Handling dementia at home: Insights from caregivers

Journal title RIVISTA SPERIMENTALE DI FRENIATRIA
Author/s Elisabetta Notarnicola, Simone Manfredi, Michela Meregaglia, Eleonora Perobelli, Andrea Rotolo
Publishing Year 2024 Issue 2024/2
Language Italian Pages 19 P. 43-61 File size 286 KB
DOI 10.3280/RSF2024-002004
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The article presents data from research conducted in 20222023 having the aim of analyzing the economic and social impacts of home care for dependent elderly people living in Milan area and suffering from dementia. The research focuses on families’ perspective and integrates an analysis of the care needs with an analysis of caregivers’ needs. In particular, we investigated which needs emerge from the decision to assist an elderly person at home, which of them are currently matched by the existing offering of services. We quantified the extent of the direct and indirect costs of different strategies implemented by families to handle dementia at home. The research combined a qualitative-quantitative approach, based on a sample of interviews with family caregivers having the aim of exploring the main arguments and the most relevant issues with respect to home caregiving. Starting from these, a Cost of Illness and quality of life questionnaire for the elderly and the caregiver was submitted (EQ-5D-5L and CarerQol-7D). Finally, a Discrete Choice experiment was developed to explore families’ preferences regarding the type of home services. The study estimates the real socioeconomic cost of home care for elderly people with dementia, showing how the incidence of non-healthcare costs and the share borne by the family is dominant. It also shows the extent of the impact on the quality of life of the caregiver and the elderly person, focusing on the issues of everyday life, the centrality of relationships and the physical well-being of both figures. Finally, the research marks the route of future interventions and service packages, indicating families’ preferences and quantifying the willingness to pay for solutions that present a greater intensity of care, but also a centrality of services for caregivers.

Keywords: dementia, long term care, EQ5L.

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Elisabetta Notarnicola, Simone Manfredi, Michela Meregaglia, Eleonora Perobelli, Andrea Rotolo, La gestione della demenza al domicilio: la prospettiva dei caregiver in "RIVISTA SPERIMENTALE DI FRENIATRIA" 2/2024, pp 43-61, DOI: 10.3280/RSF2024-002004