Grounded in the life course perspective, this study examined stress among long-distance caregivers, asking whether stress levels vary by family relation to the care recipient or by geographic distance. A growing older adult population forecasts a corresponding need for caregivers. Although family members are the primary source of care for older adults, our population has seen high rates of mobility among both adult parents and their children, increasing the geographic distance between them. Given that the number of children per family has decreased, geographically distant children may be the only available family members to help frail, aging parents. Older adults without children available may have to rely on other family members, some of whom also live at a distance, in times of need. Caregivers who live at greater distances may have more difficulties providing care to their loved ones than those who live closer, and they may face greater stress than caregivers who live nearby. Further, because the child-parent relationship reflects the strongest kin obligation, child caregivers may have a higher likelihood of caregiver stress than nonchild caregivers. Research questions were addressed using data from a nationally representative survey of long-distance caregivers conducted in the Fall of 1996 by the National Council on Aging (NCOA) in collaboration with Matthew Greenwald and Associates of Washington, DC. Child caregivers (n=98), those whose care recipients are parents or step parents, were compared to nonchild caregivers (n=74), those whose care recipients are caring for grandparents, siblings, other relatives, or friends. Caregivers in both groups provided comparable care, such as helping with decision making, advice and information, making needed arrangements, and providing emotional support. Hierarchical multiple regression was used to assess the amount of variance explained by relation type and geographic distance after controlling for caregiver income, caregiving intensity, gender, care duration, and care recipient health. Bivariate relations suggested that caregivers with higher income give significantly less intense care, and that the passage of time may lessen stress for caregivers. Results of the multivariate analysis showed that relation to care recipient was a significant predictor of caregiver stress, with adult children showing higher levels of stress. Caregiver stress, however, was not greater for caregivers who lived farther away from care receivers. Using nationally representative data, the study documented the stress of long-distance caregivers, particularly adult children, thus suggesting the need for additional research and possibly programs to alleviate that stress. / Graduation date: 2003

In 2050, global estimates indicate that 139 million people will have dementia. Responsible for 60% to 80% of dementia cases, Alzheimer’s disease is the fifth leading cause of death in American adults aged 65 plus and one of the top ten leading causes of death in the United States (U.S.) overall. The clinical manifestations of Alzheimer’s disease expand the nature of the problem from the individual to caregivers. More than 11 million people living in the U.S. provide informal, unpaid care for a loved one with dementia. In recent years, this care equated to an average of nearly 17 billion hours of work. Research shows increased levels of stress, depression, other urgent health issues, and ultimately death, in Alzheimer’s/dementia caregivers compared to non-carers, especially in women. As such, caregivers inadvertently become “invisible second patients,” often neglecting their own health, while focusing on the needs of the care recipient. Enhancing the quality of life and protecting the health and well-being of caregivers is not only essential for their own livelihood, but that of the person living with the condition, as well as communities, healthcare systems and societies, globally. YouTube is a ubiquitous and powerful communications vehicle that is well-positioned to help achieve this goal. With billions of video views occurring daily across 100 plus countries and 92% of viewers asserting that they access information and gain knowledge through the social media platform, it is clear that YouTube appeals to viewers of all backgrounds and literacy levels. There is a substantial amount of research characterizing the content of YouTube videos related to various health topics and caregiving with respect to conditions other than Alzheimer’s; however, studies describing YouTube videos about Alzheimer’s and related care provision are rare. This study intends to fill critical lacunae in the scientific literature by examining the sources, speakers, formats, length and content of the most widely viewed YouTube videos surrounding Alzheimer’s/dementia caregivers through a cross-sectional, descriptive analysis. On October 9, 2022, a clean web browser and YouTube search history were used to locate and select the videos for the study by way of the search term, “alzheimer,” where the YouTube filter was set to sort by view count. After exclusions, a sample of N= 100 of the most highly viewed videos, collectively viewed N= 146,950,160 times, was identified for coding. The results indicated that the average video duration was 11.68 (SD = 16.54) minutes (range = 0.13–87.45 minutes). Most videos (n= 47) were one to four plus minutes in length. More than half (n= 54) of the videos examined originated in the U.S. Videos with Multiple (combination of) Sources comprised the source type found in highest frequency (n= 52) and corresponding cumulative views (>68%), whereas only n= 1 video was posted by a Government Source, securing a mere 0.47% of the views. Compared to other formats, videos with Multiple Formats were found in greatest frequency (n= 85) and number of views (~93%). Videos where the primary speaker was a Layperson (n= 51) garnered the most views (~77%) versus other speaker types. The results also revealed content most and least likely to be covered and viewed. The highest coverage and views for topics related to Alzheimer’s dementia outweighed those of caregiving as follows: Alzheimer's Awareness (n= 99 videos), 99.89% of cumulative views; overall Assessment, detection, diagnosis and/or screening (n= 93), ~97% of views; Warning signs (n= 86), ~94% of views; Symptoms (n= 87), 94% of views; versus Alzheimer’s dementia family/informal caregivers (n= 45), ~34 % of views and caregiver involvement (n= 42), ~32% of views. In addition, overall attention to caregiver burden and maintenance of caregiver health and well-being was weak and that of advocacy efforts (plans, policies, legislation, proceedings, etc.) for the health, well-being and quality of life of carers and people living with Alzheimer’s was essentially non-existent. Contact information (n= 97) was regularly provided to potentially aid in viewer mobilization (~80% views); however, it was rarely connected to entities providing caregiver-specific supports and assistance. Three quarters of the videos (83% of the views) did not have citations. Questionable information was found in approximately one quarter of the videos (with >20% of cumulative views). Examples of questionable information included unproven available treatments such as intermittent fasting, diet modification and supplements, herbs and coconut oil to potentially halt or reverse the deleterious effects of the condition. Strategies and recommendations were presented relevant to a longer-term research agenda; policies and legislation to advance Alzheimer’s/caregiving initiatives; collaborative approaches to care and educational programs; and training for video producers and viewers about respective, optimal dissemination and evaluation of credible and authoritative health information on YouTube. YouTube is a welcome, familiar and accessible communications vehicle that should be leveraged to better understand, advocate for and deliver medically accurate, on-demand critical supports, skill-building and educational programs to carers for people living with Alzheimer’s everywhere, who are overwhelmed, pressed for time and in dire need of assistance. YouTube represents an efficient, cost-effective means through which to improve the health outcomes and quality of life of caregivers, as well as their loved ones with Alzheimer’s.

published_or_final_version / Social Work and Social Administration / Doctoral / Doctor of Philosophy

The purpose of this project was to examine whether or not caregivers who own pets experience less loneliness, depression, anxiety and stress as compared to caregivers who do not own pets. Quantitative data was obtained through a sample survey of 150 random caregivers served by Inland Caregiver Resource Center (ICRC). Qualitative data was obtained through five open-ended questions included in the survey. The study found a significant increase in loneliness among caregivers who own pets.

Alzheimer's Disease (AD) is among the most prevalent of the dementias and it is anticipated that much of the care required for the dependent patient will be provided in the home setting by a caregiver. The purpose of this study was to identify the importance of needs related to caregiving and the level of satisfaction of those needs related to the caregivers of Alzheimer's victims. The theoretical framework for this study is Dorthea Orem's "Self-Care Deficit Theory."The sample was 18 caregivers who attended one of three Alzheimer's Support Group meetings held in three central Indiana cities. Human subjects rights were protected. The Home Caregiver Needs Survey (HCNS), Hileman, 1990, was used to identify the information, household, patient psychological needs of the and care needs, personal and caregivers of Alzheimer's patients and to determine if these needs are being adequately met. Findings included: (a) the caregivers perceived the need for information, patient care, personal, spiritual, psychological need to be somewhat important to important; teach, assist and support caregivers throughout the and (b) satisfaction of the needs indicated that the caregivers were somewhat satisfied to satisfied with the needs presented. Implications call for: (a) Nursing intervention to caregiving experience. (b) Home health care agencies and senior citizens action groups to lobby for support and programs to assist caregivers. / School of Nursing

Thesis (M.N.)--Memorial University of Newfoundland, 1998. / Bibliography: leaves 123-132.

Thesis (MEdPsych (Educational Psychology))--University of Stellenbosch, 2007. / Research regarding caregivers in institutions for people with intellectual impairment has traditionally focussed on aspects of pathology, such as stress and burnout. In the past three decades there has been a shift towards a stronger focus on individuals' competencies and strengths. This paradigm shift has contributed to the development of the term ‘Quality of Life’. This study focuses on the perceptions of formal caregivers in an institution for the intellectually impaired about their Quality of Life. The aim was to understand the selfperceived quality of life of staff caring for adults with intellectual disabilities using Positive Psychology theories. Based on fortigenic assumptions regarding human functioning, the influence of stress on formal caregivers and also positive experiences and the factors that enable these caregivers to rise above hardships of their occupation, were investigated. This qualitative interpretive study was conducted in an institution for adults with intellectually impairment and twelve caregivers at the institution willingly participated. Data were generated through structured open-ended, informal and a focus group interview and later analysed thematically. The themes discussed in the study evolve around the caregivers’ perception of 1) their definition of quality of life, 2) their current quality of life, 3) the negative factors, stressors, positive experiences and psychofortological factors impacting on their quality of life, and 4) possibilities for improving their quality of life. Based on the relation between the above mentioned themes, the quality of life of the caregivers appears to be a product of their relationship with the adults with intellectual disabilities. Therefore, the findings indicate a paradox of care-giving where the participants not only report on care-giving, but also on care-receiving within their relationship with the adults with intellectual disabilities. In this relationship care-giving seems to be a fortigenic factor for the most of the participants and also a means for interpersonal flourishing. On the basis of these findings several recommendations are made for further research, with a view to striving towards improving the quality of life of staff caring for adults with intellectual disabilities.

Indiana University-Purdue University Indianapolis (IUPUI) / The number of patients with chronic heart failure (HF) is at an all-time high and the incidence is expected to increase as our population ages. HF patients experience impaired cognition, exertional shortness of breath, and persistent fatigue; therefore, family members are needed to assist with their care at home. Although existing literature suggests that HF caregivers experience negative physical, mental, and social outcomes, there is a lack of studies guided by a conceptual model to determine factors associated with these outcomes. The purpose of this study was to determine factors associated with HF caregiver depressive symptoms, life changes, and quality of life guided by a conceptual model derived from Lazarus and colleagues’ transactional approach to stress. Psychometric properties of a new HF caregiver-specific quality of life (HFCQL) scale were also determined. Using a descriptive design, a convenience sample of 100 HF caregivers was interviewed by telephone using established measures along with the new HFCQL scale. The 16-item HFCQL scale, which measures physical, psychological, social, and spiritual well-being demonstrated evidence of internal consistency reliability (alpha = .89); 2-week test-retest reliability (ICC = .83); construct validity, as evaluated with factor analysis (loadings > .32) and hierarchical multiple regression (59% variance, p < .001); and criterion validity, as shown with significant (p < .001) correlations with the Bakas Caregiving Outcomes Scale (r = .73), SF-36 general and mental health (r = .45; .59), and a single overall QOL item (r = .71). Using hierarchical multiple regression, the model constructs accounted for 35% variance of depressive symptoms, 46% variance of life changes, and 59% variance of HFCQL (p < .001). Factors significantly associated with these outcomes included caregiving task difficulty, uncertainty, social support, and threat appraisal. Support for the conceptual model was provided, and potential areas for intervention development were identified. The new HFCQL scale showed potential as a quality outcome measure in HF caregivers, and might be used to screen HF caregivers for poor quality of life. Further research using the proposed conceptual model and the HFCQL scale is warranted. Tamilyn Bakas, DNS, RN, Chair

published_or_final_version / abstract / Social Work and Social Administration / Doctoral / Doctor of Philosophy

The purpose of the study was to investigate the lived experiences of young people living with mental healthcare users (MHCUs) in order to gain insight into their needs and how their daily coping can be maximised. A qualitative, descriptive phenomenology study was undertaken, with face-to-face, audiorecorded individual in-depth interviews conducted with 10 participants aged between 19 and 23 years, at their homes. Participants were recruited from one of the local health clinics in Dikgale area, Limpopo province, where the MHCUs collect medication and attend follow-up medical reviews. Non-probability purposive sampling technique was used to select the sample size. The following were the objectives of the study:  To explore and describe the lived experiences of young people living with MHCUs.  To determine the coping strategies of young people living with MHCUs. Five themes and 12 sub-themes emerged from the study. The findings of the study revealed that young people were faced with psychological effects, caring demands and responsibilities, effects on their schooling performance, and lack of coping and support. The study results informed recommendations to the psychiatric nursing services on the needs and support to be provided to these young people in order to ensure maximum coping in their life situation. / Health Studies / M.A. (Nursing Science)