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A Dashboard for Managing an Ecosystem and People With Dementia: Protocol for a Healthy Ageing Ecosystem for People
Giulio Amabili1, Elvira Maranesi1, Federico Barbarossa1
1Scientific Direction, IRCCS INRCA, Ancona, Italy.
Background:
Dementia is a syndrome characterized by a wide spectrum of symptoms and needs. There is no cure for this syndrome, which represents a major challenge to society in terms of quality of life for those affected and in terms of workload and stress burden for those who take care of them.
Objective:
The Healthy Ageing Ecosystem for People With Dementia (HAAL) aimed to improve the quality of life of both people with dementia and their formal caregivers (FCs) and informal caregivers (ICs) by providing a personalized set of devices to the person with dementia, along with a dashboard designed for caregivers to monitor and manage the older person.
Methods:
The HAAL platform comprises a dashboard that integrates, aggregates, and analyzes heterogeneous data gathered from an ecosystem of devices designed for and tested with people with dementia. The study was designed as a technical feasibility pilot to test the HAAL ecosystem in 3 countries: Italy, Taiwan, and the Netherlands, where older people with initial, moderate, and severe dementia were enrolled, respectively. The study was run in 2 stages: the alpha and beta pilot studies aimed to test the second and third prototypes of the platform, respectively.
Results:
The alpha test was conducted from March to May 2023, involving 41 end users, of which 13 were people with dementia, 13 were ICs, and 15 were FCs. The beta test was conducted from September 2023 to February 2024, involving 83 end users, of which 26 were people with dementia, 20 were ICs, and 37 were FCs. The results have been elaborated and are supposed to be published by 2026.
Conclusions:
The HAAL pilot study was an innovative feasibility study whose primary objectives were to assess reduction in care load for FCs, stress relief for FCs and ICs, and improvement in the perceived quality of life for ICs and people with dementia. The study also evaluated the usability and the acceptance of the platform. Preliminary analyses of the results showed that the HAAL platform partially relieved caregivers' stress and that the quality of life of people with dementia did not worsen over the test period.
International Registered Report Identifier (Irrid):
RR1-10.2196/59860.
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