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

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.

Needs, issues, and expectations on dementia care at home across Europe to inform policy development: Findings from a transnational research study.

This qualitative descriptive study explored needs, issues, and expectations on dementia care at home as expressed by relatives of people living with dementia (PwD), health and social care professionals (HSCPs), and members of civil society organisations (CSOs) from four European countries. A focus group methodology integrated with individual semi-structured interviews was adopted to collect data by employing a purposeful sampling method. A total of 13 focus groups and 12 individual interviews were conducted in 2019, involving 65 relatives of PwD, 32 HSCPs, and 23 members of CSOs. Deductive content analysis and findings triangulation were performed to analyse data, and a subgroup of participants confirmed the findings. Relatives need to be (a) informed and trained to cope with changes in PwD, (b) recognised for their caregiving role, and (c) assisted by specialised HSCPs. Professionals who work in partnership with PwD and their relatives call for a reorganisation of available services. CSOs compensate for the lack of proper support, promoting networks, and cooperation with local communities. Several commonalities emerged across countries, highlighting the chance to inform and develop common policies to improve the quality of life of PwD and their relatives across Europe. Policies improving person- and family-centred care and spreading dementia-friendly community concepts and practices are suggested. Strong collaborations between formal and informal services and communities are also needed as well as information on educational strategies to improve the use of resources, promote PwD care, and support PwD relatives' needs.