Exploring active ageing in a community-based living environment: an ethnographic study in the Western Norway context.

Background: Age-friendly environments intend to promote active ageing by facilitating social, mental, and physical participation. This could potentially delay the onset of chronic complex conditions, enabling people to live longer independently at home, and prevent loneliness. This study investigates a community-based living environment in Norway called Helgetun and aims to explore how it can facilitate active ageing. Method: We chose an ethnographic approach consisting of observation, informal conversations, and in-depth semi-structured interviews with 15 residents (11 female, 4 male, ages 62-84). We analysed the data using reflexive thematic analysis. Result: We developed three themes on facilitating active ageing in this living environment: maintaining self-identity, experiencing growth and development, and feeling a sense of belonging. These themes were related to physical activity levels, social engagement, and overall satisfaction with the living environment. Maintaining self-identity concerned getting a new role in life as well as access to meaningful activities. Experiencing growth and development involved being exposed to new activities, learning new skills, and experiencing mastery. Lastly, feeling a sense of belonging meant feeling safe and part of a group, as well as receiving social support and help. This feeling of social connectedness and safety was reflected in their experience with the COVID-19 pandemic, in which most felt relatively unaffected, suggesting that this way of living could increase reliance among this age group. Conclusion: Having a flexible structure, adapting to the core needs and individual resources of the residents, can facilitate active ageing in community-based living environments. Our findings contribute to the growing evidence that these environments increase social and physical engagement, whilst reducing social isolation and loneliness. These findings may be particularly relevant in a Norwegian context-where older adults are less dependent on family for care-and are meant as grounding points for policymakers to reflect upon designing future senior living.

The compound role of a coordinator for home-dwelling persons with dementia and their informal caregivers: qualitative study.

BACKGROUND: As the number of persons with dementia is increasing, there has been a call for establishing sustainable clinical pathways for coordinating care and support for this group. The LIVE@Home.Path trial is a multicomponent, multi-disciplinary intervention combining learning, innovation, volunteer support and empowerment. To implement the intervention, a municipal coordinator has a crucial role. Implementation research on multicomponent interventions is complex and we conducted a qualitative study, aiming to explore the coordinator role and how a coordinator may empower persons with dementia in decision-making processes. METHODS: Qualitative program evaluation combined with a hermeneutic interpretive approach was chosen as methodological approach. Sixteen dyads, consisting of the person with dementia and their main informal caregiver received the intervention by two coordinators. Of these, six dyads, three informal caregivers alone and the two care coordinators along with their leader, in sum, eighteen persons, participated in in-depth or focus group interviews, sharing their experiences after 6 months intervention. RESULTS: We found that the coordinators fulfilled three functions for the participating dyads: being a safety net, meaning that the dyads might have little needs at the moment, but found safety in a relation to someone who might help if the situation should change; being a pathfinder, meaning that they supported the dyads in finding their way through the complicated system of care and support services; being a source for emotional care and support, meaning that they listened, acknowledged and gave counsel in times of distress. The coordinators emphasized that a trusting leader and work environment was crucial for them to fulfill these functions. We also found that it was challenging for the coordinators to build a relation to the persons with dementia in order to pursue genuine empowerment in decision-making processes. CONCLUSION: We found the framework for follow-up to be a feasible starting point for establishing empowering coordination and a sustainable care pathway for persons with dementia and their informal caregivers. More meeting points between coordinator and person with dementia should be pursued in order to fulfill the persons' fundamental rights to participate in decision-making processes.

LIVE@Home.Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial.

BACKGROUND: The global health challenge of dementia is exceptional in size, cost and impact. It is the only top ten cause of death that cannot be prevented, cured or substantially slowed, leaving disease management, caregiver support and service innovation as the main targets for reduction of disease burden. Institutionalization of persons with dementia is common in western countries, despite patients preferring to live longer at home, supported by caregivers. Such complex health challenges warrant multicomponent interventions thoroughly implemented in daily clinical practice. This article describes the rationale, development, feasibility testing and implementation process of the LIVE@Home.Path trial. METHODS: The LIVE@Home.Path trial is a 2-year, multicenter, mixed-method, stepped-wedge randomized controlled trial, aiming to include 315 dyads of home-dwelling people with dementia and their caregivers, recruited from 3 municipalities in Norway. The stepped-wedge randomization implies that all dyads receive the intervention, but the timing is determined by randomization. The control group constitutes the dyads waiting for the intervention. The multicomponent intervention was developed in collaboration with user-representatives, researchers and stakeholders to meet the requirements from the national Dementia Plan 2020. During the 6-month intervention period, the participants will be allocated to a municipal coordinator, the core feature of the intervention, responsible for regular contact with the dyads to facilitate L: Learning, I: Innovation, V: Volunteering and E: Empowerment (LIVE). The primary outcome is resource utilization. This is measured by the Resource Utilization in Dementia (RUD) instrument and the Relative Stress Scale (RSS), reflecting that resource utilization is more than the actual time required for caring but also how burdensome the task is experienced by the caregiver. DISCUSSION: We expect the implementation of LIVE to lead to a pathway for dementia treatment and care which is cost-effective, compared to treatment as usual, and will support high-quality independent living, at home. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04043364. Registered on 15 March 2019.

Home-dwelling persons with dementia's perception on care support: Qualitative study.

BACKGROUND: Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights. RESEARCH OBJECTIVE: This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers. RESEARCH DESIGN: A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations. PARTICIPANTS AND RESEARCH CONTEXT: Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers. ETHICAL CONSIDERATIONS: Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants' integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study. FINDINGS: The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants' assessments of daycare centers relied on specific aspects, with high individual variety. DISCUSSION AND CONCLUSION: The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons' everyday life. This indicates that patient participation in decision-making processes for this group is-in addition to be a judicial and ethical requirement-crucial to ensure adequate care and support.

"We live as good a life as we can, in the situation we're in" - the significance of the home as perceived by persons with dementia.

BACKGROUND: The coming years will see more persons with dementia living longer at home. However, "the home" is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home. METHODS: Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on "The home" were chosen as a framework for the theoretical interpretation of the findings. RESULTS: The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point. CONCLUSION: The study suggests that the participants' home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.