It is estimated that over 55 million people worldwide are living with dementia, with Alzheimer's disease being the most prevalent neurodegenerative condition globally. The number of people with dementia is expected to rise to 139 million by 2050, especially in low- and middle-income countries (WHO, 2023). Given the absence of a cure, it is crucial to focus on improving the overall well-being of people with dementia and their families through an integrated and multidimensional approach to health, as theorized by the biopsychosocial and salutogenic models. According to positive psychology and further supported by numerous studies such as WHO Report 67 (2019) and Culture for Health (2022), this can be achieved through art and culture. Participation in artistic and cultural programs has proven beneficial in many aspects. They stimulate cognitive processes and executive functions like mental planning, memory, abstraction, and decision-making. They also enhance social aspects such as cohesion, social integration, personal expression, and communication, fostering relationships, trust, self-esteem, and overall well-being. These interventions not only benefit the participants but also positively impact the dementia care ecosystem by reducing the need for medications and institutionalization. Integrating artistic and cultural programs into the spectrum of non-pharmacological interventions helps lower the overall cost and burden of dementia care on the healthcare system. This thesis aims to develop an inclusive and participatory cultural access system in the province of Reggio Emilia for people with dementia and their caregivers, enhancing emotional and psychological well-being and fostering socialization through participatory experiences in cultural institutions. The adopted methodology is characterized by an iterative process that combines ethnographic research and a participatory approach, involving actors and experts in culture, healthcare, and public administration through interviews, focus groups, co-design sessions, and prototyping activities. The field research phase identified critical issues related to the scalability and accessibility of cultural offerings, the lack of a participatory culture towards cultural heritage, insufficient training of staff to meet the target audience's needs, and fragmented cultural experiences lacking specific planning and design for dementia. From this research, MARE (Musei per l’Alzheimer Reggio Emilia) was conceived, a network of cultural institutions in the province of Reggio Emilia that offer participatory cultural and museum experiences for people with dementia and their caregivers. This service system aims to overcome existing logistical, economic, and cognitive barriers through co-designed activities tailored to the participant's abilities and interests. The goal is to ensure inclusive access to art and culture, enabling people with dementia to benefit from these experiences, and promoting the idea that active participation in the cultural and social life of the community is a fundamental right for all, moving towards a dementia-friendly society.
Si stima che oltre 55 milioni di persone nel mondo vivano con la demenza, con la malattia di Alzheimer come la condizione neurodegenerativa più diffusa a livello globale. Il numero di persone che vivono con demenza è destinato a salire a 139 milioni entro il 2050, soprattutto nei paesi a basso e medio reddito (OMS, 2023), rappresentando una significativa sfida per la sanità pubblica che richiede un'attenzione urgente e costante per migliorare le strategie di cura, supporto e prevenzione. Data l’assenza di una cura per la demenza, è fondamentale concentrarsi sul miglioramento del benessere complessivo delle persone e delle loro famiglie, con un approccio integrato e multidimensionale alla salute, come teorizzato dai modelli biopsicosociale e salutogenico. Secondo quanto affermato dalla psicologia positiva e successivamente supportato da numerosi studi come il rapporto 67 dell’Organizzazione Mondiale della Sanità (OMS, 2019) e il rapporto sulle evidenze e raccomandazioni politiche (Culture for Health, 2022), questo può essere raggiunto tramite l'arte e la cultura. La partecipazione a programmi artistici e culturali risulta benefica sotto diversi aspetti. Vengono stimolati i processi cognitivi e le funzioni esecutive, come la pianificazione mentale, la memoria, l'astrazione, e il processo decisionale. Allo stesso tempo, vengono migliorati aspetti sociali come la coesione, l'integrazione sociale, l'espressione personale e la comunicazione, favorendo le relazioni, la fiducia, l'autostima in se stessi e il benessere generale. Questi interventi non solo beneficiano chi ne prende parte, ma anche tutto l’ecosistema della cura della demenza riducendo la necessità di farmaci e di istituzionalizzazione. Pertanto, integrare programmi artistici e culturali nello spettro degli interventi non farmacologici aiuta a ridurre il costo complessivo e il carico della cura della demenza sul sistema sanitario. Date queste premesse, la tesi mira a sviluppare un sistema di accesso culturale inclusivo e partecipativo nella provincia di Reggio Emilia dedicato alle persone con demenza e ai loro caregiver, in grado di migliorare il benessere emotivo e psicologico e di favorire i processi di socializzazione attraverso esperienze partecipative nelle istituzioni culturali. La metodologia adottata è caratterizzata da un processo iterativo che combina la ricerca etnografica e un approccio partecipativo, coinvolgendo attori ed esperti nei campi della cultura, della sanità e dell'amministrazione pubblica attraverso interviste, focus group, sessioni di co-progettazione e attività di prototipazione. Dalla fase di ricerca sul campo, sono emerse criticità legate alla scalabilità e accessibilità delle offerte culturali, alla mancanza di una cultura partecipativa verso il patrimonio culturale, alla formazione insufficiente del personale per soddisfare le esigenze del pubblico target e a esperienze culturali frammentate prive di una specifica pianificazione e progettazione per la demenza. Da questa ricerca nasce MARE, Musei per l’Alzheimer Reggio Emilia, una rete di istituzioni culturali nella provincia di Reggio Emilia, capace di offrire esperienze museali partecipative dedicate alle persone con demenza e ai loro caregiver. Il sistema servizio mira a superare le barriere logistiche, economiche e cognitive esistenti attraverso attività co-progettate adattate alle capacità e agli interessi dei partecipanti. L'obiettivo è garantire un accesso inclusivo all'arte e alla cultura, assicurando che anche le persone con demenza possano goderne e trarne beneficio, promuovendo l'idea che la partecipazione attiva alla vita culturale e sociale della comunità sia un diritto fondamentale di tutti, verso una società amica della demenza.
MARE : musei per l'Alzheimer Reggio Emilia : enhancing museum accessibility for people with dementia
Camurani, Andrea
2023/2024
Abstract
It is estimated that over 55 million people worldwide are living with dementia, with Alzheimer's disease being the most prevalent neurodegenerative condition globally. The number of people with dementia is expected to rise to 139 million by 2050, especially in low- and middle-income countries (WHO, 2023). Given the absence of a cure, it is crucial to focus on improving the overall well-being of people with dementia and their families through an integrated and multidimensional approach to health, as theorized by the biopsychosocial and salutogenic models. According to positive psychology and further supported by numerous studies such as WHO Report 67 (2019) and Culture for Health (2022), this can be achieved through art and culture. Participation in artistic and cultural programs has proven beneficial in many aspects. They stimulate cognitive processes and executive functions like mental planning, memory, abstraction, and decision-making. They also enhance social aspects such as cohesion, social integration, personal expression, and communication, fostering relationships, trust, self-esteem, and overall well-being. These interventions not only benefit the participants but also positively impact the dementia care ecosystem by reducing the need for medications and institutionalization. Integrating artistic and cultural programs into the spectrum of non-pharmacological interventions helps lower the overall cost and burden of dementia care on the healthcare system. This thesis aims to develop an inclusive and participatory cultural access system in the province of Reggio Emilia for people with dementia and their caregivers, enhancing emotional and psychological well-being and fostering socialization through participatory experiences in cultural institutions. The adopted methodology is characterized by an iterative process that combines ethnographic research and a participatory approach, involving actors and experts in culture, healthcare, and public administration through interviews, focus groups, co-design sessions, and prototyping activities. The field research phase identified critical issues related to the scalability and accessibility of cultural offerings, the lack of a participatory culture towards cultural heritage, insufficient training of staff to meet the target audience's needs, and fragmented cultural experiences lacking specific planning and design for dementia. From this research, MARE (Musei per l’Alzheimer Reggio Emilia) was conceived, a network of cultural institutions in the province of Reggio Emilia that offer participatory cultural and museum experiences for people with dementia and their caregivers. This service system aims to overcome existing logistical, economic, and cognitive barriers through co-designed activities tailored to the participant's abilities and interests. The goal is to ensure inclusive access to art and culture, enabling people with dementia to benefit from these experiences, and promoting the idea that active participation in the cultural and social life of the community is a fundamental right for all, moving towards a dementia-friendly society.File | Dimensione | Formato | |
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https://hdl.handle.net/10589/223768