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Requirements for Unobtrusive Monitoring to Support Home-Based Dementia Care: A Qualitative Study among Formal and Informal Caregivers
ABSTRACT
Background:
Due to a growing shortage in residential care, people with dementia (PwD) will increasingly be encouraged to live at home for longer. While extended independent living is preferred by PwD, it also puts more pressure on both the informal and formal care network. To support (in)formal caregivers of PwD, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor lifestyle, health and safety of PwD. These solutions will, despite their potential, only be viable if they meet the expectations and needs of formal and informal caregivers of PwD.
Objective:
The objective of this study was to explore expected benefits, barriers, needs and requirements towards unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling PwD.
Methods:
A combination of semi-structured interviews and focus groups was used to collect data among informal (N=19) and formal (N=16) caregivers of PwD. 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:
Results showed that formal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should especially 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 selfcare information, extended independent living, objective communication, prevention and pro-active measures, emotional reassurance and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. At the same time, 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 PwD 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 taken into account. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.
Citation
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Copyright
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