"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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Introduction to a special issue of the IASPM journal. This special issue on fan studies aims to build a bridge with the study of popular music in order to inspire further investigation of music fandom.
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Background The experiences of residents who have communication difficulties such as dysphasia are largely absent from the literature. Aim To illuminate the everyday experiences of four residents with severe communication difficulties living in a residential care setting in the Netherlands. Methodology & Methods A collective case study methodology was used. Seventy-five hours of observation, interview and documentary data was gathered over six weeks. Alternative strategies of communication were developed to enable the co-creation of dialogue between participants and researcher. For example, a participant who could not talk used intentionally created artwork to share her ideas with the researcher. Findings Participants' daily experiences were characterised by struggling against the constraints of the residential setting: having to wait, having unmet needs, experiencing vulnerability and uncertainty. Participants' communication difficulties exacerbated these constraints. Their experiences of struggling were sometimes ameliorated by significant social contact with family or particular staff members, and engaging in enjoyable activities. Occasionally the experiences of enjoying the here-and-now, and being 'seen' as a person by the other, would create beautiful moments in which truly person centred engagement would occur. These moments were neither articulated nor recorded, and were thus invisible after they had occurred. Similarly, the experiences of struggling against the constraints were neither acknowledged nor recorded. Significant experiences in the lives of these four residents were therefore invisible to others. The unifying theme representing the participants' daily experiences was: That which goes unsaid. Discussion It was necessary to develop communication strategies which would by-pass the researcher's assumptions and enable participants to introduce their own ideas and opinions. This ongoing process of co-creation of dialogue required work from, and trust between, participants and researcher. What is new? Expressly seeking the views of residents with communication difficulties Successfully using process consent with participants in this situation Using intentionally created artwork during data gathering in this context What has regional, national or international relevance? The findings indicate that people with communication difficulties may not receive optimal care in residential settings in the Netherlands. Methods are described which could be used by practitioners in their everyday work, and which show facilitators or practice developers how they can help carers to engage in more effective communication with this kind of resident. Additionally, this research contributes to the international discussion about ethical participation of vulnerable people in research.
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