Indiana University-Purdue University Indianapolis (IUPUI) / As healthcare increasingly shifts to home and community-based settings, informal caregiver responsibilities are increasing beyond assistance with activities of daily living to include complex care procedures previously performed by licensed caregivers in clinical settings. With an aging population, increasing numbers of older adults are assuming a caregiving role, a trend that is projected to continue into the foreseeable future. These older caregivers performing complex care procedures such as wound care. The purpose of this dissertation study was to understand how older adult caregivers manage complex wound care procedures. Aims were to 1) develop a theory for how caregivers manage; 2) identify themes related to resources needed, and 3) determine resources available through the existing Medicaid 1915(c) waivers program. Aims 1 and 2 were achieved using qualitative analysis of interviews with 18 older adult caregivers aged 65 and older who were performing wound care in the home for a care recipient. Grounded theory methods were used to develop a theoretical framework describing the process of how the participants managed caregiving. The resultant theory, Pushing Through, consisted of five phases: 1) accepting the role, 2) lacking confidence, 3) creating a system, 4) trusting in self, 5) owning the outcomes. Secondary analysis of the interview data used thematic analysis methods to identify resources used or needed for the caregiver role. The resultant themes were (a) connection to a healthcare professional, (b) written instructions, (c) access to wound care supplies, (d) access to durable medical equipment, (e) financial resources, (f) personal care coverage, and (g) socialization and emotional support. Aim 3 used descriptive analysis of Medicaid 1915(c) home- and community-based services waivers for adults aged 65 and older for all 50 states plus the District of Columbia to identify the frequency and type of waiver services available for supporting caregivers. Results revealed that the number of services offered by state Medicaid waiver programs varied greatly across the country. Respite in varying forms was the most frequently available service. Findings from this dissertation will contribute to the development of evidence-based strategies to sustain older adult caregivers within their caregiving role.

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Throughout the life course, all family members can expect to find themselves in some type of caregiving role. Individuals may find themselves providing care for a child or for an older family member who needs assistance. With the increase in life expectancy and the shrinking family size, individuals may find themselves spending time providing care to older family members. Despite the fact that caregiving related issues are well researched in the field of gerontology, the developmental experiences of grandchildren caregivers and the meanings of their caregiving experiences have not been explored in previous empirical work. Influenced by symbolic interactionism theory and the life course and life-span perspectives, the research questions that guide this study are: What is the nature of caregiving from the perspectives of grandchildren in the grandparent-grandchild relationship? What meanings do grandchildren give to the caregiving role? A qualitative study was conducted to examine the experiences of adult grandchildren (21-29 years old) who were currently providing some type of care-related activity for at least one grandparent. Face-to-face semi-structured interviews, lasting 30-80 minutes, with 17 grandchildren caregivers were conducted one time to examine the participants' caregiving experience. All interviews were completed at a location of the participants' choice. Interviews were tape-recorded and tapes were transcribed verbatim to aid in data analysis. Grandchildren caregivers' experiences illustrate variation with the reasons for providing care and the amount of time engaged in care related activities. Grandchildren were assisting with instrumental activities of daily living and activities of daily living. Reasons for providing care included grandparents' chronic illness or gradual aging, a crisis or event that left grandparents needing assistance, and because they had been providing care since they were young children. The amount of time grandchildren engaged in care related activities ranged from daily to several hours a week during summer and winter breaks. Grandchildren caregivers reported that family values, making grandparents happy, and preparing for the future were how they made sense of their role. Grandchildren experienced benefits and drawbacks from assisting grandparents and discussed how parents served as mediators and distracters to their caregiving role. Grandchildren caregivers exhibited the ability to adapt to caregiving situations and develop coping mechanisms that allowed them to be successful caregivers. Service professionals may want to include grandchildren caregivers in established support groups, caregiver programs, and enhance caregiver resources to support the generational needs of grandchildren caregivers in their 20s. / Ph. D.

Caregivers of family elders have diverse needs, many of which are not being met sufficiently. The purpose of this study was to analyze the congruency between family policy and the needs of family caregivers. Based on the rational policy model, a normative policy analysis of the economics of family caregiving, both its costs and benefits to individual families, corporations, and to society, was provided. A dynamic theoretical framework incorporating the social ecological perspective, role theory, and life course approach, was used to critique the effectiveness of Family and Medical Leave Act (FMLA) of 1993 (P.L. 103-3) and the National Family Caregiver Support Program (NFCSP) of 2000 (Title III-E and Title VI-C). Combined, FMLA and NFCSP are effective in meeting the wide range of informal caregivers' financial, training, and support needs. The workplace-related policies of FMLA speak more to the financial assistance - albeit minimal - and work environment-structural components of caregiver support, while NFCSP pertains more to the training and supportive aspects of family caregiving support. However, workplace policies in support of family caregivers should be more individualized and current caregiver support programs should be expanded to align more closely with the needs of employees and citizens. / Master of Science

Yes / Objectives: To establish the prevalence of loneliness among family caregivers of people with dementia and to identify potential risk factors for loneliness. Methods: Using data from the baseline wave of the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort study, we examined loneliness in 1283 family caregivers of people with mild-to-moderate dementia living in Great Britain. Multinomial regression was used to examine the relative influence of a series of risk factors for caregiver loneliness. Results: Almost half, 43.7%, of caregivers reported moderate loneliness and 17.7% reported severe loneliness. Greater social isolation and increased caregiving stress were linked with both moderate and severe loneliness. Better quality of relationship with the person with dementia along with increased levels of well-being and life satisfaction were associated with a lower relative risk of reporting both moderate and severe loneliness. Discussion: This study examines the prevalence and predictors of loneliness in a large sample of family caregivers of people with dementia. Notably over two-thirds of caregivers in our sample reported feeling lonely. Interventions aimed at reducing caregiving stress and supporting meaningful relationships may go some way towards helping to reduce loneliness. / ‘Improving the Experience of Dementia and Enhancing Active Life: living well with dementia. The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’

Yes / Family carers of people with dementia have reported increased caring demands during the COVID-19 pandemic. The aim of this qualitative study was to explore seven family carers’ accounts of dementia caregiving one year into the COVID-19 pandemic in England in relation to carer resilience. Themes described the complex challenges of caring during the pandemic, with interviewees burned out and ‘caring beyond capacity’ due to unmet needs within the caring role, therein highlighting the limitations of building individual resilience only. Timely practical support for carers is essential to protect their well-being and to ward against the potential consequences of carer burnout. / Economic and Social Research Council (ESRC) grant ES/V004964/1. Economic and Social Research Council (ESRC) and the National Institute for Health and Care Research (NIHR) grant ES/L001853/2. Alzheimer’s Society, grant number 348, AS-PR2-16-001. / The full-text of this article will be released for public view at the end of the publisher embargo on 22 May 2024.

This study is a multi-method, two-city, intensive, in-depth qualitative study of Huntington's disease (HD) caregivers (HDCs) in Colombia. I explored the Colombia HDCs' experience through the Hispanic culture of caring. I develop the theory of the subrogate agency based on 5 functional stages of HD from Shoulson and Fanh (1979). This study was conducted in two different regions of Colombia, Medellin and Juan de Acosta, in which high rates of HD cases have been identified. The data were collected through three methods: (a) 56 interviews with HDCs and 8 with physicians; (b) 28 participant observations of Huntington's disease sufferers (HDSs); (c) 4 interviews and 8 focus groups of 6 members each with HDCs of late HDSs. Human agency is the ability to monitor one's own action. This study showed that the gradual and serious loss of all capabilities in HDSs has a social effect on the HDSs' agency. HDSs' survival depends on the subrogation that the HDC offers to the HDS. The HDS retains self-hood, i.e. agency, through the HDC's action. This subrogation causes a paradoxical consequence, resulting in both negative and positive effects on the caregiver. The theory of surrogate agency is supported by the data. Through the progressive phases, the capacity of the sufferer for expressing suffering, and social embarrassment, as well as the capacity to fight against the illness and provide reciprocity to their caregivers, deceases. The reason is that physical and cognitive impairments, as well as depression and anger, continue to increase. The study also documented important socio-cultural differences among the study regions. For instance, HDC's solidarity was based on blood and friendship; in larger cities, HD fragmented families. The study also found that HD is taking an immense toll on caregivers, sufferers and families because they are excluded from the Colombia's Basic Health Plan.

This paper examines the caring experiences of 7 LGBT older adults in Southwestern Ontario. Up to 2 90-minute interviews were conducted with 7 participants which were then transcribed and analyzed using interpretive phenomenological analysis (IPA). Participants described life histories of discrimination and isolation, as well as contemporary experiences of medical discrimination. As a result, participants were highly skeptical of the formal care system, with only one indicating they would be willing to enter long term care. Analysis was conducted according to four themes that were identified while engaging in the interpretive phenomenological process. The research was influenced by life course theory and cultural scripts: specifically, that the current cohort of LGBT+ older adults is perhaps the first to age openly in their identity and as a result lack cultural scripts as to what they should do as they age. Questions were open-ended and asked participants about their experiences giving or receiving care, life histories of discrimination, and how their care experiences influence their plans for the future. Although no questions were directly asked about the HIV/AIDS epidemic, the legacy of the HIV/AIDS epidemic on contemporary LGBT older adults became a major theme of this paper. Other themes identified include the role that stigma and concerns about autonomy play in their plans for the future, the importance of political advocacy and community caregiving for LGBT older adults, and how LGBT older adults have developed resiliency and the practice of holding loved ones in personhood in order to cope with medical issues and death. / Thesis / Master of Arts (MA) / This paper examines the experiences of LGBT older adults giving and receiving informal care for physical or mental health conditions. It highlights themes of stigma and autonomy, the relationship between community caregiving and political advocacy, the legacy of the HIV/AIDS epidemic, and how LGBT older adults hold each other and the dead in personhood. Seven LGBT older adults from Southern Ontario were interviewed about their experiences with care, and the relationship between social structures and discrimination and their personal experiences with the medical system.