Caring for a Family Member With Mild Dementia: Perceptions, Connections, and Relational Dynamics With the Sacred

Researchers define spirituality as the search for or connection with the “sacred”, which is transcendent and considered blessed, holy, or revered. For some, the sacred is connection with a divinity (e.g., God, gods) and for others, a close relationship with something else bigger than themselves (e.g., the Universe, Nature, a life philosophy). Current research reports that family caregivers with a strong connection to the sacred, as compared with those who do not, have fewer symptoms of depression, more positive perceptions of the caregiving experience, improved coping, and bolstered resilience. However, there is limited research on the impact of spirituality on the perceptions of familial caregivers whose loved ones have recently been diagnosed with dementia. In this study, 27 family caregivers of persons with mild dementia (CDR=1) were interviewed using the Dimensions of Caregiving Interview (DCI, McGee & Carlson, 2013). The DCI identified positive psychological aspects of the caregiving experience, including spirituality. Three heuristic themes emerged from Directed Content Analysis: perceptions about the sacred reflect variability in the early part of the caregiving journey; specific characteristics, traits, and functions of the sacred shape caregiver coping and adjustment; and the relational dynamics between caregivers and the sacred inform adaptation. Recommendations for clinical practice and additional research are provided.

Burdens among familial caregivers of stroke survivors: a literature review

Purpose This paper aims to identify and examine burden(s) among stroke survivors’ familial caregivers for the purposes of future mitigation of such burdens. The purpose is so because these caregivers become the persons responsible for monitoring the daily living activities of their patients and are thus tasked with providing and managing a whole host of recovery, therapy and re-integrative activities to rebalance and re-establish the physical, mental and social well-being of patients. Design/methodology/approach This literature review summarized and synthesized existing literature about the burden(s) caregivers experience and the effects upon them across four primary spheres of influence. Findings Familial caregivers of stroke survivors suffer from high levels of “care burden” because they are the primary participant in the planning and provisioning of care to the patients. Care burden is examined across four primary spheres of influence: physical, psychological, social and economic impacts. The current review shows that familial caregivers experience substantive impacts across all four spheres. Originality/value A professional multidisciplinary team should support caregivers of stroke survivors. To do this, support should be considered among the patient’s overall family system, as well as expanded to address and consider the specifically designated caregivers’ social circles which at a minimum often consists of co-workers, friends and inter-familial relationships. Ideally, caregiver support would also consist of medical and professional case workers that can address further, and in an integrative delivery approach, all four of the highlighted spheres of influence to establish a “best practices” orientation to familial caregivers.

Caregivers’ role in managing hereditary angioedema and perceptions of treatment-related burden

Hereditary angioedema (HAE) is a rare genetic disease that results in recurrent, debilitating, and potentially life-threatening swelling episodes in the extremities, genitals, gastrointestinal tract, and upper airway. Patients can experience significant burdens related to their disease. Informal or familial caregivers often support patients with HAE and likely share in the disease-related burdens, although there are limited HAE caregiver‐focused reports in the scientific literature. In the United States, we conducted an online survey of adults caring for an individual with HAE to better understand their experiences with the disease and identify psychosocial impacts of providing care for a patient with HAE. Thirty caregivers provided responses to the survey. Most caregivers were family members of the care recipient and many had HAE themselves. Caregivers reported participating in a number of medical-related tasks and experiencing some burdens as a result of caring for a person with HAE.

Bien accompagner la fin de vie: Medical, Religious and Spiritual accompagnement in Simone de Beauvoir’s Une mort très douce

With its rise to prominence in the medical humanities canon, there has been a surge in bioethical readings of Simone de Beauvoir’s Une mort très douce (1964). However, such readings have tended to foreground binary analyses of the medical and ethical topoi found in the text. Moving away from such approaches, this article reads the care dynamics in Une mort through the lens of accompagnement by analysing the care provided by the medical, religious and familial caregivers depicted in the text. Through the juxtaposition of these three literary depictions of care, the article argues that “presence” is the fundamental component of an active accompagnement that seeks to care holistically for a patient at the end of their life. In calling for greater reflection on the place of accompagnement in care provision, the article also emphasizes the role of literature in facilitating this reflective process.

Filial Piety in a Modern Age

With an increasing number of Alzheimer’s disease patients in Singapore, complications related to the degenerative disease have become highly relevant. Standing out among these complications are inflated caregiver burden resulting from the cultural expectations associated with filial piety. Filial piety, a value ingrained in Chinese culture, requires adult-children to display love, obedience, and respect towards their parents as well as provide physical care when required (Bedford, 2019). Expectations associated with filial piety, however, have been associated with severe caregiver burdens that persist even after patient institutionalisation (Whitlatch, 2001). Expectations to provide care presents numerous challenges for adult-children of patients: economic instability, psychological exhaustion, and social isolation (Lai, 2009; Langda, 2011; Win, 2017). These implications associated with caregiving are heightened when the patient being cared for is diagnosed with Alzheimer’s, as the disease has a unique cognitive-degeneration component that inhibits an individual from conducting independent actions after a certain point (Pratt, 1985). This article aims to shed light on the relationship between the level of involvement and the severity of caregiver burden among familial caregivers of Alzheimer’s patients in an effort to identify how to better support familial caregivers of Alzheimer’s patients. Through the use of a quantitative correlational analysis, a relationship between the two data points of involvement level and burden level was established. This research serves to identify a potential problem, not propose methods of reconciliation. While the data collection process for this study was inhibited by the COVID-19 pandemic, theoretical data is provided in an effort to develop new understandings and draw hypothetical conclusions. Keywords: Alzheimer’s, Filial Piety, Familial Caregiver, Institutionalisation, Caregiving Burden, Correlation, Adult-Child Caregiver

Language, Social Pragmatic Communication, and Childhood Trauma

This case focuses on the effects of trauma on the language and social pragmatic communication of a 10-year-old girl who was one of the many children separated from familial caregivers between 2016 and 2019 when she and her parents came to the U.S. from Central America seeking asylum due to gang violence and economic reasons. The child spent 8 months in the detention center without her parents and then was transferred to a foster home where she suffered neglect as well as physical and psychological abuse. This case study focuses on the long-term effects of structural violence and maltreatment on child development, and specifically on language and social pragmatic communication.

Health Literacy among Non-Familial Caregivers of Older Adults: A Study Conducted in Tuscany (Italy)

Many older adults who live at home depend on a caregiver. When familial support cannot provide the necessary care, paid caregivers are frequently hired. Health literacy (HL) is the knowledge and competence required of people to meet the complex demands of health in modern society. The aim of this study is to assess the HL level of paid non-familial caregivers who were enrolled through two different sources: from the homes of assisted people in two Tuscan health districts (first sample) and during job interviews in a home care agency operating in Florence (second sample). The two different recruitment contexts allow us to provide a broader view of the phenomenon, presenting a picture of the HL level of those who are already working and those who are looking for a new job in this field. One-on-one face-to-face interviews, which include the administration of the Newest Vital Sign (NVS) to measure HL, were conducted. Recruitment resulted in 84 caregivers in the first sample and 68 in the second sample. In the first sample, the mean age was 51.2 ± 9 years; 94% of the participants were women. A high likelihood or likelihood of inadequate HL (i.e., a low level of HL) was found in 73.8% of cases. In the second sample, the mean age was 43.7 ± 11.5 years; 83.8% of the participants were women, and 80.9% had a low level of HL. In both samples, HL was statistically associated with the level of understanding of the Italian language. In conclusion, inadequate HL is an under-recognized problem among non-familial caregivers. Educational programs that aim to increase HL skills could be an effective approach to improving the qualification of informal healthcare professionals.