Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person’s memory, thinking, learning skills, and the ability to perform activities of daily living (ADLs) [1]. Currently, dementia affects 47 million people worldwide, and these numbers are expected to increase to 75 million by 2030 and 132 million by 2050 [2]. A diagnosis of dementia has a significant impact on family members of people with dementia (PwD), who often bear the responsibility of caring for them as they deteriorate [3]. These family members, usually a spouse or a child, are often referred to as informal caregivers, as they offer continuous unpaid assistance, in contrast to formal caregivers, who offer paid professional services [3]. Informal caregiving can help to maintain the PwD at home, avoiding institutionalization and providing the Aging in Place model of care; avoiding nursing home placement; and contributing to an increase in well-being, independence, social participation, and healthy aging [4].

Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of PwD and their informal caregivers, thus facilitating dementia care and living [5,6]. This is the case for Connected Health (CH), a model of chronic care delivery facilitated by technology where all the stakeholders involved in a person’s care are connected through a health portal that provides a continuous and efficient flow of information between them [7]. The concept of CH has gained attention among dementia researchers, as it has shown positive results in helping informal caregivers in their delivery of home care for the elderly [8,9]. Using a wide variety of technologies such as body-worn and monitoring devices, CH can help the informal caregiver in their caring duties through the continuous monitoring of the health status of the PwD at home, alerting them to changes in the PwD and their environment (such as falls or any other emergency event), and facilitating communication with health care professionals (HCP) when needed. CH-driven interventions could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with reliable information and social and emotional support as well as enhancing information exchange with other caregivers and HCPs, facilitating the informal caregiver the decision-making process for matters concerned with PwD care [10]. The literature also suggests that many of these types of technology-driven interventions are designed to provide well-being to informal caregivers, helping to ameliorate the levels of burden and stress they can feel derived from their caring process [11]. Similarly, technology applied for dementia home care might play a role in PwD monitoring and disease decline prevention through the detection of changes in the PwD ADLs performance or physical parameters, alerting the caregiver and the HCP to act in advance and prevent further complications (eg, falls prevention, disease relapse, or hospitalization) [11]. At the same time, these technologies aim to empower the informal caregiver and increase their confidence and self-efficacy in their care role, improving the quality of life (QoL) and well-being of PwD and their informal caregivers [10]. An excellent example of a combination of patient home monitoring and informal caregiver support is the ALADDIN project, conducted by Torkamani et al. in 2014 [12]. ALADDIN is a digital platform designed to offer support to the informal caregiver through the provision of information (Television and Social Networking), a communication tool with formal carers (Contact us), and a distant monitoring feature (My tasks) where the informal caregiver had to complete a questionnaire that gathered information about the PwD health. It was tested in a multisite randomized controlled pilot study with 30 community living informal caregivers of PwD. The intervention and control groups were assessed at baseline, at 3 months, and at 6 months in terms of burden depression and QoL for the caregiver and for cognitive and disease stage, functional disability, comorbidities, and QoL for the PwD. The authors reported a significant improvement in the QoL of the carers in the platform group, with some reduction in caregiver burden and distress, and that the platform was useful in monitoring the PwD and facilitating contact with other professionals. In addition, caregivers and clinicians rated the access to and use of the ALADDIN platform positively. The success of studies such as this supports further testing of the utility and the value of technology interventions in other dementia cohorts, but they need to be studied for more extended periods to investigate the true impact that it can have on the PwD care. Furthermore, the addition of technology devices and wearables to monitor the vital signs of PwD can be a facilitator in this remotely telemonitoring process.

On the basis of the literature knowledge, this study aimed to create a well-being profile of the PwD–informal caregiver dyads involved in Connected HEalth Sustaining home Stay (CHESS) in dementia project, a CH study, to help to report their progression during their year of involvement in the study to see if there was any impact on it because of the use of a CH platform for home care.

CHESS is a CH longitudinal cohort study that took place in the University College Dublin (UCD, Ireland) between the beginning of 2016 and the end of 2019. The project aimed to (1) evaluate the effectiveness of a CH platform in supporting informal caregivers of PwD at home, compared with usual care; (2) study the impact of CH on dementia home care, in terms of the potential improvement of the PwD and their informal caregivers’ physical and mental health and QoL; and (3) to determine the CH platform’s usability and user experience from the informal caregivers’ perspectives. The full CHESS project protocol has already been published [13]. The CH platform works on a tablet computer (Samsung Galaxy Tab A 10.1, 2016) and is connected to a series of PwD monitoring devices for home use, including a blood pressure (BP) monitor (Omron M6 by OMRON Healthcare Ltd), an electronic weighing scale (Withings, France), and an activity and sleeping tracker (Withings Go). The platform provides 4 features to the informal caregivers: an educational section with information and videos from dementia experts offering advice about daily care; an assessment module with daily questionnaires for the informal caregivers that collects health-related information about themselves and the PwD (in the case of PwD, data on their mood, nutrition, activity, bowel movements, and medication compliance are collected; for caregivers, surveys on their mood, energy levels, sleep quality, and anxiety levels are conducted); a diary for the caregivers to keep track of events, with summary reports of changes in the PwD care plan; and a dashboard with an overview of the PwD activity levels, sleep patterns, BP, and weight, recorded by the monitoring devices. The encrypted platform securely connects all the key stakeholders involved in PwD’s care (ie, informal caregiver, general practitioner, public health nurse, and hospital geriatric services). As mentioned earlier, the generated data are presented on the platform and made available for the informal caregivers and HCPs as an objective measure of the PwD’s health status. Figure 1 shows a representation of the CH platform components. Screenshots of the platform interface, sections, and devices can be found in Multimedia Appendix 1.

A preliminary subjective feedback study was conducted from a sample of our participants. This preliminary study showed that their initial impressions about what the CHESS platform could offer to them to improve their delivery of home care for the PwD did not correspond with what they found. In the beginning, they considered the platform as a tool to enhance their caring tasks and to improve their self-efficacy. After the deployment, they considered the platform to be more helpful for research than for themselves. This study has already been published, and more information about these informal caregivers’ subjective experience can be found in the manuscript [14].

In this study, we aimed (1) to create a multidimensional profile for evaluating the progression of the well-being of PwD–informal caregiver dyads during their use of the CH platform and their involvement in the CHESS study (1 year) and (2) to conduct a long-term follow-up using the proposed well-being profile, including different time-interval evaluations.

This study reported a longitudinal quantitative analysis of the well-being of PwD-caregiver dyads that were involved in the CHESS project during a year’s time, using a well-being profile created for the occasion.

A total of 11 PwD–informal caregiver dyads were recruited. The informal caregivers had a reasonable balance between females and males (6/11, 54% female vs 5/11, 45% male), with an average age of 69.27 (SD 13.14) years. Most caregivers were spouses of the PwD (8/11, 72% cases), having been a dedicated caregiver for the PwD for an average of 3 (SD 2.69) years. Most of the informal caregivers were retired (8/11, 72% cases). In terms of the PwD they were caring for, there was a reasonable balance between genders (6/11, 54.5% female vs 5/11, 45.5% male), and the PwD had an average age of 75.09 (SD 10.13) years. The majority of the PwD had vascular dementia (4/11, 36%) or a nonspecified type of dementia (4/11, 36% cases). All the PwD were living at home with their informal caregivers. At enrollment time, the mean MMSE score was 24.10 (SD 3.66), indicating mild dementia, and the mean DAD score was 74.64 (SD 27.76). Tables 4 and 5 provide further details of the participants.

The findings from our study suggest that in the majority of measurement outcomes analyzed, there were no significant changes in the PwD or their caregivers’ well-being over the year of follow-up when analyzed as a group. The only instances in which statistically significant changes were observed were a worsening in the functional status of the PwD (using the DAD scale) and a slight improvement in sleep quality for their caregivers (using the PSQI scale). However, in each of these 2 measures, post hoc pairwise comparisons did not indicate any evidence of statistically significant scoring change between the 3 monthly time intervals. This is not unexpected because the small number of participants and the accompanying lack of statistical power limit the statistical inference in this study design. Furthermore, given the observational nature of the study, we cannot attribute that the changes observed were related to the deployment of the platform. However, this lack of statistical significance does not automatically mean that the CHESS platform and its continuous monitoring could offer some advantages in disease progression and disease pattern detection in the long term. When we looked across the individual cases, the results were very varied for each dyad, with no common pattern, but these results support the potential value of individual-level monitoring. As with the group results, we lack evidence to conclude that any of these changes were because of the introduction of the CHESS platform.

The novelty of our work relies on how we approached the PwD and their informal caregivers’ well-being. On the basis of the WHO ICF framework, we have built up a multidimensional profile of the PwD and their informal caregiver to analyze the impact that the health platform could have on their well-being. This could be validated in the future and used as a standard tool to conduct the same analysis with other different s-Health technologies for PwD and their informal caregivers. Furthermore, it is the first time, to our knowledge, that the PwD-caregiver dyad well-being is measured through different outcomes, as usually follow-up studies focus on one single variable measured at different time points [30,31].

Furthermore, as cognition deteriorates, it is more challenging to assess PwD well-being; however, in our study, we used both self-reported and proxy-reported assessments to evaluate how the same situation can be perceived discordantly by the PwD and the caregiver, giving more strength to it. Another strength of our study relies on the time-interval analysis conducted. Measuring the same outcomes, with the same tools, and at a higher frequency during an extended observation period allows us to build up a better outline of a population or an individual and its fluctuation over time. This could provide an opportunity to study some external factors that may influence these variations in time.

Our findings for our PwD–informal caregiver dyads’ well-being progression are in line with similar previous studies in the field, which found that their PwD population did not suffer a significant QoL change during the time they were followed up [30,32]. This is consistent with the literature, which reports that PwD have a progressive adaptation to their cognitive and functional decline, assimilating their limitations and continuing to have positive experiences [33]. The same adaptation is described in the literature for informal caregivers, who do not increase their levels of burden or strain despite the progressive decline of the PwD [34].

Many reviews and meta-analyses have investigated the potential benefits that different types of nonpharmacological interventions can have in the well-being of PwD and their informal caregivers, reducing their levels of burden and depression and improving their QoL, positive affect, physical activity, and self-efficacy, thus having a positive impact on the care recipient [35]. Despite this, they all have something in common: their results do not provide enough evidence to support their use [36]. One of the main reasons that these works argue for that lack of evidence is that there are many different types of studies, including psychoeducational interventions, cognitive behavioral therapy, counseling, support and management, respite, training for the caregiver, or physical health promotion, to name a few. This wide variety of interventions leads to difficulties in comparing the different types of studies [36]. In addition, most of these studies have been found to lack a proper scientific methodology, with different scopes, content, and outcome measures, which decreases their quality and leads them to a lack of evidence [35]. The same issue is noted in the case of technology interventions aimed at improving the PwD’s and their informal caregivers’ QoL. Despite recommending the use of these newly developed technology interventions for improving the well-being of PwD-caregivers at home, the reviews conducted do not provide strong support and claim a lack of evidence in the studies included, arguing having found the same methodology and consistency issues in them [10,37]. Authors in the field claim that there is a need for improvement in the quality of these interventions and that more longitudinal studies need to be conducted to provide evidence of the effect that these interventions can have in the long term [36].

There are some limitations to our study. Despite conducting nonparametric tests, the results cannot be extrapolated to the population because of the small number of participants included. In addition, our PwD sample was quite heterogeneous in terms of the dementia diagnoses and participants’ characteristics. Therefore, our results must be considered in the context of this particular PwD group, their informal caregivers, and their personal living conditions and environment. Our study could also have benefited from a longer follow-up study, as some other studies in the literature indicate.

Another thing to consider is not including the informal caregiver QoL outcome in our study variables when it is considered in the literature as an important factor for assessing the caregiver burden related to continuous care for chronic patients.

We did not differentiate between caregivers who are spouses and those who are children of the PwD. Along the same line, we have not considered the potential impact of the PwD comorbidities in the caregiver, having described only the impact that dementia may have on them.

The follow-up of this population of PwD and their informal caregivers has shown us that disease progression and their physical and mental well-being do not undergo a significant change during the time, being a more slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD–informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population.