Exploration of the Older Adult Informal Caregiver Self-Care Promoting Well-Being

abstract: ABSTRACT This qualitative descriptive study described caregiver recognition of personal and social contextual resources guiding purposeful participation in self-care and well-being. This research builds on health empowerment theory, which conceptualizes health empowerment as an inherent, relational and ongoing process, expressive of health patterning of well-being (Shearer, 2009). By 2060, Americans 65 years and older will number nearly 98 million, more than double that in 2013. The number of older adults aged 85 and older will double from 6 million in 2003, to 14.6 million by 2040 (Health & Human Services, 2014). Sixty-five million adults serve as informal caregivers, many themselves suffering from chronic conditions (National Alliance for Caregiving & AARP, 2009). Current research has examined the burden of caregiving, but little is known about caregiver strengths and resources that foster personal self-care and well-being. Twenty-one older adult informal caregivers participated in focus groups or individual interviews. Length of time as caregivers ranged from one year to more than ten years; 24% of the participants were men. Seventy-six percent of the participants reported having one or more chronic condition. Themes generated from qualitative content analysis provided a basis for validating and extending the health empowerment theory among older adult informal caregivers. Across participants, empowerment reflected recognition of strengths and resources, as well as growth consistent with valued goals facilitating new health patterns and well-being. The health empowerment theory perspective provided a relevant basis for theory-based intervention focused on promoting strengths, abilities and potential among older adults, limiting vulnerability to diminished health and well-being.Dissertation/ThesisDoctoral Dissertation Nursing and Healthcare Innovation 201

The well-being of carers of older Aboriginal people living in the Kimberley region of remote Western Australia: Empowerment, depression, and carer burden

Objective: To describe demographic features and well-being of carers of Aboriginal Australians aged ≥45 years in remote Western Australia. Method: Carer burden, empowerment, and depression were assessed in 124 Aboriginal carers in four remote Aboriginal communities. Results: Carers were aged 38.8 ± 15.0 years, 73.4% were female, and 75.8% were children or grandchildren of the person cared for. The mean Zarit-6 score was 3.7 ± 3.6. Attending high school (odds ratio [OR] = 0.3; 95% confidence interval [CI] = [0.1, 0.7]) and feeling empowered (OR = 0.2; 95% CI = [0.1, 0.8]) were inversely associated with carer burden; female carers were less likely to feel empowered (OR = 0.4; 95% CI = [0.2, 0.9]); and empowerment was inversely associated with depression (OR = 0.3; 95% CI = [0.1, 0.7]). Discussion: Aboriginal carers in remote communities are relatively young and most are children or grandchildren. Carer burden was lower than anticipated. However, existing tools may not adequately measure Aboriginal perspectives. Education and empowerment are key factors which support programs must consider

Aging with Dementia and an Intellectual Disability: A Case Study of Supported Empowerment in a Community Living Home

This case study explores the qualitative experience of 4 consumers with a dual disability living in a home specializing in dementia support. Drawing insights from participant observation, daily living log notes, and interviews with 4 each of family/friend caregivers, direct-care staff, and administrators, the study has 3 main goals: (i) to understand how the onset of dementia in people with an intellectual disability changes their needs, what adjustments have to be made in the support practices, and what service barriers and successes are experienced; (ii) to understand how people with dual disabilities experience living in a home specializing in dementia support and how stakeholders perceive this model of support; and (iii) to identify ways policymakers can better respond to the changing needs of people with dual disabilities. The findings of the study identify two social processes; one of marginalization and the other of supported empowerment. The process of marginalization depicts how dementia affects people with intellectual disabilities as they incur multiple losses in ability, home, and community. In spite of losses, the data illustrate how these individuals maintain their selfhood with good health support, decision-making, self-agency, and autonomy. Further, a home of choice with an individualized transition process, consistent and person-centered support, and elevated empathy facilitate their freedom of choice. Engaging the self in community, both inside and outside the home, is emphasized. The findings are contrasted with divergent perspectives on support practices and barriers in providing empowering support to consumers living in the home. The study generates a theory of supported empowerment grounded in the data. This theory yields an empowering social model and micro-practices that harness elements of empowerment necessary to support people with dual disabilities. Seven policy considerations that prevent premature placement in nursing homes, enable aging in place, and maintain a participatory life in community are recommended from insights gained. Several research implications are raised by this study, notably, inclusive research methodologies to access the voice of people with a dual disability, caregiver support, inclusive community participation, the benefits of social versus medical models of long-term support, and personhood created in quality of lives

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

Designing with and for People with Dementia: Wellbeing, Empowerment and Happiness

Designing with and for People with Dementia: Wellbeing, Empowerment and Happiness is the International Conference 2019 of the MinD Consortium, the DRS Special Interest Group on Behaviour Change and the DRS Special Interest Group on Wellbeing and Happiness, hosted by the Technische Universität Dresden, in Dresden, Germany. The conference proceedings provide trans-disciplinary contributions for researchers, practitioners, end-users and policy makers from the design and health care professions in terms of new findings, approaches and methods for using design to improve dementia care and to support people with dementia and their carers. The conference has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No 691001, and from the DFG German Research Foundation

An evaluation of the role of the Admiral Nurse : a systematic evidence synthesis to inform service delivery and research

Two thirds of people with dementia live in the community and receive support from family members. There is a great deal of evidence to suggest that caring for a person with dementia impacts on the health and wellbeing of family carers. Despite this the provision of funded support for family carers is often limited or inadequate. Admiral Nurses, developed in the 1990s, were specifically designed by the charity for dementia (now Dementia UK) to support the family carers of people with dementia. Admiral Nurses are mental health nurses specialising in the care of people with dementia. They are mainly employed by local providers of care for people with dementia but dementia UK is involved in setting up new posts and providing ongoing practice development. There are currently around 100 Admiral Nurses employed in England. In addition the charity has a national helpline provided by experienced Admiral Nurses. The evidence synthesis presented here was commissioned by Dementia UK in order to establish what is currently known about the scope, nature and effectiveness of Admiral Nurse

Exploring the whole family experience living with younger onset dementia from a social model perspective

Social inequalities were identified as being experienced by individuals living with all types of impairments. However, those living with cognitive impairments under 65 years, were identified as being less understood by society, and associated with experiences of significant discrimination. The following Chapter 3; Feeling invisible and ignored: families experiences of marginalisation living with younger onset dementia explored from a social model perspective, the social factors which impact on the experiences of families living with YOD, including children and young people. In Chapter 3, our attention was drawn to the negative impact of society’s response and attitudes, adding to the marginalisation of families - affecting their relationships and ability to function together. The consequences of these lived experiences for children and young people having a parent with YOD, was highlighted as a gap in the research literature. The subsequent Chapter 4: The emotional well-being of young people having a parent with younger onset dementia looked at the societal influences on the emotional well-being of these children and young people from the perspective of the social model of disability. Chapter 4 confirms the ongoing emotional distress faced by children and young people at a particularly challenging time in their own lifecycle. The authors then delved further in an attempt to make sense of their lived experiences, having a parent with younger onset dementia. The outcome of this research resulted in Chapter 5: Empowerment of young people who have a parent living with dementia: a social model perspective, which considered what social factors, could facilitate better support and social inclusion for these children and young people. At this juncture the research demonstrated YOD impacts the whole family unit, thus highlighting the need for greater social inclusion, societal acceptance and enablement. Tailored formal services and support to address the complex and challenging needs of all family members, an area that has had little focus in the research literature, needed further exploration. This challenge was undertaken in Chapter 6: Co-creation of a family-focused service model living with younger onset dementia using the combined perspectives of the social model of disability and the family systems illness model. Bringing together the viewpoints of healthcare and service providers with all family members was critical to making sense of the multifaceted societal challenges faced in providing and receiving age-appropriate services. A theoretical framework was proposed as the basis for a co-created, family-focused service model. VI Conclusion: Throughout this thesis the common theme that has linked these chapters together, from the perspective of the social model of disability, has been the lack of understanding and largely unmet needs of people living with YOD and their family members. Experiences of socially constructed disablement impacts family function, relationships and connectedness. Hence, looking through the social model lens in relation to dementia allows us to see things differently, to redirect attention away from a diagnosis, personal tragedy, and disablement; and instead to focus on choice, control and enablement of the whole family. The proposed co-created, family focused service model could provide the foundation for developing social model principles to service policies and practices through greater cooperation, communication and learning between service users, service providers and stakeholders. With the aim to change societal views, and improve understanding and social inclusion, thereby enabling the whole family to feel valued and live well with dementia

Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study

t: The number of community-dwelling people with dementia (PwD) is rising, and the role of their relatives is crucial in addressing and mitigating the implications of dementia on health care systems and on society. We developed a new conceptual framework to promote the collaboration of the community in supporting relatives who are caring for a PwD as well as a range of stakeholders in embracing dementia. A qualitatively driven, multi-method study divided into three phases was performed from 2019 to 2021. A qualitative descriptive study, a mixed-method systematic review and three consensus workshops were conducted, and their results were triangulated. The final version of the Community Collaboration Concept Framework is composed of three main domains based upon seven components: (1) embracing dementia; (2) creating empowerment and a sense of community; (3) collaborating through cocreation and design thinking. The new framework is based on the literature, the synthesis of empirical data and the consensus of a panel of international experts, supporting the global goal of improving community inclusiveness and collaboration. Further studies are needed to confirm its validity, how it should be implemented in practice in various settings and to propose improvements when designing projects based upon i

Occupational Transitions of Family Caregivers of Loved Ones with Dementia

Purpose: The primary purpose of this study was to explore how family caregivers of people with dementia experience transitions in occupations as they assume the caregiver role. Because unpaid family caregivers play a vital part in the scheme of health care, it is important to understand their supports, their perceptions of themselves as caregivers, and the impact of caregiving on relationships, identity, and physical and mental health. Many researchers have studied the effects of caregiver burden, yet minimal attention has been given to the lived experiences of caregiving on their daily roles and routines. Methods: A qualitative descriptive design was used to obtain data from eight caregivers through semi-structured interviews. Content analysis was then applied to all data. Results: The following categories were identified: 1) Benefits, which consisted of the positive experiences gained as a result of caregiving; 2) Consequences, which included the physical, mental, and emotional burdens attached to being a caregiver; and 3) Supports, which were positive resources utilized by caregivers to be both better prepared to care for their loved ones and more capable within their caregiving role. Conclusion: Findings confirm that unpaid caregivers of loved ones with dementia experience dramatic changes in many aspects of their lives. Caregivers felt a strong responsibility as a family member to provide care for their loved ones. It has been found that caregivers spend most of their time engaged in caregiver related tasks, consequently impacting their occupational balance and ability to engage in what they would like to do. Health care providers must be mindful of the changes that caregivers experience, by assisting them to increase supports, anticipate the consequences, and recognize and value the benefits

Elder Mediation in Theory and Practice: Study Results from a National Caregiver Mediation Demonstration Project

Mediation is a process through which a third party facilitates discussion among disputing parties to help them identify interests and ideally reach an amicable solution. Elder mediation is a growing subspecialty to address conflicts involving older adults, primarily involving caregiving or finances. Mediation is theorized to empower participants but critics argue that it can exacerbate power imbalances among parties and coerce consensus. These contested claims are examined through study of a national caregiver mediation demonstration project. Study implications underscore the importance of gerontological social work expertise to ensure the empowerment of vulnerable older adults in mediation sessions