Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.
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OBJECTIVE: to gain insight into what older adults after hip fracture perceive as most beneficial to their recovery to everyday life.DESIGN: qualitative research approach.SETTING: six skilled nursing facilities.PARTICIPANTS: 19 older community dwelling older adults (aged 65-94), who had recently received geriatric rehabilitation after hip fracture.METHODS: semi-structured interviews were conducted with 19 older adults after hip fracture. Coding techniques based on constructivist grounded theory were applied.RESULTS: four categories were derived from the data: 'restrictions for everyday life', 'recovery process', 'resources for recovery' and 'performing everyday activities'. Physical and psychological restrictions are consequences of hip fracture that older adults have struggled to address during recovery. Three different resources were found to be beneficial for recovery; 'supporting and coaching', 'myself' and 'technological support'. These resources influenced the recovery process. Having successful experiences during recovery led to doing everyday activities in the same manner as before; unsuccessful experiences led to ceasing certain activities altogether.CONCLUSION: participants highlight their own role ('myself') as essential for recovery. Additionally, coaching provides emotional support, which boosts self-confidence in performing everyday activities. Furthermore, technology can encourage older adults to become more active and being engaged in the recovery process. The findings suggest that more attention should be paid to follow-up interventions after discharge from inpatient rehabilitation to support older adults in finding new routines in their everyday activities.A conceptual model is presented and provides an understanding of the participants' experiences and perspectives concerning their process of recovery after hip fracture to everyday life.
"Objectives: Research on what matters most to people with dementia is crucial for developing tailored interventions and support. This study explored how people with dementia experience their everyday lives, providing insight into what is important to them to live the best they can at home. Methods: Inspired by a phenomenological approach, open interviews were conducted with 15 people with dementia, supplemented by home tours and walking interviews. Data collection included one to three sessions per participant. Data were analysed using descriptive content analysis and followed the phases of open, axial, and selective coding. A co‐researcher group of seven people with dementia was consulted during the analysis to help interpret the emergent findings. Findings: Six dimensions of what matters most in everyday life were identified: 1) Engaging in meaningful activities, which included routines, household chores, leisure, day activities, and volunteering or work; 2) Keeping a sense of connection, in relationships within the home, with family, friends, groups, and the neighbourhood; 3) Having a sense of belonging, which included attachments inside and outside the home, and to cherished objects; 4) Connecting to self, which included the ability to reflect on past experiences, live in the present moment and anticipate the future; 5) Adjusting to ongoing changes, which included alterations in sensory perceptions, perceptions of the physical environment, and navigating shifts in interpersonal dynamics; 6) Being open to help and support, from professionals, community and society. Conclusions: For people with dementia, everyday life is a continuous balancing act between what matters most and what can be achieved daily. This is not only related to dementia but is also embedded in the wider perspective of life history, relational networks, and the physical environment. This study highlights the importance of identifying what matters most to people with dementia to provide person‐centred support."
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Teachers have a crucial role in bringing about the extensive social changes that are needed in the building of a sustainable future. In the EduSTA project, we focus on sustainability competences of teachers. We strengthen the European dimension of teacher education via Digital Open Badges as means of performing, acknowledging, documenting, and transferring the competencies as micro-credentials. EduSTA starts by mapping the contextual possibilities and restrictions for transformative learning on sustainability and by operationalising skills. The development of competence-based learning modules and open digital badge-driven pathways will proceed hand in hand and will be realised as learning modules in the partnering Higher Education Institutes and badge applications open for all teachers in Europe.Societal Issue: Teachers’ capabilities to act as active facilitators of change in the ecological transition and to educate citizens and workforce to meet the future challenges is key to a profound transformation in the green transition.Teachers’ sustainability competences have been researched widely, but a gap remains between research and the teachers’ practise. There is a need to operationalise sustainability competences: to describe direct links with everyday tasks, such as curriculum development, pedagogical design, and assessment. This need calls for an urgent operationalisation of educators’ sustainability competences – to support the goals with sustainability actions and to transfer this understanding to their students.Benefit to society: EduSTA builds a community, “Academy of Educators for Sustainable Future”, and creates open digital badge-driven learning pathways for teachers’ sustainability competences supported by multimodal learning modules. The aim is to achieve close cooperation with training schools to actively engage in-service teachers.Our consortium is a catalyst for leading and empowering profound change in the present and for the future to educate teachers ready to meet the challenges and act as active change agents for sustainable future. Emphasizing teachers’ essential role as a part of the green transition also adds to the attractiveness of teachers’ work.
Everyone has the right to participate in society to the best of their ability. This right also applies to people with a visual impairment, in combination with a severe or profound intellectual and possibly motor disability (VISPIMD). However, due to their limitations, for their participation these people are often highly dependent on those around them, such as family members andhealthcare professionals. They determine how people with VISPIMD participate and to what extent. To optimize this support, they must have a good understanding of what people with disabilities can still do with their remaining vision.It is currently difficult to gain insight into the visual abilities of people with disabilities, especially those with VISPIMD. As a professional said, "Everything we can think of or develop to assess the functional vision of this vulnerable group will help improve our understanding and thus our ability to support them. Now, we are more or less guessing about what they can see.Moreover, what little we know about their vision is hard to communicate to other professionals”. Therefore, there is a need for methods that can provide insight into the functional vision of people with VISPIMD, in order to predict their options in daily life situations. This is crucial knowledge to ensure that these people can participate in society to their fullest extent.What makes it so difficult to get this insight at the moment? Visual impairments can be caused by a range of eye or brain disorders and can manifest in various ways. While we understand fairly well how low vision affects a person's abilities on relatively simple visual tasks, it is much more difficult to predict this in more complex dynamic everyday situations such asfinding your way or moving around during daily activities. This is because, among other things, conventional ophthalmic tests provide little information about what people can do with their remaining vision in everyday life (i.e., their functional vision).An additional problem in assessing vision in people with intellectual disabilities is that many conventional tests are difficult to perform or are too fatiguing, resulting in either no or the wrong information. In addition to their visual impairment, there is also a very serious intellectual disability (possibly combined with a motor impairment), which makes it even more complex to assesstheir functional vision. Due to the interplay between their visual, intellectual, and motor disabilities, it is almost impossible to determine whether persons are unable to perform an activity because they do not see it, do not notice it, do not understand it, cannot communicate about it, or are not able to move their head towards the stimulus due to motor disabilities.Although an expert professional can make a reasonable estimate of the functional possibilities through long-term and careful observation, the time and correct measurement data are usually lacking to find out the required information. So far, it is insufficiently clear what people with VZEVMB provoke to see and what they see exactly.Our goal with this project is to improve the understanding of the visual capabilities of people with VISPIMD. This then makes it possible to also improve the support for participation of the target group. We want to achieve this goal by developing and, in pilot form, testing a new combination of measurement and analysis methods - primarily based on eye movement registration -to determine the functional vision of people with VISPIMD. Our goal is to systematically determine what someone is responding to (“what”), where it may be (“where”), and how much time that response will take (“when”). When developing methods, we take the possibilities and preferences of the person in question as a starting point in relation to the technological possibilities.Because existing technological methods were originally developed for a different purpose, this partly requires adaptation to the possibilities of the target group.The concrete end product of our pilot will be a manual with an overview of available technological methods (as well as the methods themselves) for assessing functional vision, linked to the specific characteristics of the target group in the cognitive, motor area: 'Given that a client has this (estimated) combination of limitations (cognitive, motor and attention, time in whichsomeone can concentrate), the order of assessments is as follows:' followed by a description of the methods. We will also report on our findings in a workshop for professionals, a Dutch-language article and at least two scientific articles. This project is executed in the line: “I am seen; with all my strengths and limitations”. During the project, we closely collaborate with relevant stakeholders, i.e. the professionals with specific expertise working with the target group, family members of the persons with VISPIMD, and persons experiencing a visual impairment (‘experience experts’).
In my PD research, I want to focus on how collectivity is practiced in the arts, by learning from the Indonesian multidisciplinary art collective ruangrupa’s use of [the international art exhibition] ‘documenta’ as a tool, and the potential of continuing the experiences outside this group and context. The art practices programmed by ruangrupa can be understood as complex and ambiguous where art is not at the center of attention but part of a larger communal productivity. And where it is not sufficient to be merely critical, and merely voice opposition, but to engage, and create alternatives in everyday life [without being problem-solving or social design]. My research concerns the potential of continuing these practices and experiences outside this particular artist group and exhibition context. Ruangrupa’s work reveals problems of the current Western art system, how it is (hierarchically) organized, the implicit rules, norms and values it is based on. Ruangrupa's practice thus serves as an exercise and point of departure to answer questions about forms of self-organization within the art field. Its collective and multidisciplinary art practice implies the question whether it also can serve as a model for living together on a larger scale (also outside the arts), beyond hierarchies of social and professional structures. There is currently a lack of research on these particular art practices, so that they are not easily accessible for non-participants. For the art field in particular, this concerns the question whether contemporary art can and needs to take place outside established Western gallery/museum, art/curatorial paradigms and what can be learned from ruangrupa's and documenta fifteen's blending of art practice with daily life practice. This is also an urgent practical issue for art schools (including my school Willem de Kooning Academy) that increasingly develop art study programs outside the studio and gallery art paradigm.
