Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study

Abstract

The number of community-dwelling people with dementia (PwD) is rising, and the role of their relatives is crucial in addressing and mitigating the implications of dementia on health care systems and on society. We developed a new conceptual framework to promote the collaboration of the community in supporting relatives who are caring for a PwD as well as a range of stakeholders in embracing dementia. A qualitatively driven, multi-method study divided into three phases was performed from 2019 to 2021. A qualitative descriptive study, a mixed-method systematic review and three consensus workshops were conducted, and their results were triangulated. The final version of the Community Collaboration Concept Framework is composed of three main domains based upon seven components: (1) embracing dementia; (2) creating empowerment and a sense of community; (3) collaborating through cocreation and design thinking. The new framework is based on the literature, the synthesis of empirical data and the consensus of a panel of international experts, supporting the global goal of improving community inclusiveness and collaboration. Further studies are needed to confirm its validity, how it should be implemented in practice in various settings and to propose improvements when designing projects based upon it.

Walking the talk for dementia: A unique immersive, embodied, and multi‐experiential initiative

“…Laura Navarro Ramón (University of Santiago de Compostela, Spain) presented Sensogenomics , 14 exploring the impact of music on health, with pilot studies showing differential gene expression in Alzheimer's patients before and after a musical experience. Sara Marsillas (Matia Institute of Gerontology, Matia Fundazioa, Spain) discussed “Dementia in Cultural Mediation,” highlighting the potential of cultural activities for social inclusion in dementia care 15 . David de Jong (The Netherlands) described VR Bieb as a Virtual Reality solution 16 for care worker training, co‐designed with users to enhance empathy and patient experience.…”

“…Sara Marsillas (Matia Institute of Gerontology, Matia Fundazioa, Spain) discussed “Dementia in Cultural Mediation,” highlighting the potential of cultural activities for social inclusion in dementia care. 15 David de Jong (The Netherlands) described VR Bieb as a Virtual Reality solution 16 for care worker training, co‐designed with users to enhance empathy and patient experience. Evon Estrop (Singapore) shared her experience living with dementia, highlighting the importance of advocacy and support groups.…”

Living Well with Dementia: Feeling Empowered through Interaction with Their Social Environment

“…Our results highlight that age-friendly communities should provide services and infrastructure to promote health in older people [ 32 ] and specifically address issues that are important for PwD living in the community and their carers. In practice, this implies that beyond specific programmes for people directly affected by dementia, promoting public awareness to reduce stigma and stress the importance of social participation and inclusion of PwD and their families is essential and should form part of a community action plan for a more collaborative community [ 33 , 34 , 35 , 36 ].…”