Leader: Maria Gabriella Melchiorre (INRCA); Other collaborator(s): UNIMIB/LEGACOOP
This task moves from acknowledging that a large share of the long-term care needs of Italy’s frailest older population is met by care workers, mostly with a migrant background, who are privately hired by Italian households, often on a live-in and/or undeclared basis. The interection between ethnical and cultural values, attitudes, traditions and skills of the caregivers with the needs of the care receivers is a key issue in the provision of adequate instruments to monitor and improve the welleing the care-giver - care-receiver dyad. This task will therefore identify key aspects that can contribute to improve the monitoring tools developed under WP2, specifically addressing the needs and resources of migrant-origin care givers. The task will also tackle relevant ethnical-related aspects of the relation to be monitored.
Preliminary clarification: WP2 Objective: ICare.IT – AvereCura online survey, aimed at primary family caregivers (formal and informal) who provide care to people with dementia, with a focus on e-health solutions to support their health and well-being. Task Objective: to contribute to the development of the monitoring tool/questionnaire used during the survey. Specifically, to provide input related to the topic of caregivers/migrant care workers (MCW) (e.g., characteristics, turnover, economic issues, ethical/cultural issues). In practice: the survey focused on informal/family caregivers, including a few aspects related to possible engaged MCWs (e.g., presence or absence, live-in/hourly, tasks performed). Inputs were thus provided with regard to the topic of caregivers in general, with contributions to the entire survey planned in WP2.
Brief description of the activities and of the intermediate results
Activity planning, weekly online partner meetings. Collaboration to the protocol/form sent to the Unibo Bioethics Committee on 30 November 2023. Approval on January 2024. Questionnaire construction for caregiver and care receiver, with inputs on some dimensions (e.g., family, caregiver burden, anxiety/depression, MCWs/badanti) and further refinements regarding caregiver needs and reasons leading older persons to access hospital. Submission of an abstract to the AGE-IT Conference, Venice, May 2024 (accepted). Collaboration to the recruitment of caregivers to be interviewed (by app, link online) by providing names/mail of Alzheimer associations (and other associations) for circulating the info on the upcoming survey.
We have created the final version of the caregiver monitoring application; the debbugging phase is over. In addition, we have continued the activity of engaging the caregiver associations.
Questionnaire construction (further draft) for caregiver and care receiver, with further refinement of some dimensions. Management and realization of a first of pilot study (timing, problems, suggestions for reducing the questionnaire). Management/realization of a second pilot study. Provision of guidelines and informed consent form (online format) for caregivers who will participate in the survey.
We proceeded with the purchase of the sensors and the part of the application was developed to download the data coming from the sensors.
We have developed the manual for caregivers.
We have carried out awareness-raising events to involve caregivers in the Ravenna and Bologna area (we have planned 3 public meetings for the period September- December) involving caregiver associations and citizens.
We have performed the final test of the entire software and hardware apparatus before starting the enrollement.
STATUS - 31/12/2024
Collaboration in recruitment of caregivers to be interviewed (online questionnaire) and overall further dissemination of information on the survey (via INRCA Alzheimer center, and colleagues/experts from other Institutions/projects). Further check and feedback of/on the final online questionnaire.
STATUS - 31/03/2025
Enrollment began nationally in January 2025. Data were collected via online questionnaires through a dedicated web platform. Caregivers living in the University of Bologna area also received wearable sensors to objectively measure physical activity, biosignals, and vital parameters.
STATUS - 30/06/2025
Further dissemination of information on the survey I.Care (AvereCura). Further collaboration to the recruitment of caregivers to be interviewed (online questionnaire).
STATUS - 30/09/2025
Further dissemination of information on the survey ICare.IT (AvereCura). Further collaboration to the recruitment of caregivers to be interviewed and monitoring of respondents (those from INRCA Alzheimer center).
STATUS - 30/09/2025
Dissemination planning.
Database of healthcare/assistance solutions for caregivers and caregiver guide on device use.
Dissemination events
Druda Y, Berardi A, Palmese F, Melchiorre MG, Socci M, Cancellieri S, Tacconi M, Babini J, Chirico I, Trolese S, Zanasi F, Ingravallo F, Chattat R, Albertini M, Silvani A, Domenicali M. Acceptability of Wearable Sensors and Online Questionnaires in Family Caregiver of People with Dementia: Preliminary Evidence from the ICare.IT – AvereCura Study. Second General Meeting Age-It, Napoli, 29-31 October 2025 (Oral presentation).
Silvani A, Bedogni G, Butt AH, Capulli E, Chirico I, Di Florio P, Druda Y, Palmerini L, Palmese F, Sicbaldi M, Socci M, Zanasi F, Chattat R, Chiari L, Ingravallo F, Melchiorre MG, Albertini M, Domenicali M. Multi-wearable sensor sleep monitoring of non-professional caregiver of patients with dementia: the Age-IT AVERE-CURA project protocol. Congresso ESRS (European Sleep Research Society), Siviglia, 24-27 September 2024. https://esrs.eu/event/sleep-europe-2024/
Gris F., Renna R., Cancellieri S., Melchiorre M.G., Paciaroni L., Raccichini A., Lamura G. A personalized app-based system to support informal caregiver of older people with dementia. Primo General Meeting Age-It, Ca’ Foscari Venice, 20-22 May 2024. https://ageit.eu/wp/convegno-venezia-2024/