11 research outputs found
Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study
t: 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 i
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\u2019 need