What matters most: Exploring the everyday lives of people with dementia

Abstract

ObjectivesResearch 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.MethodsInspired 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.FindingsSix 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.ConclusionsFor 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.

The Perspective of Residents Living With Dementia Toward Their Built Environment: A Walking Interview Study in German Nursing Homes

“…The walking interview method was chosen for its advantages over a “traditional” interview situation, both for the topic of the built environment and for the group of participants involved ( Jones et al, 2008 ; Kusenbach, 2003 ; Odzakovic et al, 2018 ). It has previously been used as a method to engage people living with dementia and explore their perspectives at home ( Huizenga et al, 2023 ) and in community settings ( Bartlett & Brannelly, 2019 ; Odzakovic et al, 2018 ), one-by-one or within group walks ( Phinney et al, 2016 ). As these authors reported positive experiences of involving participants in a more equal way and letting them decide where to go and what environmental aspects to see, we decided to choose this method for residents living with dementia in nursing homes.…”