A lifestyle monitoring system to support (in)formal caregivers of people with dementia: Analysis of users need, benefits, and concerns

Abstract

Introduction Dementia is a syndrome that predominantly affects people in old age. Many older people with mild to moderate dementia live at home alone. When dementia poses problems, they must rely on informal caregivers, who have lives of their own in other places, as well as on professional home care organized by case managers. Assistive technologies, such as lifestyle monitoring, are being developed to assist informal caregivers and case managers by making remote caregiving possible. In a study conducted in the northern Netherlands, people with dementia were provided with a lifestyle monitoring system consisting of activity sensors in the home connected to an online platform. This study is intended to generate insight into needs, benefits, and concerns relating to a lifestyle-monitoring system to help informal caregivers and case managers provide care to people with dementia who are living alone. The key research questions are as follows: Which needs, benefits, and concerns are reported by informal caregivers and case managers who use lifestyle monitoring? What does the collected information indicate about the adoption of lifestyle monitoring? Methodology In the study, 63 lifestyle-monitoring systems were installed in 63 homes of people with mild to moderate dementia who were living alone. We guaranteed that the system could be used without charge until the end of the trial. We conducted telephone interviews with informal caregivers (50) near the date on which the system was installed, and again when it had been in use for approximately 300 days (41). We also interviewed case managers (13) at the beginning and at the end of the project (7). Each interview lasted about 30 minutes and consisted of closed and open questions about topics including expectations, experiences, quality of life, and care. The study took place in the rural area of the northern Netherlands from February 2015 to June 2016. Four homecare organizations provided lists of participants to include in the study. Results/conclusion The results indicate that informal caregivers perceive lifestyle monitoring as a support tool that fills a need in the provision of care for people with dementia and that its benefits outweigh the concerns. Lifestyle monitoring makes it possible to expand the informal care network such that care duties can be shared among more people, thereby relieving informal caregivers of a sense of constant responsibility.