Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: Qualitative Study Among Formal and Informal Caregivers

Abstract

Background Due to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia. Objective The objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia. Methods A combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn. Results Formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context. Conclusions Despite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.

Factors Influencing Implementation of eHealth Technologies to Support Informal Dementia Care: Umbrella Review

“…We found that privacy and ethical issues were frequently mentioned as a barrier in relation to this type of technology; however, ways to overcome this barrier have mostly been unaddressed. In a previous study among potential users, we found that artificial intelligence–driven monitoring systems particularly require introduction in a way that prevents caregivers from feeling undervalued [ 50 ]. We have published a set of requirements that can benefit the development and introduction of in-home monitoring technologies aimed at supporting home-based dementia care [ 50 ].…”

Implementation of Unobtrusive Sensing Systems for Older Adult Care: Scoping Review

“…For older adult care, it is important to monitor activities that are relevant to various stakeholders. For example, a system that can unobtrusively detect what a person is typing on a keyboard is of no use for older adult care, whereas systems that can unobtrusively monitor falls, personal hygiene, and sleep patterns are more useful for older adult care [ 9 ].…”

“…The system will be more acceptable if it measures the behaviors that are in line with the needs of stakeholders and are part of the daily routine of the older adults. From the results of a qualitative study among formal or informal caregivers of persons with dementia, it can be concluded that sensing technology should be used to monitor the risk of falls, personal hygiene, nocturnal restlessness, and eating and drinking patterns [ 9 ]. In accordance with the routine dimension of the conceptual framework, if the system is unobtrusive, it will not impact the daily routine while using such monitoring devices.…”

“…Translation: in older adult care, activities monitored are of interest and value from the perspective of stakeholders such as formal or informal caregivers, older adults, and involved organizations (such as older adult homes and participating companies). Therefore, studies that monitor activities relevant to older adult care are more appropriate [ 9 ].…”

“…Owing to this, detrimental effects on the physical, emotional, and social well-being of caregivers have been observed [ 5 , 6 ]. Thus, to provide continuous care without burdening informal caregivers and adhering to the needs of older adults, intelligent in-home monitoring technological solutions are proposed and demanded [ 7 - 9 ].…”