iSupport-Portugal: Challenges and Insights in Designing a Web

Platform for Intervention and Research on Informal Dementia

Caregivers

Soraia Teles

1,2 a

, Constança Paúl

1,2 b

, João Viana

2,3 c

, Alberto Freitas

2,3 d

, Sara Alves

2,4 e

Óscar Ribeiro

2,5 f

and Ana Ferreira

2,3 g

Department of Behavioral Sciences, School of Medicine and Biomedical Sciences University of Porto (ICBAS-UP),

Rua de Jorge Viterbo Ferreira, 228, 4050-313 Porto, Portugal

RISE-Health, Rua Dr. Plácido da Costa, 4200-450, Porto, Portugal

Department of Community Medicine, Information and Health Decision Sciences (MEDCIDS),

Faculty of Medicine of the University of Porto, Rua Dr. Plácido da Costa, 4200-450, Porto, Portugal

Santa Casa de Misericórdia de Riba D’Ave/CIDIFAD - Centro de Investigação, Diagnóstico, Formação e

Acompanhamento das Demências, Tv. Conde de Riba de Ave, 4765-288 Riba d'Ave, Portugal

Department of Education and Psychology, University of Aveiro, 3810-198, Aveiro, Portugal

Keywords: Dementia, Informal Caregivers, eHealth Intervention, Remote Measurement Tool.

Abstract: eHealth programmes are increasingly explored to improve access to training and support for informal

caregivers of people with dementia (PwD). iSupport-Portugal is an eHealth programme for these caregivers,

culturally adapted from the World Health Organization's original iSupport. iSupport-Portugal is the only

version being explored internationally as a remote measurement tool (RMT) to collect sociodemographic,

health and psychosocial data on care dyads. The aim of this paper is to discuss the challenges and lessons

learned in the deployment of iSupport-Portugal. Four studies were conducted, including a mixed-methods

cross-sectional study of informal dementia caregivers' attitudes and needs towards eHealth interventions

(N=157), a usability study (N=17), a pilot randomised controlled trial (N=42), and an ongoing prospective

cohort study (N=173). Insights and recommendations are provided on user uptake of eHealth interventions

and user-centred approaches, ethics and data privacy considerations, study design for usability and

effectiveness evaluation, and the use of platform data for research. This paper provides insights relevant to

researchers, developers, and designers involved in implementing digital solutions for caregivers of PwD and

other audiences. To realise the full potential of eHealth interventions and RMTs, it is imperative to establish

guidelines that address the ethical, technological, and methodological complexities of the field.

1 INTRODUCTION

Worldwide, 55 million people live with dementia,

with 9.9 million new cases reported each year,

including 2.5 million in Europe alone (WHO, 2019).

Dementia remains a major cause of dependency

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among older adults (Sousa et al., 2010), with those

diagnosed often relying on informal caregivers for

daily activities.

Informal caregivers of people with dementia

(PwD) are at a heightened risk of experiencing

physical and mental health issues compared to both

Teles, S., Paúl, C., Viana, J., Freitas, A., Alves, S., Ribeiro, Ó. and Ferreira, A.

iSupport-Portugal: Challenges and Insights in Designing a Web Platform for Intervention and Research on Informal Dementia Caregivers.

DOI: 10.5220/0013328100003938

In Proceedings of the 11th International Conference on Information and Communication Technologies for Ageing Well and e-Health (ICT4AWE 2025), pages 92-103

ISBN: 978-989-758-743-6; ISSN: 2184-4984

the general population and caregivers of people with

other chronic diseases (Bertrand et al., 2006; Gilhooly

et al., 2016). Psychosocial interventions for informal

caregivers have been shown to be effective in

improving their well-being, but access to these

interventions remains problematic, and they can also

be expensive (Cheng et al., 2020). Caregivers may

face barriers to participating in these interventions,

which are typically delivered in person, such as

arranging substitute care, managing work schedules,

and dealing with social stigma (WHO, 2015). There

is evidence of underutilisation, delayed access, and

high dropout rates among dementia caregivers in

conventional psychosocial interventions (Stephan et

al., 2018).

Recognising this, the World Health Organization

(WHO), in its Global Action Plan on the Public

Health Response to Dementia (WHO, 2017), aims to

strengthen accessible support programmes for

informal caregivers and has launched "iSupport for

Dementia" to contribute to this goal. iSupport is an

eHealth programme tailored to provide support and

training to informal caregivers of PwD (Pot et al.,

2019). The programme has been culturally adapted

for implementation in multiple countries, including

Australia (Xiau, 2019), Brazil (Oliveira et al., 2020),

India (Baruaha et al., 2021), Switzerland (Fiordelli &

Albanese, 2020), Indonesia (Turana et al., 2023),

Spain (Molinari-Ulate et al., 2023), Greece

(Efthymiou et al., 2022), Japan (Yamashita et al.,

2022) and Portugal (Teles, Napolskij, et al., 2020).

The European Portuguese version of iSupport was

one of the pioneering versions studied for its

requirements, usability, acceptability, and feasibility

as both an intervention and a data collection tool. It

serves the dual purpose of supporting dementia care

dyads while facilitating research in the field,

distinguishing iSupport-Portugal from other

international versions.

Recognised challenges in implementing eHealth

interventions such as iSupport include ethical,

technological, and research-related barriers.

Considerations such as data privacy, security, ethical

dilemmas, user trust, sustainability, data preparation

and validation, and evaluation of effectiveness are

orthogonal to eHealth interventions (Hassan, 2020).

It is therefore imperative for the scientific community

to collectively address these challenges.

The aim of this paper is to outline and discuss the

challenges identified in four comprehensive studies of

iSupport-Portugal. These studies examined the

eHealth programme both as an intervention tool and

as a platform for remote data collection, including i. a

cross-sectional study on the attitudes and requirements

of informal dementia caregivers towards eHealth

interventions; ii. an acceptability and usability study;

iii. a pilot randomised controlled trial (RCT) to assess

the feasibility of the RCT protocol; and iv. a

prospective cohort study to assess the feasibility of

iSupport-Portugal for remote data collection of

caregiving dyads. By drawing insights from these

studies, this paper provides valuable perspectives for

researchers, practitioners, developers and designers

working on digital solutions for caregivers of people

with dementia and similar audiences.

2 iSupport-Portugal

Originally developed by WHO, "iSupport" is a

programme that is available 24/7 and free of charge

to any registered user via a web interface. The

programme consists of five modules and 23 lessons

and uses problem-solving and cognitive-behavioural

therapy techniques as intervention strategies. These

lessons cover topics that are commonly included in

psychoeducational interventions for caregivers of

PwD, including self-care, managing behavioural and

psychological symptoms of dementia,

communication and decision making with PwD, and

everyday caregiving tasks.

The programme has been designed as a self-

directed tool that works without a therapist. It offers

complete flexibility in terms of intervention planning,

allowing individuals to progress at their own pace and

select lesson plans tailored to their needs. To enhance

the user experience, the programme incorporates

personalisation features (e.g. personal information

provided during registration is used to customise in-

text references). The programme includes care

scenarios that reflect real-life situations, allowing

caregivers to practice skills while relating to common

experiences. Interactive skill training exercises

provide immediate feedback, creating a learning

environment. iSupport offers focused lessons that

combine textual information with auditory elements,

including audio-guided relaxation exercises, but with

a primary focus on textual content. Caregivers can

assess their mood and track changes over time using

a graphical display.

Different versions of iSupport have been

developed around the world. The adaptation of

iSupport for Portugal (see Figure 1) was prompted by

contextual needs, in particular the high prevalence of

dementia in the country (21 cases per 1000

inhabitants) compared to other OECD countries

(OECD, 2019). In addition, there is a societal

expectation in Mediterranean countries for families to

iSupport-Portugal: Challenges and Insights in Designing a Web Platform for Intervention and Research on Informal Dementia Caregivers

Figure 1: iSupport-Portugal landing page.

care for their older relatives, leading to a higher

prevalence of informal care, often influenced by social

pressure (del-Pino-Casado et al., 2011).

The adaptation of iSupport to Portugal, detailed

elsewhere (Teles, Napolskij, et al., 2020), led to

several studies, including cross-sectional research on

the needs, requirements, and attitudes of dementia

caregivers towards online interventions (Teles,

Ferreira, et al., 2020; Teles, Paúl, et al., 2020, 2022),

as well as research on the acceptability, usability of

iSupport-Portugal (Teles, Paúl, et al., 2021) and its

feasibility in a mixed-methods pilot RCT (Teles,

Ferreira, et al., 2022b).

Current research efforts with iSupport are directed

towards extending the platform beyond its original

intervention purpose, as a remote measurement tool

(RMT) for gathering comprehensive

sociodemographic, health and psychosocial data on

dementia care dyads. Such data could be invaluable

for profiling, understanding needs, and tracing

caregiving trajectories. RMTs facilitate the collection

of behavioural, health, and well-being data in real

time, inexpensively, and unobtrusively through web

platforms, mobile apps, sensors, and wearables

(Simblett et al., 2018). To use iSupport-Portugal as an

RMT, several steps were required to technically and

scientifically improve the platform. The following

section outlines the approach taken in the iSupport-

Portugal studies, which revealed numerous

challenges and insights in deploying an intervention-

research tool for dementia care dyads.

3 MATERIALS AND METHODS

A set of four studies on iSupport-Portugal aimed to

provide a comprehensive understanding of whether

and how such an eHealth platform could be usable

and useful to support informal dementia caregivers

(intervention aim), and to gather information on the

profiles, needs and outcomes of dementia care dyads

(research aim). Figure 2 summarises the methods

used in the iSupport-Portugal studies. First, a mixed-

methods cross-sectional study investigated the

attitudes and requirements of informal dementia

caregivers towards eHealth interventions (Teles,

Ferreira, et al., 2020; Teles, Paúl, et al., 2020, 2022).

The aim was to provide insights for the

implementation of iSupport-Portugal. A non-

probability sample of 157 digitally literate informal

caregivers of PwD living in the community was

recruited nationally through advertising by the

national Alzheimer's Association and local dementia-

related organisations. Participants completed a web-

based survey assessing attitudes and requirements for

online interventions using specially designed scales

(Teles, Ferreira, et al., 2020).

Secondly, a mixed methods acceptability and

usability study of iSupport-Portugal was conducted.

Seventeen informal caregivers took part in either

focus groups or usability test sessions, during which

their task performance on the interface was observed.

This evaluation included usability surveys and post-

test interviews (Teles, Paúl, et al., 2021).

ICT4AWE 2025 - 11th International Conference on Information and Communication Technologies for Ageing Well and e-Health

Figure 2: Methodological approach of iSupport-Portugal studies. Note: Study 4 mentions 173 caregivers corresponding to

those who self-declared as such at registration into the programme.

Thirdly, a mixed-methods pilot RCT was

conducted to assess the feasibility of a protocol to

determine the effectiveness of iSupport-Portugal

(Teles, Ferreira, et al., 2022b). Caregivers with

significant scores on burden, depression, or anxiety

scales were recruited through referrals from the

national Alzheimer's Association and randomised to

one of two arms: intervention (iSupport, n= 21) or

control (e-book, n= 21). Both groups underwent

assessments of burden, anxiety, depression, positive

aspects of caregiving, quality of life, and self-efficacy

before initiating the programme (baseline) and at 3

and 6 months afterward. Semi-structured interviews

were conducted with the intervention group to collect

data on their use and perceived outcomes of iSupport.

Fourthly, ongoing research aims to use iSupport-

Portugal as an RMT employing a prospective cohort

design. Baseline and follow-up data are currently

being collected from registered users of iSupport-

Portugal who self-identify as informal dementia

caregivers, using their personal accounts.

Technical and scientific enhancements were

implemented to ensure the integrity, security, and

ethical handling of the data collected for this purpose

through iSupport-Portugal. Measures to be

incorporated into the platform were selected,

permission for their use was obtained and they were

programmed according to licensing requirements.

Complementary data collection forms were created

and integrated into the platform, focusing on

appropriate form fields and validation processes to

increase data accuracy. A unique feature of iSupport-

Portugal, compared to other iSupport international

versions, is its diagnostic module. This module was

custom-built to include assessment scales focusing on

sociodemographic, clinical, and psychosocial

variables related to caregivers and PwD. Moreover,

measures have been taken to ensure proper and secure

data storage. In collaboration with the Data Protection

Officer and the Digital Services of the University of

Porto (platform host), a thorough security audit of the

platform was carried out. After the public launch of

the platform and the formation of a user group, the

collected data underwent extraction, validation, and

cleaning processes.

iSupport-Portugal: Challenges and Insights in Designing a Web Platform for Intervention and Research on Informal Dementia Caregivers

The following section outlines the findings of this

comprehensive set of studies.

4 RESULTS AND DISCUSSION:

INSIGHTS FOR DEPLOYING

INTERVENTION-RESEARCH

PLATFORM

The studies on iSupport-Portugal revealed challenges

and insights for deploying and conducting research on

eHealth interventions and RMT, which are detailed

next.

4.1 User Uptake of eHealth

Interventions and User-Centred

Design

i. eHealth interventions don't always address the

shortcomings of face-to-face interventions.

While eHealth interventions are often seen as an

alternative to mitigate accessibility issues, our

research shows that the most important barrier is

informational, i.e., caregivers are not aware of the

interventions available (Teles, Ferreira, et al., 2021).

Simply making an online programme available and

searchable (website optimisation) may not be enough,

as information overload and concerns about

trustworthiness remain significant barriers.

Establishing a supportive community around the

eHealth platform, disseminated through practitioners,

caregiver associations, municipalities, and informal

social media groups, is essential to mitigate these

information barriers.

Moreover, contrary to previous suggestions that

individuals who encounter barriers to accessing face-

to-face services are more inclined to turn to internet

resources (Bhandari et al., 2014), our research shows

that previous access to conventional interventions is

linked with the use of eHealth interventions (Teles,

Ferreira, et al., 2022a). While it has been suggested

that caregivers facing emotional distress may be more

likely to turn to internet resources due to factors such

as stigma or a reluctance to seek in-person services

(Kim, 2015), our observations of iSupport users show

lower usage and higher dropout rates among those

experiencing greater psychological distress (Teles,

Ferreira, et al., 2022b; Teles, Paúl, et al., 2022).

Furthermore, while online interventions were

designed to address issues of accessibility and high

dropout rates in conventional interventions, they are

also susceptible to high dropout rates (Christie et al.,

2018). Dropout in online interventions remains a

notable challenge, with implications for both

intervention effectiveness and research validity (see

section 4.3). Consistent with previous research

(Christie et al., 2018), we found that design elements

such as the ability to customise the intervention

schedules and lesson plans, were important in

minimising dropout.

ii. Online information and support-seeking

behaviours are subdued among informal caregivers,

with trustworthiness playing a significant role.

The perception of online information as

overwhelming and the inability to differentiate

between trustworthy and untrustworthy websites

have been identified in our research as barriers to

caregiver adoption of online interventions (Teles,

Paúl, et al., 2021, 2022). Trust in online platforms

depends on various factors including user

characteristics and design/technology-related

features. In the case of iSupport-Portugal, the

authority of the owner emerged as the most

significant element of trust, underscored by the clear

endorsement of reputable organisations involved in

the programme through logos, written statements, and

contact information (Teles, Paúl, et al., 2021).

Illustrations also influenced preconceptions about the

content of the programme; if perceived as juvenile or

outdated, they could lead to expectations of basic

programme content (Teles, Paúl, et al., 2021).

iii. Online resources are primarily used for

"altruistic" purposes and can be perceived as a

caregiving task, with design playing a key role. In a

sample of Portuguese dementia caregivers, a

moderate frequency of online help-seeking was

observed. We found that caregivers were less likely

to seek information and support for their own benefit

than for the benefit of the care recipient (Teles, Paúl,

et al., 2022). Caregivers seem to perceive the use of

internet resources as a caregiving task. We've learned

that the design of most online resources for

caregivers, which are often text-based and resemble

formal training or scholarly programmes, may

reinforce such perceptions (Teles, Paúl, et al., 2021).

Insights from iSupport users suggest that programmes

that incorporate gaming elements, social networking,

and multimedia components can help to make

interventions into enjoyable activities rather than

adding to caregiver’ responsibilities (Teles, Paúl, et

al., 2021).

iv. Even within digitally literate groups, attitudes

towards eHealth interventions warrant consideration.

ICT4AWE 2025 - 11th International Conference on Information and Communication Technologies for Ageing Well and e-Health

In a sample of Portuguese dementia caregivers,

attitudes towards online interventions were

moderately positive, with more participants

expressing a preference for face-to-face

interventions, which were perceived as more

trustworthy and effective (Teles, Ferreira, et al.,

2022a). These findings are particularly relevant as

they stem from a group of digitally literate caregivers

who do not require new skills to use an eHealth

programme. Most caregivers expressed greater trust

in online interventions for training purposes rather

than for emotional support, suggesting a need to raise

awareness about the therapeutic aspects of this

intervention modality, possibly through the

establishment of a network of advocates

(professionals and caregivers). It is also crucial to

involve the target groups throughout the entire

development process, with an up-front assessment of

their tendencies to seek health and care-related

information online.

v. eHealth interventions must not be seen as

substitutes for conventional interventions or divert

investment from the latter.

Findings from the iSupport-Portugal studies

suggest that there are multiple caregiver profiles that

may prefer and benefit more from face-to-face

interventions, online interventions, or a combination

of both (Teles, Ferreira, et al., 2022a). Most

caregivers did not favour online interventions as a

stand-alone support but rather as an adjunct care.

Caregivers who valued self-personalisation, self-

monitoring, shorter sessions, and exhibit reluctance in

sharing their feelings with others had more positive

attitudes towards online interventions, suggesting a

profile of users who may benefit the most from them

(Teles, Ferreira, et al., 2022a). Caregivers have also

expressed that online interventions can serve as a

gateway to conventional ones, particularly for

caregivers who have recently become aware of the

dementia diagnosis (Teles, Paúl, et al., 2021).

vi. Online interventions cannot simply replicate

face-to-face formats.

With the proliferation of online interventions,

especially during the COVID-19 pandemic, there has

been a tendency to emulate face-to-face schemes both

in intervention delivery and research methodology

(see section 4.3). However, findings from iSupport

studies suggest that transferring face-to-face

intervention models to online formats can result in

long sessions with limited interactivity, which may be

an unfitting format for online interventions. Online

resources are typically consumed quickly and

dynamically, with users spending minimal time on

web pages (Liu et al., 2010). Designing online

interventions requires a more nuanced approach than

simply mirroring in-person programmes. It

necessitates a user-centred and interdisciplinary

approach that integrates clinical expertise with

interaction design knowledge.

vii. Trade-offs in the design of eHealth

programmes are often challenging.

Insights from iSupport studies highlight the

consistent value caregivers place on easy-to-navigate

interfaces, plain language, personalisation,

interactivity, feedback, and self-monitoring features

of eHealth interventions (Teles, Ferreira, et al.,

2022a; Teles, Paúl, et al., 2021). For example,

customisable content on iSupport, tailored to include

in-text references to the name, gender, and kinship of

the PwD, enhanced the sense of engagement.

Additionally, interactive and immediate feedback on

caregiving scenarios was praised for promoting

insights (Teles, Paúl, et al., 2021). Theoretical

discussions on feedback (immediate vs. delayed)

have persisted across learning theories,

demonstrating the complexity of the issue. iSupport

aligns with extensive research on learning (Metcalfe,

2017), utilizing immediate corrective feedback for

skills training.

On the other hand, participants in the iSupport-

Portugal studies showed inconsistencies regarding

features such as remote advice from health or social

support professionals (Teles, Ferreira, et al., 2022a;

Teles, Paúl, et al., 2021). While many caregivers

endorsed online communication with professionals,

others expressed concerns about receiving generic

advice that may not adequately address the

complexities of their individual cases. Our research

suggests that individuals with longer caregiving

experience tend to prefer self-guided interventions

over professional mediation (Teles, Paúl, et al.,

2020). Among caregivers valuing professional

guidance, the convenience of eHealth interventions is

also highly regarded. However, these preferences

may conflict, as professional guidance often requires

coordination of schedules and plans between

caregivers and professionals. From a pragmatic

standpoint, self-guided interventions allow for rapid

expansion of support at a lower cost compared to

interventions that rely on professional or volunteer

guidance (Blom et al., 2015).

Also from a cost perspective, iSupport was

intentionally designed to rely primarily on text-based

content, necessitating less investment in country-

specific adaptation than multimedia resources.

iSupport-Portugal: Challenges and Insights in Designing a Web Platform for Intervention and Research on Informal Dementia Caregivers

However, we concluded that incorporating visual,

auditory, and interactive elements into eHealth

programmes not only caters to users' abilities,

preferences, and learning styles but also enhances the

overall experience, making it more enjoyable,

engaging, and accessible (Teles, Paúl, et al., 2021).

Another trade-off is the flexibility of the

intervention: while fully customisable schedules that

allow users to define their lesson plans have been seen

as a means of minimising attrition (Teles, Ferreira, et

al., 2022b), questions remain about the minimum

intervention delivery required to observe clinical

effectiveness (Teles, Ferreira, et al., 2022b).

It was also to minimize dropouts that reminders

were implemented for iSupport-Portugal. However,

we have learned that for some users, reminders were

perceived as anxiety triggering (Teles, Ferreira, et al.,

2022b), suggesting the need to consider the mental

costs of notifications and the imperative to redesign

digital environments with well-being in mind.

User-centred design is crucial for making

decisions about these trade-offs, and users should be

involved from the beginning of technological

development to avoid the costs of corrective measures

at later stages.

4.2 Ethics and Data Privacy

In our efforts to ensure ethical and secure data

collection for iSupport-Portugal, we have

encountered several challenges.

i. Academic institutions need to improve their

capacity to address privacy issues in a timely and

effective manner.

While institutions are increasingly attentive to

data privacy regulations, they may lack the resources

to handle the diverse requests and categories of

personal data involved in projects. This can lead to

project deviations that need to be justified to funding

bodies. Ethics committees often rely on the opinions

of data protection officers (DPOs), which makes the

overall process cumbersome. Additionally,

researchers may lack knowledge of data protection

procedures and terminology, making it difficult to

communicate with DPO personnel. Institutions

should prioritise the establishment of clear data

protection procedures and guidelines, and the training

of researchers to navigate those procedures. In

parallel, they need to reinforce DPO teams and their

capacity to engage effectively with projects.

These challenges were encountered during the

development of iSupport-Portugal and led to delays

in its public launch, which were only mitigated by the

early initiation of processes and strategic

partnerships.

ii. Guidance on collecting e-consent is necessary.

iSupport-Portugal studies relied on data collected

entirely online, like other international iSupport

research (Mehta et al., 2018). While this approach

enables large-scale and geographically diverse data

collection with minimal resources, it also presents

challenges, particularly regarding online consent

procedures. Without direct contact with participants,

confirming identity, ensuring comprehension of study

information, and ability to give consent becomes

difficult. In iSupport-Portugal studies, a

comprehension test was implemented to ensure

understanding of the study information. However, the

lack of guidance on e-consent is evident, highlighting

the need for further discussion on this issue.

Additionally, the user-friendliness and accessibility

of information provided to participants on eHealth

platforms regarding their personal data is crucial, as

concerns about data misuse or security threats may

deter users from engaging with such platforms.

iii. The awareness of navigation tracking can

influence self-determination.

In iSupport-Portugal studies, some caregivers

reported that their awareness of being monitored,

such as through user logs tracking their programme

usage, could influence their decisions on how to

engage with the programme, i.e., pressure to increase

programme usage (Teles, Ferreira, et al., 2022b;

Teles, Paúl, et al., 2021). In traditional face-to-face

interventions, social desirability towards the

facilitating professional is commonly observed unlike

in online non-mediated interventions. However,

among some iSupport-Portugal users, there was a

perception of being observed, a phenomenon

increasingly scrutinised in digital technology usage.

This perception can trigger affective responses, either

positive or negative, potentially influencing users'

tendency to conform and limit their autonomy

(Lefkeli et al., 2022). Assessing this perception could

yield valuable insights into its effects, whether

positive (e.g., feeling secure) or negative (e.g., feeling

anxious), among users of iSupport-Portugal and other

eHealth interventions.

iv. eHealth interventions may still be targeting a

niche of users.

eHealth interventions may have a dual impact on

health inequalities. While they can enhance access to

services and information, thereby reducing

information asymmetries (e.g., information held

ICT4AWE 2025 - 11th International Conference on Information and Communication Technologies for Ageing Well and e-Health

exclusively by professionals), they may also

exacerbate disparities between digitally literate and

non-literate individuals. Benefiting from these

interventions requires not only digital skills but also

eHealth literacy, i.e., the ability to understand, and

use online health information. Lack of digital literacy

and eHealth literacy disproportionately affects older,

less educated, and economically disadvantaged

populations (OCDE, 2011). iSupport-Portugal studies

indicate that the programme has primarily reached a

niche of highly educated and professionally active

caregivers (Teles, Ferreira, et al., 2022b). However,

as internet usage trends evolve and the digital divide

narrows, eHealth programmes like iSupport may

reach a broader spectrum of caregivers. Ultimately,

both face-to-face and online interventions exclude

certain caregiver segments, such as employed

individuals in the former case and the digitally

illiterate in the latter. Therefore, it is crucial to offer

diverse intervention options.

Additionally, the significant registration of

professionals on iSupport-Portugal (47.7%), indicates

their interest in using it as a tool for intervention with

digitally illiterate caregivers. This use of the

programme with professional mediation warrants

further research, as iSupport-Portugal has thus far

been studied only in its self-managed mode.

4.3 Research Design

In studying the feasibility of iSupport-Portugal,

several challenges were identified.

i. The timing of follow-ups in eHealth

interventions should be informed by a thorough

analysis of usage patterns.

Follow-ups in RCTs of eHealth interventions

often mirror the timing of face-to-face interventions.

International studies of iSupport have typically

scheduled follow-up assessments at 3 and 6 months

after baseline, in line with the usual duration of face-

to-face psychosocial interventions of around 12

weeks (Mehta et al., 2018; Yamashita et al., 2022).

However, in the iSupport-Portugal feasibility study,

we observed an intensive pattern of use, with a

median of 13 lessons completed in just two weeks,

after which the usage curve begins to decline (Teles,

Ferreira, et al., 2022b). This finding indicates that a

3-month post-test evaluation may be too late.

Therefore, patterns of use need to be analysed before

defining follow-up schedules for RCTs.

In addition, conventional follow-up may be

impractical unless access to the e-programme is

revoked, as users may continue to engage with the

intervention.

ii. Personalised intervention plans are desirable

but challenging for research.

Self-directed e-interventions such as iSupport-

Portugal allow for personalised training, a desired

feature in eHealth interventions (see section 4.1).

However, this introduces variability into the

intervention pathway, making it difficult to replicate

and determine effectiveness. Implementing a per-

protocol analysis to counterbalance an intention-to-

treat protocol is challenging due to the variable

number and combination of lessons resulting from

personalised plans. The number of hours required to

meet the needs of a caregiver varies, making the

application of standard rules to the intervention

pathway arbitrary. Emphasizing adherence to best

practices in RCTs, an intention-to-treat approach

emerges as the most practical or perhaps the sole

viable solution to address this issue.

iii. Defining a comparator to measure the

effectiveness of eHealth interventions is not

straightforward.

While a classic research question is whether

online interventions are as effective or more effective

than traditional face-to-face interventions, iSupport

studies have shown that individuals with different

profiles or at different caregiving stages may prefer

different intervention modalities (Teles, Ferreira, et

al., 2022a). Comparing both intervention modalities

requires enrolling only digitally literate caregivers to

ensure that they can use the intervention regardless of

which group they are randomised to. This limitation

may affect the external validity of such studies and

poses challenges when comparing eHealth with face-

to-face interventions. Studies comparing these types

of intervention need to consider their implications and

discuss their limitations, to ensure that resources are

not inappropriately diverted from non-digital

approaches. For iSupport-Portugal, as there is no

standard of care for psychosocial support for

caregivers in the country, a minimal education-only

e-book was chosen as the comparator (Teles, Ferreira,

et al., 2022b). Compared with a passive/waiting list

control group, this allowed weekly reminders to be

maintained in both conditions (iSupport and e-book)

without introducing a follow-up bias, where effects

can result at least partially from different interactions

with both groups besides the intervention itself. To

avoid follow-up bias, similar prompts, whether

reminders to improve retention or other forms of

contact, need to be extended to the control group.

iv. The generalisability of conclusions drawn

from eHealth interventions is often challenging.

iSupport-Portugal: Challenges and Insights in Designing a Web Platform for Intervention and Research on Informal Dementia Caregivers

eHealth interventions often attract a niche group

of participants, making it difficult to generalise

results. In the iSupport studies, there is an over-

representation of highly educated and employed

caregivers (Teles, Ferreira, et al., 2022b). In addition,

recruitment for usability studies often succeeds in

attracting early adopters of digital innovations, which

may lead to overly optimistic conclusions. While we

were able to recruit a diverse profile of testers for the

iSupport-Portugal usability studies, capturing such

diversity was time-consuming (Teles, Paúl, et al.,

2021). Strategies such as working with user

associations to build a pool of potential testers are

useful to minimise these issues.

v. Components of eHealth interventions evaluated

in RCTs often lack continuity.

iSupport was originally designed as a self-

managed programme and was evaluated as such in the

iSupport-Portugal feasibility study (Teles, Ferreira, et

al., 2022b). However, in many cases, RCTs of

eHealth interventions include mechanisms to reduce

attrition, such as reminders or professional chats,

which are often discontinued after the trial is

completed. This may lead to overly optimistic

conclusions about programme effects if these effects

are at least partly due to such components. Finally,

technological advances and iterative changes

commonly implemented in eHealth interventions can

challenge the long-term relevance of RCTs. Study

updates may be required more often than in other

fields.

4.4 Exploitation of Platform Data for

Research Purposes

In exploring the feasibility of using iSupport-Portugal

as an RMT to collect data for dementia care dyad

research, several insights were gained.

i. Ensuring the quality and integrity of platform

data is challenging and overlaps with design features.

iSupport-Portugal required significant effort from

a multidisciplinary team to improve the technical

capabilities of the platform for efficient data

collection, storage, export and visualisation. Design

decisions such as form field options (e.g. calendar or

numeric entry for a date) can affect data accuracy but

are not always obvious to designers, developers or

researchers, often leading to multiple iterations and

potentially invalid or wasted data. There is a growing

need for researchers and developers working with

eHealth interventions to develop skills in online

psychometrics.

ii. The psychometric properties of measures

administered online are often not well described.

iSupport-Portugal has been designed to collect

data remotely from caregiver-PwD dyads over time,

using a combination of validated and newly

developed self-report instruments. This approach

facilitates nationwide assessments of caregivers with

minimal resources. However, challenges arise from

factors such as lack of control over the assessment

environment, surrogates completing measures, and

participant understanding of questions. In addition,

managing multiple activity logs (e.g. considering the

first spontaneous response or the final response in

multiple clicks) and addressing potential variations in

the psychometric properties of scales used in an

online format are issues to be considered. While there

have been discussions about the psychometric

properties of scales administered online versus on

paper (APS Tests and Testing Expert Group, 2018),

here is a general lack of guidance on the

implementation of scales online or the psychometric

implications of doing so. Given the increasing

prevalence of online research, addressing these issues

is more important than ever.

iii. Remote data collection requires additional

efforts to identify unwanted profiles.

Although iSupport-Portugal is intended for

informal caregivers, initial testing revealed that health

and social care professionals were creating dummy

profiles to use the programme as an intervention tool.

While this reflects professional interest, these dummy

profiles affect the quality of the research data. To

address this, registration steps and filtering questions

were introduced into iSupport-Portugal to better

identify different user profiles, albeit at the cost of

increased response burden.

iv. Using an eHealth platform for predictive

research requires mechanisms to maintain user

engagement.

iSupport-Portugal's potential to monitor

caregivers over time depends on maintaining user

engagement with the platform. To prevent it from

becoming a one-time visit site, investment in user

retention is needed, including the addition of features

such as social networking or gamification.

v. Creating an automated workflow for data

extraction, preparation and data quality checks is time

consuming.

It is vital to have a curated and updated dataset

that not only enables research, but also adds

functionality to the platform, e.g., profiling caregivers

ICT4AWE 2025 - 11th International Conference on Information and Communication Technologies for Ageing Well and e-Health

100

to provide user-centred interventions and increase

user retention; outcome prediction for targeted

interventions; and provide feedback for the

improvement of the platform’s design and data

collection. While there are inherent challenges in the

process of building and maintaining a curated dataset,

the benefits go beyond the research effort to influence

the usability and effectiveness of iSupport-Portugal

and similar platforms.

5 CONCLUSIONS

eHealth interventions have gained popularity in

healthcare delivery, offering benefits such as

improved accessibility and scalability. Similarly,

RMTs offer an affordable and non-intrusive way to

collect data remotely through web platforms, mobile

apps, sensors and wearables. They enable large-scale

and geographically unrestricted studies to be

conducted cost-effectively, eliminating the costs

associated with face-to-face data collection. RMTs

can be particularly useful for research aimed at

designing timely interventions, such as those aimed at

supporting caregivers of people with dementia.

However, these advances also present ethical,

technological and research hurdles. Several

challenges and lessons have emerged from numerous

studies on iSupport-Portugal, a platform used to

support informal dementia caregivers and collect data

on dementia care dyads. In a nutshell, these findings

highlight the need for innovation in the design,

implementation and research (especially on

effectiveness) of eHealth interventions and RMTs.

Simply replicating traditional procedures and

methods may prove insufficient.

The lessons learned from the deployment of

iSupport-Portugal are relevant for international

researchers, practitioners, developers and designers

involved in the implementation of digital solutions for

caregivers of PwD and other target groups. There is

an urgent need to develop guidelines that address the

ethical, technological and methodological

complexities of the field to fully realise the potential

of eHealth interventions and RMTs.

ACKNOWLEDGEMENTS

The author(s) declare financial support was received

for the research, authorship, and/or publication of this

article. This work was funded by the National Funds

through FCT—the Portuguese Foundation for

Science and Technology, I.P., in the scope of the

project “iSupport Footprint” [ref. 2022.07587.PTDC;

https://doi.org/10.54499/2022.07587.PTDC].

The authors thank the World Health Organization

(WHO) for granting the licence to use, reproduce,

publish and display the iSupport programme. The

authors would also like to thank the national

organisations that support the dissemination of

iSupport-Portugal and the caregivers who

participated in this research.

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