Introduction: The technology-driven solution can reduce the caregiving burden; however, the needs of dementia caregiving are unique, and attitudes towards adopting technology from the perspectives of all the stakeholders involved in dementia caregiving are unclear. This study aims to assess the acceptability and feasibility of a technology-driven platform to facilitate care coordination platform, Care4AD, from the end-user perspective. Methods: Care4AD includes three components: (1) Care4AD app: the app is used by caregivers to coordinate care, monitor physical activity, and schedule reminders; (2) Care4AD tablet: a smart tablet is used by the care recipient to display scheduled reminders; and (3) Care4AD tags: a series of wireless sensor tags attached to various objects of daily care to facilitate monitoring instrumental activities of daily living (IADL) and adherence to scheduled tasks. Stakeholders in caregiving, including 11 experts in dementia care (age: 53.3 ± 8, 73% female), 10 individuals with dementia (IWD) (age: 76.1 ± 7.3, 50% female), and 14 caregivers (age: 66.9 ± 10.6, 75% female) were interviewed to determine perceived ease of use, attitude towards use, and perceived usefulness, based on the technology acceptance model (TAM) questionnaire. Additionally, we assessed technology anxiety and concerns with data sharing by caregivers and IWD. The interviews were conducted through videoconferencing or in-person meetings. The interview was composed of open-ended questions, a demonstration of the proposed Care4AD platform, and a survey based on TAM. Results: Compared to the neutral response, stakeholders showed significantly higher acceptance (70–100% satisfied to highly satisfied, p < 0.05) for all components of the TAM. Among IWD, age (r = −0.68, p = 0.03) and for caregivers the perceived ease of use (r = 0.73, p < 0.01) were significant predictors of attitude towards using the technology. Interestingly, neither concerns about data sharing nor educational level were limiting factors in the acceptability of the system in our sample. Conclusion: Overall, the results support a high perception of usefulness, ease of use, and attitude towards using Care4AD. The key barriers to adopting such technology are the age of IWD and the caregiver’s perception of ease of use. Future studies are warranted to explore the effectiveness of such a platform to reduce caregiver stress and improve the quality of life and independence of IWD.

Care for individuals with dementia (IWD) requires constant and effective management and coordination of care delivery between caregivers and family members. The medical, psychological, social, and functional sequelae of dementia can lead to elevated stress levels for patients and their caregivers. Caring for IWD often starts early in the disease process, and patient dependence increases as the illness progress. Furthermore, dementia care imposes a significant economic burden on the healthcare system, patients, and caregivers [1]. Therefore, dementia care often leads to burnout, with an increased incidence of depression and anxiety for the caregivers [2]. There is a need for an integrated approach for dementia care to reduce caregiver burden. A robust, technology-driven solution for care management and coordination could significantly improve the quality of life for IWD and reduce the burden of caregiving, especially for caregivers who do not live with the care recipient. There is no integrated system to support self-care, assist caregivers with care coordination, and facilitate information sharing within a patient’s caregiving team.

Technology is rapidly changing the healthcare landscape. In dementia care, technology has the potential to mitigate the challenges facing the inadequate and overburdened dementia care system in the USA. Benefits of technology-based care coordination are evident in many areas, including screening, scheduling activities and assessments, accessing IWD information, facilitating communication, engaging IWD and their caregivers as a part of the health ecosystem, and improving treatment and care compliance [3‒9]. In a 2018 survey, American Association of Retired Persons (AARP) identified technologies assisting caregiving or self-care, such as smart home technologies for those of age 50+ years, as an emerging market. However, only 13% of individuals over 50 years old adopted such technologies [10]; and previous review studies also highlighted the low rate of technology acceptance and adoption among older adults [11, 12]. Although smart home technologies hold considerable promise in assisting people to age at home independently, predicting technology adoption by older people is more complex and multifactorial than simply by chronological age or health status [13]. There is a need to improve user-centeredness and develop technologies that are relevant, adaptable, and appropriate, given the built environment to promote adoption of such technologies among older adults [4].

According to the definition of “Care Coordination” by the Agency for Healthcare Research and Quality (AHRQ), “care coordination involves deliberately organizing IWD care activities and sharing information among all of the participants concerned with the IWD’s care to achieve safer and more effective care. This means that the IWD's needs and preferences are known ahead of time and communicated at the right time to the right people, and that this information is used to provide safe, appropriate, and effective care to the IWD [14].” While a few attempts have been made to use technology (e.g., global positioning system-based tracking or computer-assisted technology) to support “care coordination” [15‒17], to date there is no integrated system to support self-care, support caregivers to organize IWD care, and facilitate the sharing of information among the IWD’s caregiving team to achieve safer and more effective care.

A variety of technologies have been examined to achieve interdisciplinary communication and coordination of care for patients with chronic illnesses, including IWD [18, 19]. For instance, telemedicine aims to improve patient health by using real-time interactive communication between health professionals, caregivers, and at distant sites using audio, video, or other electronic equipment [20]. Electronic health records can promote coordinated care by allowing clinicians to readily update patient health information and distribute it to other authorized providers in disparate care settings [21]. Web-based communication tools can aid in collaborative decision making and patient-provider communication by offering a means for patients to establish goals, view test results and medications, and identify care team members [22, 23]. However, all of these technologies are limited in their ability to empower IWD to be part of the health ecosystem and do not help caregivers coordinate care using low cost, remote, interactive communication between caregivers and patients. The need is to provide an ecosystem integrating different technologies to ease the dementia caregiving burden instead of standalone technology. Therefore, identification of perspective of all the stakeholders in adopting an integrated technology-driven ecosystem becomes a crucial part of technology design and development for the caregivers.

To determine the needs and priorities of stakeholders involved in dementia caregiving for a technology-driven care-coordination platform, we presented the proposed care-coordination platform, Care4AD, to experts in dementia care, IWD, and caregivers. The Care4AD platform would allow caregivers to schedule caregiving tasks, monitor physical activity and activities of daily living (ADL), and promote self-care activities (via leisure activities such as music, eBooks, or video calling). The study objectives were to assess the feasibility and acceptability of the Care4AD platform, based on the technology acceptance model (TAM). Moreover, we elicited feedback on ways to improve the platform from the end-user perspective. Based on the constructs from the TAM framework, we hypothesized that all the stakeholders would rate satisfied to very satisfied on perceived ease of use, attitude towards use, and perceived usefulness of the proposed technology to improve caregiving tasks. We also hypothesized that caregivers’ age, gender, education, concerns about data sharing, and technology anxiety are the main barriers to improving attitudes towards use.

Participants

Individuals (age 55 years or older) with mild-to-moderately severe AD (stages 4–6e based on prescreening using Functional Assessment Staging of Alzheimer’s Disease, or Functional Assessment Staging Tool [FAST] scale [24]), who are ambulatory and live in a residential home or an independent or assisted living facility and have an informal caregiver directly involved at least 8 h a week who assists with at least one ADL, were recruited for the study. IWD and caregivers were included in the study. Participants were excluded from the study if they had: (1) immobility or inability to engage in activities that are essential for independent living (e.g., IWD with severe dementia or stage 7, based on the FAST scale); (2) a significant medical or psychiatric condition that, in the judgment of the investigators, would potentially interfere with the ability to participate in the study; and (3) major hearing/visual impairment, who may not be able to interact with the proposed care coordination platform (however, IWD or caregivers who were using hearing or visual aids were qualified to participate); (4) residence in long-term care centers, nursing facilities, skilled nursing facilities, or are receiving hospice care; (5) an inability to communicate in English or Spanish; and (6) unavailability or unwillingness of the caregiver or IWD to attend the interview. All participants signed the informed consent form approved by the Local Ethics Committee at Baylor College of Medicine approved (IRB number H46087) and the study complies with the Helsinki Declaration.

Study Design

We conducted interviews with experts, IWD, and caregivers through videoconferencing or in-person meetings. The interview was composed of open-ended questions, the proposed Care4AD platform presentation, and a survey based on the TAM. We asked open-ended questions to determine the criteria important to caregivers and IWD and understand the barriers to adopting care-coordination technology from the end-user perspective. The responses were recorded using an audio recording device and were then transcribed verbatim. These transcriptions were later evaluated by three research team members using the inductive approach to determine the priority of the criteria from the end-user perspective and report related text in the transcripts. When there was no consensus about the priority of the end-users, the third research member resolved the disagreement. The criteria from the end-user perspective were iteratively included, combined, or altered, based on the data to ensure accurate representation of ideas emerging from the meetings.

Following open-ended discussion, a trained research coordinator presented the proposed Care4AD platform and surveyed stakeholders’ responses to the TAM-based questionnaire. The survey was designed to examine the perception of usage, attitude towards adopting the technology, technology anxiety, and concerns with data sharing and ease of use. The key items of TAM were designed based on the recommendation of an experienced clinical researcher. The final designed TAM included six items for perceived usefulness (e.g., “This platform is a useful resource in managing ADL”; “Having a platform to monitor physical activity is useful”; “Photo storage/Music Library/eBooks integration betters quality of life”), nine items for perceived ease of use (e.g., “The platform seems easy to navigate”; “Staying connected by video calls/text messages seems easy”; “I find the platform cumbersome to use”), three items for attitude towards using the system and behavioral intention to use (e.g., “I would use this platform daily”; “I would need to learn a lot of things before I could use this platform”; “I would feel confident using this platform”), two items for Privacy Concern with data sharing (e.g., “I have concern about sharing my data with the circle of my family members who are contributing in caregiving”; “I have concern about sharing my data with care providers, including my doctors”), and two items to assess technology anxiety (e.g., “I am nervous using a tablet system”; “I am uncomfortable operating a tablet system”). Each question was graduated from 4 (strongly agree) to 0 (strongly disagree) on a Likert scale (online suppl. Table 1; see www.karger.com/doi/10.1159/000526219 for all online suppl. material). The total score was 88.

Care-Coordination Platform

We presented and explained the proposed care-coordination platform and prototypes, allowed the participants to interact with the different components of the Care4AD platform (sensor, tags, and the tablet), and asked for any thoughts and comments. Moreover, the experts were asked to examine the Care4AD app and its features and provide comments about functionality, architecture, and design of the app. We used guiding questions to direct interviewees to address whether the end-user would consider using the system on a daily basis and what their thoughts were with regard to integrating the technology into everyday life. In the proposed system, there are four key parts of technology (Fig. 1):

Fig. 1.

The platform includes four major components, including (1) Care4AD App, a mobile application for the caregiver to facilitate care management and coordination while also monitoring IWD’s physical activity and ADL. (2) Care4AD tablet facilitates communication with IWD (e.g., text, image, and voice) and shows the reminders to the IWD on its monitor and is voice-enabled. It serves as an electronic agenda to schedule tasks and/or confirm the execution of scheduled tasks. The tablet also works as a data gateway for all data collected in the living environment. (3) Care4AD tags to monitor IWD’s interaction with objects of interest to provide an objective method to measure ADL and adherence to scheduled tasks. (4) Care4AD sensor to monitor physical activity and transfer the data from the tags to the tablet.

Fig. 1.

The platform includes four major components, including (1) Care4AD App, a mobile application for the caregiver to facilitate care management and coordination while also monitoring IWD’s physical activity and ADL. (2) Care4AD tablet facilitates communication with IWD (e.g., text, image, and voice) and shows the reminders to the IWD on its monitor and is voice-enabled. It serves as an electronic agenda to schedule tasks and/or confirm the execution of scheduled tasks. The tablet also works as a data gateway for all data collected in the living environment. (3) Care4AD tags to monitor IWD’s interaction with objects of interest to provide an objective method to measure ADL and adherence to scheduled tasks. (4) Care4AD sensor to monitor physical activity and transfer the data from the tags to the tablet.

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  1. Care4AD tablet: The tablet would serve as a data gateway for the data collected by the various Care4AD sensors described below. It would also show reminders to the IWD that the caregiver has scheduled via the Care4AD app. The reminders would be given visually on the tablet interface, and the tablet would also enable voice reminders (including voice recognition and recording voice responses).

  2. Care4AD app: The app would be used by caregivers to plan, coordinate and manage dementia care. It would enable caregivers to easily (1) assign/schedule caregiving tasks, (2) schedule IWD reminders, (3) monitor physical activity and ADL, and (4) allow the caregivers to remotely organize music and eBook libraries. The app would be running in the kiosk mode to limit complexity.

  3. Care4AD tags: A series of small sensor tags would be attached to various objects to monitor the IWD’s interaction with these objects to provide an objective measure of ADL and to determine whether scheduled tasks are completed (Fig. 2).

  4. Care4AD sensor: A wearable sensor (worn as a pendant necklace) would monitor physical activity, collect data from the tags, and transfer data to the Care4AD tablet. The Care4AD sensor would be based on our patented, validated, and commercially available PAMSys sensor. PAMSys has been validated for monitoring daily physical activities, assessing the risk of falling, assessing sleep quality, and screening physical frailty stages and frailty phenotypes [3, 25‒32].

Fig. 2.

Care4AD platform will transform the existing household into smart homes using sensors, tablet, and mobile applications. It uses low-cost smart sensors (Care4AD tags and Pendant sensor) to monitor physical activity and life space while supporting patient privacy and autonomy with no requirement for major installation (e.g., cameras, robots, etc.). The tablet will be used as a data gateway to transfer data collected by the Care4AD sensor and tags to the cloud-based backed and will also give reminders to the IWD (the reminders are programmed by the caregiver and/or health professionals via the Care4AD app).

Fig. 2.

Care4AD platform will transform the existing household into smart homes using sensors, tablet, and mobile applications. It uses low-cost smart sensors (Care4AD tags and Pendant sensor) to monitor physical activity and life space while supporting patient privacy and autonomy with no requirement for major installation (e.g., cameras, robots, etc.). The tablet will be used as a data gateway to transfer data collected by the Care4AD sensor and tags to the cloud-based backed and will also give reminders to the IWD (the reminders are programmed by the caregiver and/or health professionals via the Care4AD app).

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Statistical Analysis

All continuous data were presented as mean ± standard error. We performed one sample Wilcoxon nonparametric hypothesis test to compare the mean of each stakeholder’s responses from the neutral response (i.e., a score of 3). The effect size was expressed in terms of proportion of participants responded satisfied to highly satisfied [33]. Moreover, a stepwise multiple regression analysis was performed to assess the contribution of age, gender, education, perceived ease of use, and perceived usefulness for IWD and caregivers. We assumed a p value <0.05 as significant to reject the null hypothesis.

We interviewed 11 experts in dementia care (age: 53.3 ± 8, 8 female), 10 IWD (age: 73.4 ± 10.2, 4 female), and 14 caregivers (age: 68 ± 10.2, 12 female) to determine perceived ease of use, attitude towards use, and perceived usefulness, based on TAM adopted for the participant’s priority and professional background of the experts (online suppl. Table 2). Additionally, we assessed technology anxiety and concerns with data sharing by caregivers and patients.

Perceived Ease of Use

Most stakeholders responded significantly higher to the questions related to the perceived ease of use of the platform compared to neutral response (i.e., score of 3). The average scores given by experts, caregivers, and IWD for perceived ease of use were 4.3 ± 0.2 (91% satisfied to strongly satisfied, p < 0.01), 4.4 ± 0.1 (93% satisfied to strongly satisfied, p = 0.01), and 4.2 ± 0.2 (70% satisfied to strongly satisfied, p < 0.01), respectively (Fig. 3; Table 1). In response to the open-ended questions, IWD (83-year-old female) remarked, “It is easy to organize the activities and appointments as the platform uses the similar layout of the calendar I am currently using to organize.” Most IWD agreed with the caregivers about the ease of using the Care4AD tablet and app design. For instance, one IWD (85-year-old female) said, “I may take some time to learn and play around a little bit, but I think I will be able to use the system.”

Table 1.

Demographic information and TAM scores of all the stakeholders (mean±SD)

 Demographic information and TAM scores of all the stakeholders (mean±SD)
 Demographic information and TAM scores of all the stakeholders (mean±SD)
Fig. 3.

All the stakeholders rated the Care4AD platform: perceived usefulness (a), perceived ease of use (b), attitude towards use (c). Additionally, caregivers and IWD scored the proposed platform for privacy concerns with data sharing (d) and anxiety associated with technology use (e). The proposed platform was rated on the Likert scale from 5 (strongly acceptable) to 1 (strongly unacceptable). An average score more than 3, representing neutral, was interpreted as acceptable to strongly acceptable.

Fig. 3.

All the stakeholders rated the Care4AD platform: perceived usefulness (a), perceived ease of use (b), attitude towards use (c). Additionally, caregivers and IWD scored the proposed platform for privacy concerns with data sharing (d) and anxiety associated with technology use (e). The proposed platform was rated on the Likert scale from 5 (strongly acceptable) to 1 (strongly unacceptable). An average score more than 3, representing neutral, was interpreted as acceptable to strongly acceptable.

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We received three types of feedback from the experts to improve the perceived ease of use. The first feedback was recommended by six experts and suggested automating management of medical appointments by connecting myChart with the platform for better convenience. One expert (M.D. in geriatrics) suggested, “Adding tasks can be labor intensive, and the platform should be connected to a pharmacy and automatically add doctor’s appointments.” On similar lines, another expert (Ph.D. in psychology) suggested, “Autofill option can make adding tasks and appointments easier for the subject.” This feedback was further supported by two caregivers and one caregiver (71-year-old wife of an IWD), who said, “The platform should be connected with myChart so that managing appointments will become easier for me.”

The second feedback was about making medication management efficient on the platform. One expert (M.D. in pulmonology, critical care) said, “Adding and managing medications are difficult to upkeep. Medications are changing too often and will be burdensome to maintain.” Therefore, managing medication over time should be improved in the platform. To achieve this, experts (Ph.D. in psychology, licensed clinical social worker [LSWC] at Alzheimer’s center, and psychiatrist) suggested color coordinating the medicines to make them easier to follow. Another advice was to use a medication label based on the patient’s needs.

The third feedback was about design of the platform. Three experts suggested minimizing text notifications and using icons, emojis, or pictures to simplify the design or respond to certain text messages. An expert (LSWC at an Alzheimer’s center) suggested that icons should act as a clue for the related task. For instance, one expert (psychiatrist) suggested providing a notification with the marker hat to accept or decline the task completion status. Moreover, experts advised increasing the size of buttons and fonts to make using them convenient for individuals having difficulties with fine motor skills or vision.

Perceived Usefulness

The average scores given by experts, caregivers, and IWD for perceived usefulness were 4.7 ± 0.1 (100% satisfied to strongly satisfied, p = 0.01), 4.5 ± 0.2 (93% satisfied to strongly satisfied, p = 0.02), and 4.5 ± 0.2 (90% satisfied to strongly satisfied, p < 0.01), respectively, indicating significantly higher perception for usefulness than neutral response (Fig. 3; Table 1).

In response to open-ended questions, stakeholders acknowledged different aspects of the platform as useful, based on their perspectives. IWD found the Care4AD useful, as it can help them to be more independent. For instance, one participant with dementia (83-year-old female) said, “It would be useful to monitor my physical activity, as it would keep me motivated to stay active.” Additionally, IWD found music and the eBook library helpful, as they spend most of their time reading or listening to music. One caregiver (53-year-old female) responded, “The feature to manage music library on behalf of the IWD is useful, as it is often challenging for IWD to decide what she wants to listen to. Additionally, voice instructions will help IWD to know what IWD is supposed to do, as often IWD get confused about the steps IWD should take in response to a regular alarm.” Another caregiver (59-year-old female) said, “Being able to remotely track activity within the home, daily activities, and medication will help me? To understand how IWD is doing and better manage my? Caregiving responsibilities as I? Often lives away from IWD.” On a similar note, a caregiver (53-year-old female) mentioned, “I want my mother to socialize more and improve her quality of life by going to all activities and training available to her, so I think that the Care4AD platform will be a good tool to help my mom remember all the tasks/activities she needs to complete per day.”

To improve the usefulness of the Care4AD platform for experts, three experts (neurologist, psychiatrist, and LCSW) proposed that the platform should generate a summary report about physical activity level, ADL of the patient, and adherence to medication regime. It would be useful for the expert to have access to such reports through email to make informed decisions. Moreover, an expert (neurologist) suggested, “The report generated should have a section with their top three questions or concerns that they can remember to share with their primary care physician at their next visit.” One common way used by caregivers and IWD to coordinate is through handwritten notes. On similar lines, two caregivers (43-year-old female and 71-year-old female) and an IWD (73-year-old male) suggested including a note section in the platform. Additionally, a caregiver (71-year-old female) suggested to add a “safety card” with necessary info for a patient, such as “don’t shower until nurse arrives”; and create a separate tasks list that does require assistance from a caregiver or aid. Including a section for notes can be useful for the caregivers and IWD to manage crucial information related to safety and contact details and better coordinate the tasks remotely.

Attitude towards Use

All stakeholders rated favorably towards using the platform, with 4.0 ± 0.2 (45% satisfied to strongly satisfied, p = 0.01), 4.1 ± 0.1 (80% satisfied to strongly satisfied, p = 0.01), and 4.1 ± 0.1 (78% satisfied to strongly satisfied, p < 0.01) scores given by experts, IWD, and caregivers, respectively, indicating significantly higher attitude towards use compared to neutral response (Fig. 3; Table 1). Among different components of the TAM model as well as demographics, the only significant predictor for attitude towards the use among caregivers was perceived ease of use (r = 0.73, p < 0.01). Moreover, attitude towards the use was not significantly correlated with age (r = −0.05, p = 0.86) and education (r = −0.19, p = 0.51) for the caregivers. For IWD only age was a significant predictor (r = −0.68, p = 0.03) of attitude towards use (online suppl. Fig. 1). Furthermore, attitude towards use was not significantly correlated with perceived ease of use (r = 0.47, p = 0.17), perceived usefulness (r = 0.49, p = 0.15), and education (r = −0.46, p = 0.18) for IWD.

We asked the caregivers if they were aware of or using any technology to better coordinate with IWD and manage caregiving responsibilities. The majority of caregivers mentioned that they were not aware of any technology and used pen and paper to coordinate with IWD. One caregiver (53-year-old female) said, “If my mother has a tool like Care4AD, then I would be a little more trusting for my mom to complete more tasks without the assistance of hospice.” Another caregiver (72-year-old female) emphasized using the Care4AD platform as it would have helped her to monitor her deceased mom’s movement outside the home. Taking a break from caregiving responsibilities or reducing dependence on hospice assistance were also the motivating factors to adopt new technology among caregivers. For instance, one caregiver (71-year-old female) said, “If this technology can reduce the caregiving burden for me, then I would love to adopt the technology to take out some time for me. I am not able to travel or take a break, as the IWD do not agree to depend on others, and I have my health issues (e.g., surgery), which limit my abilities for caregiving.” However, a few IWD and caregivers showed unwillingness to use in the future. One reason for the refusal was that the couple were staying in a nursing home, and most of their activities were managed by staff; therefore, they did not see the need for the platform. Another reason a caregiver mentioned was that the IWD was in the initial stage of dementia and was not facing any issues with care coordination.

Concerns about Data Privacy/Sharing

There were no major concerns related to data sharing. The caregivers and IWD provided a score of 1.2 ± 0.4 (90% showed no concern, p < 0.01) and 1.2 ± 0.2 (83% showed no concern, p < 0.01), respectively. They agreed to share data with stakeholders involved with their well-being. Only one IWD showed concern regarding sharing data with anyone else except his wife and primary care provider. He said, “I don’t want to bother anyone else with the caregiving responsibilities.”

Technology Anxiety

We assessed the technology anxiety-related questionnaire among three caregivers and three IWD. Caregivers were confident of adopting the Care4AD platform and scored 1.2 ± 0.2 (100% showed no anxiety, p < 0.01) on the technology anxiety scale. Participants with dementia scored 1.2 ± 0.4 (100% showed no anxiety, p < 0.01). One IWD showed some anxiety towards using the technology, as she had never used a tablet before; but this anxiety was not due to the system’s complexity.

The objective of the study was to expand the knowledge on perspectives of experts in dementia care, caregivers, and IWD about the acceptability and feasibility of a technology-driven platform to facilitate care coordination. Another aim of the study was to identify the key barriers in adopting the care-coordination platform from all the stakeholder’s perspectives. Results are relevant for researchers, healthcare, and business professionals, including product designers and developers, as technology adoption involves more than the product itself but the values it brings along. As we hypothesized, all stakeholders rated satisfied to very satisfy on perceived ease of use, attitude towards use, and perceived usefulness. However, our second hypothesis was partially satisfied as among IWD only age was a significant barrier in adopting the technology. Additionally, to improve the technology adoption at scale, more emphasis should be allocated to improving the ease of use of technology. Contrary to our initial hypothesis, gender, education, and concerns about data sharing did not have a noticeable effect on attitude towards use in our sample.

On the basis of the categories mentioned above, we conceptualized three inter-related themes that dictate the potential of Care4AD to be an effective tool to support the caregiving of IWD: (1) the value of reporting daily physical activity, with a simple and comprehensive visualization, provided as part of the proposed care-coordination platform; (2) the value of empowering patients in self-care as an integrated part of a care-coordination platform; and (3) the value of improving enjoying life and socialization as an integrated part of a care-coordination platform. These three components are explained as follows:

1. The value of reporting daily physical activity, with a simple and comprehensive visualization, provided as part of the proposed care-coordination platform.

During the interview, all stakeholders endorsed the value of monitoring daily physical activity and a summarized report about ADL of the IWD. Experts acknowledged that the proposed platform could better track subtle changes in cognitive preserve over time. Furthermore, a comprehensive summary report can assist in determining the needed support to assist people with dementia to continue to live independently at home. Currently, the functional decline in IWD is typically measured using single-time point subjective rating scales, which rely on direct observation or (caregiver) recall [34]. This will offer a complete and accurate view of the IWD’s behavior and detect changes that might indicate the worsening of dementia [35]. Galambos et al. [36] identified associations between overall in-home activity and outing patterns with dementia and depression. In a recent proof-of-concept study, Vahia et al. [37] used an Emerald device, a wifi-like device, which uses radio-wave and signals processing algorithms to track the movement of 1 patient with dementia in a residential care setting and assess her behavior in a living environment. However, Emerald is limited in range, to approximately 1,600 sq. feet with 180° of coverage. Other technologies, such as Smartwatches and GPS trackers, allow a measure of some physical activity; but they are difficult to translate into meaningful outcomes, as they do not capture detailed data on movement [38]. However, the proposed innovative sensor-based technology to assess life space and physical activity can provide continuous real-life data in a completely naturalistic way [28, 30, 32].

2. The value of empowering patients in self-care as an integrated part of a care-coordination platform.

Caregivers and IWD found it easy to use the Care4AD to organize tasks and monitor ADL. The remote access to caregivers through the Care4AD mobile app may promote self-care among IWD by minimizing the efforts required from the IWD. The value of providing remote access to caregivers is in line with the notion of “zero-effort technology,” which requires little or no effort from the patients who use it [39]. The proposed platform may promote self-care by assisting in scheduling tasks, providing reminders and feedback for ADL to the IWD. The knowledge about ADL and compliance to the prescribed treatment regimen can empower IWD to be independent and act using their knowledge in everyday decisions for health behavior [4, 40].

During the interviews, experts endorsed that the proposed technology is suitable to support self-care by (1) scheduling major care tasks (ADL monitoring) and providing reminders (ADL facilitation); (2) determining adherence to scheduled tasks in a care plan; (3) assessing the IWD’s activity response to the notification and notifying the user and/or caregivers in the case of lack of adherence; (4) building tailored instructions for each user, depending on his or her dynamically changing activity patterns and responses to prior instructions (i.e., context-aware); and (5) facilitating communication with care professionals to educate and empower caregivers in “care coordination.” Due to these reasons, dementia care experts found the proposed platform helpful in caregiving, and caregivers would adopt a system like Care4AD in the future.

3. The value of improving enjoying life and socialization as an integrated part of a care-coordination platform.

Caregivers and IWD identified music and eBook library as the most favorable features of the Care4AD platform. According to the experts interviewed in this study, the value of including music or eBook libraries can reduce the stress for patients and help manage behavioral disturbances often displayed by IWD. Typical disturbed behaviors may include psychosis and paranoia, aggression, wandering, disinhibited behavior, and sleep disturbance. Listening to music can have a therapeutic effect in managing agitated behaviors [41]. Moreover, engaging in other leisure activities such as reading or crossword puzzles can provide cognitive stimuli for IWD, as they need to remember everything they read, process unfamiliar information, and comprehend the text [42].

In a study involving 32 IWD, Holmes et al. [43] found that music had an immediate and positive engagement effect in IWD with apathy, regardless of the severity of their dementia. Another pilot study found that passively listening to preferred music effectively reduced anxiety in a population of residential care patients with dementia [44]. Even though the music may lower biological markers of stress in dementia patients, often, IWD find it challenging to search and organize their music library. Therefore, both IWD and caregivers appreciated the feature of managing music and the eBook library, as caregivers can manage the music library based on IWD preference and experts’ suggestions. Furthermore, loneliness and social isolation are known to accelerate cognitive decline. To promote social engagement among IWD, Care4AD provides an option for IWD to connect with their loved ones using video calls. IWD and caregivers found it easy to make the call using the Care4AD platform and useful, as the video call features were adapted to the need of older adults (e.g., adding pictures of the person in the contacts instead of text) [45].

Barriers in Adopting the Technology

Caregiver perception about ease of using the technology was identified as the barrier in adopting the technology. Therefore, emphasis should be given to improving the ease of use in the design phase to promote adoption of such technologies. Furthermore, older IWD were less inclined towards adopting the proposed technology. Previous studies presented two reasons for such reluctance, either because IWD do not feel the technology is suitable for them, considering stage of dementia, or because they think that their condition is not bad enough [46]. Therefore, we recommend that the early adopters could be younger IWD who are open to learning new skills for marketing such technology. Furthermore, we suggest focusing on the modular design of the technology so that the different features of the technology can be offered, based on the age of IWD and their ability to handle a complex system.

Limitations

This study has a few limitations that should be addressed. Although qualitative interviews provided a means to gather insights from the stakeholders, interviewing IWD and their caregivers can influence their response. We observed that sometimes caregivers were conservative about describing the burden associated with caregiving to avoid hurting their loved ones. Therefore, the future studies may consider interviewing and collect responses from the caregivers in the absence of IWD. Additionally, we incorporated technology anxiety and concerns related to data-sharing questionnaires in later data collection. Therefore, we could not obtain this information from all the stakeholders. However, no significant concerns over data sharing and technology anxiety were raised, based on the recorded responses.

Potential Improvement in Care4AD

While the current version of Care4AD received acceptability among all the stakeholders, there was feedback from the experts and caregivers, which can be incorporated into the future version. Caregivers suggested connecting patient appointment from the electronic medical record system (e.g., myChart appointments in EPIC), with the calendar to automatically update the schedule/appointments. Additionally, incorporating videos or pictures promoting caregiver education can assist caregivers in handling situations often faced during caregiving.

This study proposed the conceptual model of a care-coordination platform for IWD and explored factors that may affect adoption of this technology from the point of view of experts in dementia care, IWD, and caregivers. The platform adopts wearables, the internet of things (tag sensors), a companion app, and an interactive interface. These platform components facilitate scheduling daily task routines, reporting daily physical activity, facilitating communication between the circle of caregivers, and empowering IWD in self-care while engaging them in social activities. Overall, the results support a high perception of usefulness, ease of use, and attitude towards using such technology. Results suggest that the key barrier to adopting such technology is the age of the IWD and caregiver’s perception about ease of use of the technology. Future studies are warranted to explore the effectiveness of such a platform to reduce caregivers’ stress and improve the quality of life and independence of IWD.

We thank Ms. Maria Noun for her help with data analysis. We also wish to thank all participants in this study.

The Institutional Review Board at the Baylor College of Medicine approved the experimental protocol (H46087), and all participants included in this study signed written informed consent.

Bijan Najafi, the coauthor, is serving as a consultant for BioSensics LLC. However, his consultation is not relevant to the scope of this study. He was also not involved in data analysis from this study. A part of the algorithms described in this study is protected by a patent-pending application, held by Baylor College of Medicine. Bijan Najafi is one of the coinventors of this patent.

This study was funded in part by the National Institute on Aging (award: 1R44AG066360) with a subaward from BioSensics LLC and partly with the use of resources and facilities of the Houston VA HSR&D Center for Innovations in Quality, Effectiveness and Safety (Cin13-413). The funding sources had no role in study design, methods, data collection and analysis, and submission of the results. The attitudes expressed are those of the authors and do not necessarily represent those of the Department of Veterans Affairs, the U.S. government, or Baylor College of Medicine.

Ram Kinker Mishra: statistical analysis, interpretation of data, drafting the original manuscript, and critical revision of the manuscript for important intellectual content. Catherine Park: interpretation of data and critical revision of the manuscript for important intellectual content. Nesreen El Rafaei and Anmol Salim Momin: data acquisition, interviewing participants, and critical revision of the manuscript for important intellectual content. Mark Kunik and Michele K. York: interpretation of data and critical revision of the manuscript for important intellectual content. Bijan Najafi: study concept and design, interpretation of data, critical revision of the manuscript for important intellectual content, and securing funding.

The data presented in this study are available on request from the corresponding author. The data are not publicly available due to propriety reasons and need for IRB permission before sharing.

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