  • 5 Faculty of Medicine, University of Porto, Porto, Portugal

The final, formatted version of the article will be published soon.

    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. 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. 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 hours/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 counselling. 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. 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.

    Keywords: Caregivers, Dementia, digital technologies, Mental Health, Remote measurement

    Received: 21 Dec 2023; Accepted: 12 Apr 2024.

    Copyright: © 2024 Sousa, Alves, Ribeiro, Freitas, Ferreira and Paúl. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Soraia T. Sousa, ICBAS, School of Medicine and Biomedical Sciences, Institute of Biomedical Sciences Abel Salazar, University of Porto, Porto, Portugal

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