bluuebunny/crossref_metadata_2025_split huggingface dataset:
Aging immigrant family caregivers health, social engagement, and health literacy
Authors: Ramos Mary Dioise 
Published: December 2021

Abstract
Family caregiving is evolving in multiple ways. There is an increasing recognition of the role of informal or unpaid family caregivers. Extensive body of research shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. However, most evidence on family caregiving gear towards Caucasian middle-class populations. There is limited research that exists about aging immigrant family caregivers who are ill-prepared for their role and provide care with little or no support. The specific aim of this study was to assess and determine the association of health status, social engagement, and health literacy among aging immigrant family caregivers. This study utilized a non-experimental, cross-sectional, correlational design. Most of the participants are female married Asian women, who are retired, living with their spouses, and taking care of their family members more than 4 hours a day with Alzheimer’s, Parkinson’s, and cardiovascular disorder. Most participants have existing medical condition such as hypertension, diabetes, high cholesterol, and heart disease. Most participants experienced problem with sleep and difficulty falling asleep. While some participants experienced fatigue and having trouble doing regular leisure activities with others. There is an association between sleep disturbance and ability to participate in social roles and activities among aging immigrant family caregivers. Inclusion of people from different ethnicities, backgrounds, and socioeconomic position in caregiver research is vitally important. There is a need for a greater understanding of the contextual factors of family caregiving and recognizing the prevalence and characteristics of aging immigrant family caregivers.
Family Advocacy for Residents in Nursing Homes During the COVID-19 Pandemic
Authors: de Rosa Cristina , ZHou Yanjun , Lyons Amy , Chang Yu-Ping 
Published: December 2021

Abstract
To protect one of the most vulnerable populations from COVID-19, nursing homes enacted and enforced visiting restrictions and other measures to limit the spread of this communicable disease. Family members, many of whom are former caregivers, were suddenly cut off from nursing home residents, and struggled to maintain connection with their loved ones residing in nursing homes. The purpose of this study was to describe the experiences of family members of residents in nursing homes in advocating for residents and themselves during a time of uncertainty and many challenges. This study used a qualitative descriptive approach to conduct individual interviews. Ten family members of residents of two nursing homes in a Northeastern state were interviewed by phone or videoconference using a semi-structured guide. Interviews were transcribed verbatim and analyzed using Braun and Clarke’s Reflexive Thematic Analysis. Family members expressed concerns for the lockdown’s impact on residents’ psychosocial wellbeing in addition to the potential physical dangers of COVID-19. They explored creative means of meeting needs for information and interaction, but often felt that these efforts fell short of replicating the connectedness of in-person visits. Family members identified multiple missed opportunities for involvement in care, and voiced willingness to comply with infection prevention guidelines, such as maintaining distance, to be present with residents. Our findings indicate that family members advocated for residents’ interests to ensure quality care. Future research and policy should consider family members as a potential resource for providing care and companionship during times of crisis.
Family Caregiver Burden of Medication Administration for Older Adults Admitted to Home Hospice
Authors: Tjia Jennifer , Clayton Margaret , Smith Jennifer , Wood Olivia , Hurley Susan , Puerto Geraldine , Duodu Vennesa , DeSanto-Madeya Susan 
Published: December 2021

Abstract
OBJECTIVE To characterize FCG burden of medication administration for older adults in home hospice. METHODS Pilot clinical trial of a hospice-staff level communication and medication review program to facilitate goal-concordant prescribing, including deprescribing, for older adults in home hospice. Patients newly admitted to hospice were eligible if &gt;=65 years, prescribed &gt;= 5 medications and had a FCG. Exclusion criteria included being non-English speaking or having a Palliative Performance Score&lt;40. Measurements include 24-item FCG Medication Administration Hassle Scale (range 0-96) at hospice admission and at 2-, 4-, 6-, 8-weeks and monthly until death. Descriptive statistics characterize baseline FCG Hassle score. RESULTS In this actively recruiting study, n=9 patient-caregiver dyads are enrolled to date. Mean patient age is 80.6 years (range 69-101). Of 9 caregivers, 7 were female, 5 children, and 3 spouses. The majority (67%) of caregivers were extremely involved in medication management. Mean FCG Hassle Score =17.1 (SE 5.9; range 2-58), and differed between spouses (mean =5 [SE 1.7; range 2-8]) and children (mean =31.4 [SE 9.53; range 3-58]). The highest burden concern was recognizing medication side effects, followed by feeling comfortable making medication decisions, arguing with the care-recipient about when to take medications, knowing why a medication is being given and whether it is effective, and knowing when to hold, increase, decrease a dose or discontinue the medication. CONCLUSION FCGs of older adults in home hospice report different levels of medication administration hassle depending on their relationship to the patient. The most bothersome concern is recognizing medication side effects.
The Experiences of Family Caregivers of Community-Dwelling Older Adults with Dementia in Providing Daily Oral Care
Authors: Hellem Abby , Zhou Kexin , Chen Xi , Madiloggovit Jirakate , Nguyen Jennifer , Morris Rebecca , Ashida Sato 
Published: December 2021

Abstract
Individuals with dementia increasingly rely on caregivers for daily oral care over time. This study explored the experience of family caregivers of community-dwelling individuals with dementia in providing oral care and their interest in caregiver oral education using the concepts of Social Cognitive Theory. Twenty-three caregivers ages 19-80 participated in a semi-structured qualitative interview that also included a structured questionnaire. Majority of caregivers were female (83%) with an average age of 56 years; 29% were spouses. Fifty-four percent of care recipients had natural teeth only, 42% had teeth and dentures, and 4% had dentures only. Caregivers were generally knowledgeable about the importance of oral health, but some expressed a lack of knowledge in how to perform oral care for others. Caregivers reported high levels of outcome expectation, agreeing that providing oral care would improve care recipient’s oral health. Caregivers expressed mixed levels of self-efficacy; many cited reduced self-efficacy due to resistance or refusal of care. Quantitative data showed that higher confidence in knowledge and oral care skills was associated with greater confidence in providing oral care (r=0.726, p&lt;0.001). Intent to participate in a caregiver oral health education program was associated with positive outcome expectations (r=0.73, p=0.007) and desire to learn the signs and symptoms of mouth pain and infection (r=0.72, p=0.009). Increasing family caregiver’s oral health knowledge and skills, outcome expectations, and self-efficacy to provide care may help improve the oral health of persons with dementia. Additional qualitative and quantitative data and implications for practice will be presented.
"Locked Out of Caregiving": A Case Study of Dementia Caregiving During the Covid-19 Pandemic
Authors: Wood Kristie , Suizzo Marie-Anne 
Published: December 2021

Abstract
It is unclear how ambiguous loss in dementia caregiving is impacted by conditions of the Covid-19 pandemic. Ambiguous loss describes situations in which closure is impossible and ambiguities within a family system ensue. Two situations of ambiguous loss exist. In the first type, one is psychologically absent, yet physically present, e.g. when one has dementia. In the second type, one is physically absent but psychologically present, e.g. moving to a nursing home. Ambiguous loss theory was applied to longitudinal interviews with an adult-child caregiver (age=52) of a mother with dementia, who resided in memory care during the Covid-19 pandemic. Theoretical analysis revealed both types of ambiguous loss were experienced in the dementia caregiving relationship. This was embedded within ambiguous loss type 2 due to the Covid-19 pandemic, e.g. social distancing and quarantine practices led to physical estrangement from others and ambiguity ensued about when, or if, estrangement would end before resulting in death. Further, the coping mechanisms defined in the ambiguous loss framework: restructuring identity, finding meaning, gaining mastery, increasing ambivalence capacity, reframing attachments, and gaining hope, were compromised due to overarching ambiguous loss attributed to the pandemic. Continued panic and frustration regarding lack of communication with and access to the memory care center instilled a sense of being “locked out of caregiving.” Findings suggest dementia caregivers may experience both types of ambiguous loss compounded during the Covid-19 pandemic, suspending grief and coping processes, and inciting poorly understood needs and challenges that must be better understood to support dementia caregivers.
A Natural Experiment Created by Pandemic Restriction: Comparing In-Person, Hybrid, & Teletherapy Formats
Authors: Wharton Tracy , Paulson Daniel 
Published: December 2021

Abstract
The FL-REACH intervention for families in early stage post-dementia diagnosis was originally adapted from the REACH II program for use in an outpatient clinic. Pandemic restrictions forced an adaptation to a teletherapy format. The timing of changes allowed comparison of caregivers who participated in clinic (n=10), switched modalities mid-treatment (n=7), and participated as teletherapy (n=14). Groups were similar in age range, gender, and relationship, with both spouses and adult children participating. Participants in the fully online group were more likely than others to have high school or trade school education than to have graduated from college. All participants in the in-person and hybrid groups had incomes over $40,000/year, while 36% of the online sample had less household income, were more likely to be Hispanic-identifying (43% versus 6%), and had higher burden scores (M=41.43 versus M=32.56 in person, M=29.86 hybrid) and lower preparedness scores (M=19.86 versus M=22.90 in person, M=28.14 hybrid) at baseline (p&lt;.05). The intervention proceeded with the same intervention dosage (8 hours total), and outcomes were essentially comparable, with all groups showing statistically significant improvement on measures of preparedness, burden, and risk. While in-person intervention helped strengthen relationships with the medical team, inclusion of family via telehealth provided opportunity for a more culturally responsive and inclusive engagement, although there remain questions regarding reasons for differences at baseline. Identification of differences in key outcomes for direct comparisons between in-person, hybrid, and teletherapy interventions are limited in the evidence base, making this a unique study at an important moment in time.
Caregiving during the Covid-19 pandemic: Factors associated with caregiver stress and cognition
Authors: Turner Rachael , Harrington Erin , Reese-Melancon Celinda 
Published: December 2021

Abstract
Caregivers are critical in helping persons with dementia (PWD) live at home longer, but the caregiving experience is associated with increased risk of physical (Vitaliano et al., 2003; Son et al., 2007; Fonareva & Oken, 2014) and cognitive decline among caregivers (Pertle et al., 2015; Lathan et al., 2016; Vitaliano et al., 2017). The present study examined the caregiver experience during the time of the Covid-19 pandemic including factors associated with caregiver stress, burden, and self-reported cognition (i.e., prospective and retrospective memory errors). In a sample of 56 caregivers of PWD, caregiver stress was positively associated with reports of greater life change resulting from Covid-19 and a greater frequency of care recipient depressive and disruptive behaviors; however, caregiver stress was not associated with care recipient memory problems. Additionally, caregiver burden was negatively associated with ratings of preparedness for the pandemic, but not with availability of support services or the amount of time spent caregiving. Further, frequencies of prospective and retrospective memory mistakes were positively associated with perceived stress, but not with caregiver burden. These findings reveal that caregivers of PWD report greater experiences of stress associated with the Covid-19 pandemic and other facets of their caregiving responsibilities (e.g., care recipient depressive and disruptive behaviors, frequency of memory mistakes). This work is a first step in identifying areas in which caregivers need assistance and expanding the literature on caregiver cognition by measuring self-reported everyday memory performance.
Direct-to-Caregivers Research Dissemination: A Novel Approach to Targeting End-Users
Authors: Lindquist Lee , Liggett Anna , Ramirez-Zohfeld Vanessa , Baharlou Shahla 
Published: December 2021

Abstract
Dissemination of geriatrics research usually occurs through conference presentations or publications viewed by colleagues in the same field. Older adults and their family caregivers have limited direct access to research findings. We sought to pilot a direct-to-caregiver workshop with the intent to disseminate geriatrics research directly to family caregivers of older adults. As part of an academic national conference, an ‘Updates in Geriatrics Research’ workshop is presented as a compilation of innovative research published in the prior year. We distilled workshop content into a lay format which was presented to family caregivers at two community-based caregiver symposiums. Mixed method surveys were completed by family caregiver attendees with open-ended responses analyzed using content and constant-comparative techniques. Of the 29 survey respondents, all were female, mean age 58.9 yrs. (range 52-72), providing care to older adults, mean age 87.2 years (range 66-97). Respondents unanimously identified learning information pertinent to their care recipient. When asked: Do you feel that direct-to-caregiver research dissemination is useful, all respondents selected yes. Open-ended responses for reasons why revealed two main themes: 1.) Creating informed caregivers: “Caregivers need this information in their toolbox.” and 2.) Empowering caregiver-advocates: “The more we know, the better we can advocate for our loved ones and challenge their health care.” Respondents all planned on sharing information with others, specifically family, friends, and physicians. In conclusion, disseminating geriatrics research direct-to-caregivers is feasible. Researchers, who present their work for scientific conferences, should consider translating their findings into presentations for community-based family caregivers.
Anticipatory Caregiving Scale: Development and Preliminary Validation
Authors: Weber Kendall , Qualls Sara 
Published: December 2021

Abstract
Background: As public awareness of family caregiving has grown, adults likely anticipate the role they may play as a caregiver for an aging loved one. Although anticipatory planning for caregiving has been studied, no measure of multiple dimensions of the anticipated caregiving experience exists. The purpose of the present study is to develop and validate the Anticipatory Caregiving Scale (ACS), an assessment of adult children’s attitudes toward and level of expectation surrounding their potential role as an informal caregiver to a parent or parent-in-law. Method: The ACS consists of six subscales that assess multiple factors that may influence willingness to or expectations about taking on a caregiving role: affect surrounding future caregiving, anticipated lifestyle interference, self-efficacy surrounding future caregiving, anticipated caregiving resources, endorsement of norms of family care which influence anticipated caregiving, and the relationship quality, current and anticipated, with the potential care recipient. A sample of 540 adults aged 18 and over recruited online completed the ACS, along with scales to assess convergent, discriminant, and concurrent validity. Results: Overall, the ACS and its subscales demonstrated good reliability and validity, established through internal consistency, and convergent, discriminant, and concurrent validity. Discussion: The ACS fills a gap in the current literature by providing a comprehensive, multidimensional assessment examining expectations about one’s potential caregiving experience, specific to the adult child-parent dyad. Future studies should examine the psychometric properties of the ACS in a more diverse population of adults across different settings and assess the temporal stability and criterion validity of the scale.
Parenting Style in Childhood and Mental Health Outcomes of Caregiving in Middle and Later Adulthood
Authors: Liu Yujun , Hughes M Courtney , Baumbach Abby 
Published: December 2021

Abstract
Objectives. This study examined the association between remembered parenting style of both mothers and fathers in childhood and mental health outcomes of caregiving in middle and later adulthood. Methods. Data were from the Midlife in the United States (MIDUS) study, a national survey that included 7,108 participants aged 24 to 75 years at baseline. The sample analyzed in the current study included 244 MIDUS participants who had given personal care to their mothers or fathers for one month or more during the last 12 months in the second and third waves. Parenting style variables, which included maternal/paternal affection and maternal/paternal discipline, were from the first wave; mental health outcome variables, which included emotional distress, depressive symptoms, and life satisfaction, were from the second and third waves. Multiple regression and multilevel modeling were applied using R. Results. Maternal affection was negatively associated with emotional distress. Paternal affection was negatively associated with depressive symptoms. The associations between maternal/paternal discipline and mental health outcomes were not significant. Among the caregivers who provided care for parents, those who had mothers with high affection in childhood experienced a lower level of emotional distress, those who had fathers with high affection experienced a lower level of depressive symptoms in middle and later adulthood. Discussion. Our findings have advanced the understanding of the long-term consequences of parenting style in childhood on mental health outcomes among family caregivers in later life. The results have implications in the development of interventions focusing on mental health outcomes among family caregivers.
Cognitive Frailty And Risk Of Functional Disability In Older Japanese Adults: A 4-Year Prospective Study
Authors: Chen Sanmei , Honda Takanori , Chen Tao , Kishimoto Hiro , Kumagai Shuzo , Narazaki Kenji 
Published: December 2021

Abstract
Background: Cognitive frailty is a newly proposed clinical entity, referring to concurrent cognitive impairment and physical frailty in the absence of dementia. The clinical significance of cognitive frailty remains poorly understood. We aimed to investigate the association between cognitive frailty and functional disability in older adults. Methods: A total of 1,644 non-demented older adults aged ≥65 years (mean age: 73 ± 6 years; men: 41.8%) and without functional disability at baseline were followed-up for 4 years. Cognitive frailty was defined as the presence of both physical frailty (based on the modified Cardiovascular Health Study criteria) and cognitive impairment (Mini-Mental State Examination score of &lt;24 points). Functional disability was identified using the database of Japan’s Long-term Care Insurance System. Association between cognitive frailty and functional disability was assessed by using the Cox proportional hazard models. Results: During the follow-up, 152 participants were identified as being functionally disabled. There was a significant interaction between physical frailty and cognitive impairment on the development of functional disability (P &lt;0.1). Compared with being robust both physically and cognitively, the hazard ratio (95% confidence interval) of functional disability was 8.40 (4.05-17.42) for cognitively frailty, after adjustment for age, sex, education, living alone, smoking, drinking, number of comorbidities (hypertension, stroke, chronic heart disease, diabetes, chronic kidney disease, poor hearing, poor vision, osteoarthritis or rheumatism, minor trauma fracture, or cancer). Conclusion: Cognitive frailty was associated with an increased risk of functional disability in community-dwelling older adults. Cognitive frailty could be an underrecognized risk factor for functional disability.
Clinical Geriatrics as a Team Sport: Fostering Interprofessional Experiences in the Community
Authors: Picella David , Woods Diana 
Published: December 2021

Abstract
Team-based care is necessary to provide better healthcare outcomes for the complex needs of older adults. Shared clinical learning experiences prepare practitioners to work in collaborative partnership to achieve optimal outcomes. To promote collaborative partnership, we established interprofessional community based clinical experiences with older adults at home, in assisted living and in skilled nursing facilities. One nurse practitioner faculty member was paired with 2 students for each clinical experience day. Initially these were face-to-face encounters, however, with the onset of COVID-19, all high-risk encounters were converted to a virtual modality. The clinical encounters focused on the Age Friendly Model (4M). Post clinical discussions and recommendations focused on interprofessional treatment plans. A REDCap(TM) survey was completed by all student participants for program evaluation. Of the 14 surveys sent, 11 were completed; 10 (77%) females; 3 (23%) males; 7 (50%) family practitioner students; 7 (50%) adult-gerontology nurse practitioner students. Four had previous home health experience (14%), and 10 had none (86%). 4M Likert scale (1-5) means were “what matters” = 4.27, medications = 4.18, mentation = 4.09, and mobility = 4.09. Students found the overall experience valuable (mean = 4.27). Of 11 students, 3 (27%) were involved telehealth experiences. Students found real community based clinical experiences to be very enlightening, offering a different perspective, and altering their appreciation for the everyday life of the older adult. Future plans include adding social work and physical therapy students to these clinical experiences to enhance interprofessional education.