Being Home with Dementia: Explorations of the Meaning of Home and Approaches to Care and Support

Background : The coming years will see an increase in the number of persons with dementia, and more persons with dementia will live at home for a longer time. Over time, most home-dwelling persons with dementia will be increasingly in need of individualized, coordinated care and support. A multitude of innovative care and support measures for persons with dementia has been established, and beneficent effects are seen, although with some ambiguity. In addition, coordination and individual adaptation has proved to be challenging. These complex issues have led to a call for developing sustainable care pathways that also are able to maintain the persons’ basic rights to autonomy and participation in decision-making processes. Objectives: Primary objective: To explore the meaning of home and approaches designed to promote and coordinate care for home-dwelling persons with dementia. Secondary objectives: To explore and describe how the home, as described by persons with dementia, can be interpreted and comprehended; to explore and describe how the home may be affected by care and support measures for persons with dementia; to explore the role of a coordinator for persons with dementia and their informal caregivers, and how a coordinator may contribute to support and empower home-dwelling persons with dementia. Methods: For study one, which resulted in two articles, 12 home-dwelling persons with dementia were interviewed, individually, considering their perceptions on 1) living at home and 2) receiving care and support. In study two, 18 stakeholders in an intervention testing the use of a coordinator for dyads, consisting of persons with dementia and their informal caregivers, were interviewed to explore the role of a coordinator for persons with dementia. In this study we used a combination of focus group-, dyad- and single interviews. A hermeneutical methodology was chosen for the design, application and analysis of both studies. The care philosophy of Kari Martinsen was chosen as a theoretical framework for interpreting the findings. Results: 1) There is a reciprocal relationship between the life and the home, being held up by certain individual rhythms of life; dementia might disrupt these rhythms. 2) The individual perception of care and support might depend on minor details, often with a thin line between experiencing it as supportive or infringing. 3) As the dyads had differing needs we found that the coordinators took on three roles: being a safety net; being a pathfinder in finding adequate support; and being a source for emotional care and support for persons with dementia and their informal caregivers. Obtaining direct user participation in decision-making processes may, however, be challenging. Conclusion: The home can be seen as a construction bearing existential meaning beyond its physical function. Its components, in form of habits, things, personal relations, the surrounding environment and so on, may be intricately interrelated and interdependent upon each other. This makes the home flexible, but also fragile, and support measures that are not individually adapted may have unpredicted side effects. A dedicated coordinator, meeting the persons and their informal caregivers with openness, may support the person with dementia in being home, by exploring what matters for the individual; empower them by including them in dialogue about how to make what matters, matter; and by putting adequate care and support into effect in order to actually make it matter. We recommend an open and curious approach in each individual meeting, in the organisation of care and support and in further research upon these issues.Doktorgradsavhandlin

“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.publishedVersio

Digital phenotyping by wearable-driven artificial intelligence in older adults and people with Parkinson's disease: Protocol of the mixed method, cyclic ActiveAgeing study

This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.Background: Active ageing is described as the process of optimizing health, empowerment, and security to enhance the quality of life in the rapidly growing population of older adults. Meanwhile, multimorbidity and neurological disorders, such as Parkinson’s disease (PD), lead to global public health and resource limitations. We introduce a novel user-centered paradigm of ageing based on wearable-driven artificial intelligence (AI) that may harness the autonomy and independence that accompany functional limitation or disability, and possibly elevate life expectancy in older adults and people with PD. Methods: ActiveAgeing is a 4-year, multicentre, mixed method, cyclic study that combines digital phenotyping via commercial devices (Empatica E4, Fitbit Sense, and Oura Ring) with traditional evaluation (clinical assessment scales, in-depth interviews, and clinical consultations) and includes four types of participants: (1) people with PD and (2) their informal caregiver; (3) healthy older adults from the Helgetun living environment in Norway, and (4) people on the Helgetun waiting list. For the first study, each group will be represented by N = 15 participants to test the data acquisition and to determine the sample size for the second study. To suggest lifestyle changes, modules for human expert-based advice, machine-generated advice, and self-generated advice from accessible data visualization will be designed. Quantitative analysis of physiological data will rely on digital signal processing (DSP) and AI techniques. The clinical assessment scales are the Unified Parkinson’s Disease Rating Scale (UPDRS), Montreal Cognitive Assessment (MoCA), Geriatric Depression Scale (GDS), Geriatric Anxiety Inventory (GAI), Apathy Evaluation Scale (AES), and the REM Sleep Behaviour Disorder Screening Questionnaire (RBDSQ). A qualitative inquiry will be carried out with individual and focus group interviews and analysed using a hermeneutic approach including narrative and thematic analysis techniques. Discussion: We hypothesise that digital phenotyping is feasible to explore the ageing process from clinical and lifestyle perspectives including older adults and people with PD. Data is used for clinical decision-making by symptom tracking, predicting symptom evolution, and discovering new outcome measures for clinical trials.publishedVersio

Hjemmesykepleien - I spenningsfeltet mellom økonomi og moral. En praxeologisk studie av hjemmesykepleiens utvikling

This paper seeks to discover how it may be that we have home care services in Norway today. Using registrant analysis I have studied political documents concerning the field from 1948-2015 and the processing of these in the Norwegian Parliament. By studying these documents in a health political and societal context, applied by older history concerning the field, I have tried to reveal the structuring structures that has made out the conditions of possibility for the occurrence and development of the home care services as a field. In addition, I have reviewed recent studies to reveal how the field is structuring as of today. The study, based on a praxeological optic, draws on the field theory of French sociologist Pierre Bourdieu and his thoughts on the state and the public. The paper looks on the home care services as a field in three levels. First, as a subfield within the health political field on a national level. Second, as a subfield within the total field of health and municipal health services in Norway. Third, as a field in itself, that is, as a nursing practise. The outcome of the registrant analysis is presented in two parts. First, as a descriptive view of the development of the home care services on all three levels and in light of the processing of the political documents that constitutes the empirical base of the paper. The second part seeks, with a praxeological optic, to objectivise and analyse this. In this way, the paper shows how the home care services as a field has developed, and how the structures behind this development are structuring the home care services today. The study shows that the home care services occurred as a measure, organised by parishes and humanitarian organisations, as remedy for social need. As the pressure raised, they contacted the government for support, stressing their services saved the society of unnecessary load on the hospitals. This economical rhetoric was then relieved by arguments stressing the patients was better off at home. In this way, the services has evolved in a tension between an economic and a moral logic. For the nurses, practising the services, this tension occurs as they are set to meet limitless needs with limited resources. The nursing field cope with this dilemma by nurses stretching the limits of what they are capable of, by breaking rules for the services they are obligated to do, and by closing the field to those nurses not capable of coping with this dilemma

“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

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

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 [email protected] 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

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 [email protected] 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

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 [email protected] 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