Caregiver Preparedness Research Articles

The Senior Companion Program Plus: An Innovative Training Approach for Alzheimer's Disease and Related Dementia.

African Americans adults are disproportionately affected by Alzheimer's disease and related dementias (ADRD) and are underrepresented in research about ADRD. Reducing gaps in the knowledge about ADRD in the African American community is important for addressing dementia care disparities. The existing psychoeducation interventions are often limited by cost and scalability; for these reasons, lay provider (i.e., volunteer) interventions are of increasing interest in ADRD research. The purpose of this study was to evaluate a training of African American Senior Companion (SC) volunteers (n = 11) with dementia-specific knowledge (i.e., Senior Companion Program/SCP Plus), as part of a culturally informed, in-home, psychoeducational intervention for African American ADRD family caregivers. Learning outcomes were measured pre- and post-training, using the Knowledge of Alzheimer's Disease/dementia scale (KAD), the Sense of Competence Questionnaire, and the Preparedness for Caregiving Scale. The results showed significant improvements in knowledge of Alzheimer's disease/dementia, one competence item, "It is clear to me how much care my care recipient needs", and preparedness for caregiving. Overall, the study findings suggest the SCP Plus is a promising, culturally relevant, and potentially scalable lay provider training for ADRD with potential benefits that augment the existing Senior Companion Program.

Postdischarge Caregiver Burden Among Family Caregivers of Older Trauma Patients

Caregiver burden, characterized by psychological distress and physical morbidity, affects more than 50 million family caregivers of older adults in the United States. Risk factors for caregiver burden among caregivers of older trauma patients have not been well characterized. To characterize postdischarge caregiver burden among caregivers of older trauma patients and identify targets that can inform interventions to improve their experience. This study used a repeated cross-sectional design. Participants were family caregivers for adults 65 years or older with traumatic injury who were discharged from 1 of 2 level I trauma centers. Telephone interviews were conducted at 1 month and 3 months postdischarge with family caregivers (identified by the patient as family or friends who provided unpaid care). Admissions occurred between December 2019 and May 2021, and data were analyzed from June 2021 to May 2022. Hospital admission for geriatric trauma. High caregiver burden was defined by a score of 17 or higher on the 12-item Zarit Burden Interview. Caregiver self-efficacy and preparedness for caregiving were assessed via the Revised Scale for Caregiving Self-Efficacy and Preparedness for Caregiving Scale, respectively. Associations between caregiver self-efficacy, preparedness for caregiving, and caregiver burden were tested via mixed-effect logistic regression. There were 154 family caregivers enrolled in the study. Their mean (SD) age was 60.6 (13.0) years (range, 18-92 years), 108 of 154 were female (70.6%). The proportion of caregivers experiencing high burden (Zarit Burden Interview score ≥17) was unchanged over time (1 month, 38 caregivers [30.9%]; 3 months, 37 caregivers [31.4%]). Participants with lower caregiver self-efficacy and preparedness for caregiving were more likely to experience greater caregiver burden (odds ratio [OR], 7.79; 95% CI, 2.54-23.82; P < .001; and OR, 5.76; 95% CI, 1.86-17.88; P = .003, respectively). This study found that nearly a third of family caregivers of older trauma patients experience high caregiver burden up to 3 months after the patients' discharge. Targeted interventions to increase caregiver self-efficacy and preparedness may reduce caregiver burden in geriatric trauma.

Standardization of Pediatric Hematopoietic Stem Cell Transplant Patient Discharge to Reduce Readmission Rates.

Background: The time period after a pediatric hematopoietic stem cell transplant (P-HSCT) is tenuous as the patient is severely immunocompromised and awaiting immune reconstitution. Managing activities of daily living and medication administration after discharge from the hospital requires 24-hour care placing a heavy burden on caregivers and patients. Patients who do not adhere to the posttransplant regimen are at a higher risk for hospital readmission within the first 30 days of initial discharge with serious potential for life-threatening complications. The objective of this project was to improve 30-day readmission rates and caregiver readiness for discharge through the implementation of an evidence-based discharge protocol for P-HSCT patients and caregivers. Methods: This quality improvement project included development and implementation of comprehensive Pediatric Blood & Marrow Transplant Guidelines and discharge protocol for patients who received an inpatient autologous or allogeneic HSCT and were scheduled for discharge from a 16-bed inpatient pediatric hematology-oncology unit of a children's hospital in the southeastern United States. Readmission rates were captured through the hospital-monitored system. Results: The comprehensive discharge protocol was implemented for six patients, and 30-day readmission rates decreased from 27.29% to 3.57% following the intervention. Discussion: Results suggest the combination of an evidence-based discharge protocol with a focus on caregiver readiness for discharge and a 24-hour Rooming-In period can influence caregiver confidence and reduce 30-day readmission rates after initial discharge from a P-HSCT.

Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness.

Examination of caregiver preparedness for the COVID-19 pandemic can inform efforts to support caregivers in future times of global crisis. Informal caregivers of adults with dementia or severe disabilities (n = 72, Mage = 62.82years, 90.28% female) were recruited through Adult Day Centers across the United States. Caregivers responding to an online survey regarding their experiences and preparedness reported an increase in burden, stress, and time spent caregiving since the onset of the pandemic. Caregivers reported feeling prepared for typical caregiving responsibilities but felt less prepared for someone else to assume the role of primary caregiver. Multiple regression modeling indicated that resilience accounted for significant variance in primary caregiver preparedness, over and above burden, but only caregiver age accounted for significant variability in a component representing feeling prepared to delegate caregiving to another person. These findings have implications for research and applied efforts to promote caregiver well-being and preparedness.

Measuring implementation outcomes in the context of scaling up possible serious bacterial infection guidelines: Implications for measurement and programs.

Reducing the burden of neonatal sepsis requires timely identification and initiation of suitable antibiotic treatment in primary health care (PHC) settings. Countries are encouraged to adopt simplified antibiotic regimens at the PHC level for treating sick young infants (SYI) with signs of possible serious bacterial infection (PSBI). As countries implement PSBI guidelines, more lessons on effective implementation strategies and outcome measurements are needed. We document pragmatic approaches used to design, measure and report implementation strategies and outcomes while adopting PSBI guidelines in Kenya. We designed implementation research using longitudinal mixed methods embedded in a continuous regular systematic learning and adoption of evidence in the PHC context. We synthesized formative data to co-create with stakeholders, implementation strategies to incorporate PSBI guidelines into routine service delivery for SYIs. This was followed by quarterly monitoring for learning and feedback on the effect of implementation strategies, documented lessons learned and tracked implementation outcomes. We collected endline data to measure the overall effect on service level outcomes. Our findings show that characterizing implementation strategies and linking them with implementation outcomes, helps illustrate the pathway between the implementation process and outcomes. Although we have demonstrated that it is feasible to implement PSBI in PHC, effective investment in continuous capacity strengthening of providers through blended approaches, efficient use of available human resources, and improving the efficiency of service areas for managing SYIs optimizes timely identification and management of SYI. Sustained provision of commodities for management of SYI facilitates increased uptake of services. Strengthening facility-community linkages supports adherence to scheduled visits. Enhancing the caregiver's preparedness during postnatal contacts in the community or facility will facilitate the effective completion of treatment. Careful design, and definition of terms related to the measurement of implementation outcomes and strategies enable ease of interpretation of findings. Using the taxonomy of implementation outcomes help frame the measurement process and provides empirical evidence in a structured way to demonstrate causal relationships between implementation strategies and outcomes. Using this approach, we have illustrated that the implementation of simplified antibiotic regimens for treating SYIs with PSBI in PHC settings is feasible in Kenya.

Adapting and Testing the Care Partner Hospital Assessment Tool for Use in Dementia Care: Protocol for a 2 Sequential Phase Study.

Research and policy demonstrate the value of and need for systematically identifying and preparing care partners for their caregiving responsibilities while their family member or friend living with dementia is hospitalized. The Care Partner Hospital Assessment Tool (CHAT) has undergone content and face validation and has been endorsed as appropriate by clinicians to facilitate the timely identification and preparation of care partners of older adult patients during their hospitalization. However, the CHAT has not yet been adapted or prospectively evaluated for use with care partners of hospitalized people living with dementia. Adapting and testing the CHAT via a pilot study will provide the necessary evidence to optimize feasibility and enable future efficacy trials. The purpose of this paper is to describe the study protocol for the adaptation and testing of the CHAT for use among care partners of hospitalized people living with dementia to better prepare them for their caregiving responsibilities after hospital discharge. Our protocol is based on the National Institutes of Health Stage Model and consists of 2 sequential phases, including formative research and the main trial. In phase 1, we will use a participatory human-centered design process that incorporates people living with dementia and their care partners, health care administrators, and clinicians to adapt the CHAT for dementia care (ie, the Dementia CHAT [D-CHAT]; stage IA). In phase 2, we will partner with a large academic medical system to complete a pilot randomized controlled trial to examine the feasibility and estimate the size of the effect of the D-CHAT on care partners' preparedness for caregiving (stage IB). We anticipate this study to take approximately 60 months to complete, from study start-up procedures to dissemination. The 2 phases will take place between December 1, 2022, and November 30, 2027. The study protocol will yield (1) a converged-upon, ready-for-feasibility testing D-CHAT; (2) descriptive and feasibility characteristics of delivering the D-CHAT; and (3) effect size estimates of the D-CHAT on care partner preparedness. We anticipate that the resultant D-CHAT will provide clinicians with guidance on how to identify and better prepare care partners for hospitalized people living with dementia. In turn, care partners will feel equipped to fulfill caregiving roles for their family members or friends living with dementia. The expected results of this study are to favorably impact hospital-based care processes and outcomes for people living with dementia and their care partners and to elucidate the essential caregiving role that so many care partners of people living with dementia assume. ClinicalTrials.gov NCT05592366; https://clinicaltrials.gov/ct2/show/NCT05592366. PRR1-10.2196/46808.

Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention.

Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care. The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test. Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n=26, 81%) and women (n=19, 58%) and two-fifths had a university degree (n=13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn=18 vs. 20, p=0.002). No significant changes were found on caregiver burden or quality of life. The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer - A basis for developing internet-based support

Being an informal caregiver of an individual with head and neck cancer can be demanding. Still, informal caregivers can provide valuable support to patients throughout the disease trajectory. The aim of this study was to explore informal caregivers' views on their challenges and needs in attaining high preparedness for caregiving.Fifteen informal caregivers of individuals with head- and neck cancer participated in a focus group discussion or an individual interview. Thematic analysis utilizing an inductive approach was performed.The results describe the challenges that informal caregivers to individuals with head and neck cancer perceive and their needs for support in preparedness for caregiving. Three main themes were found: Challenges of being an informal caregiver, Transformation in life and Informal caregiver' needs of support and sharing care.This study contributes to the understanding of the challenges for informal caregivers to individuals with head and neck cancer in increasing preparedness for caregiving. To improve preparedness for caregiving, informal caregivers need education, information and support regarding physical, psychological and social issues for individuals with head and neck cancer.

Application of family-centered empowerment model in primary caregivers of premature infants: A quasi-experimental study.

To explore the effect of the family-centered empowerment model (FECM) on reducing anxiety, improving care ability, and readiness for hospital discharge of main caregivers of preterm infants. The primary caregivers of preterm infants who were admitted to the Neonatal intensive care Unit (NICU) of our center from September 2021 to April 2022 were selected as the research objects. According to the wishes of the primary caregivers of preterm infants, they were divided into group A (FECM group) and group B (non-FECM group). The intervention effects were evaluated with the Anxiety Screening Scale (GAD-7), the Readiness for Hospital Discharge Scale-Parent Version (RHDS-Parent Form), and the Primary Caregivers of Premature Infants Assessment of Care Ability Questionnaire. Before the intervention, there was no statistically significant difference in the general information, anxiety screening, the scores of each dimension, and total score of the comprehensive ability of the main caregivers, and the score of caregiver preparedness between the two groups (P > 0.05). After the intervention, there were statistically significant differences in the anxiety screening, the total score and total score of each dimension of the care ability, and the score of caregiver preparedness between the two groups (P < 0.05). FECM can effectively reduce the anxiety of primary caregivers of premature infants and improve their readiness for hospital discharge and care ability. To improve the quality of life of premature infants by implementing personalized training, care guidance, and peer support.

Why Psychosocial Care Matters: Parent Preparedness and Understanding Predict Psychosocial Function When Children Return to School After Cancer.

Introduction: Psychosocial impacts of cancer are well-recognized for pediatric patients but few studies examine challenges specific to schooling after diagnosis and caregiver-related factors that may influence coping. This study describes caregiver experiences of school-related psychosocial functioning and how caregiver preparedness and understanding of these challenges influence coping. Methods: Caregivers of 175 childhood cancer survivors completed a nationally disseminated survey related to caregiver preparedness, clinician-provided education, and school-related experiences. Caregiver-reported preparedness and understanding were evaluated as predictors of psychosocial coping; factor analysis was performed to identify compound scales of preparedness and understanding. Results: Caregivers reported that the cancer treatment experience resulted in their children being more stressed and anxious about returning to school (60.2% and 70.2%, respectively) and more sensitive to peers (73.4%). It also made it harder for them to socialize and fit in with peers (58.2% and 49.7%, respectively). Caregiver preparedness and understanding predicted improved psychosocial coping with regard to child stress regarding socialization, fitting in, and anxiety but not sensitivity to peers. Teacher supportiveness and caregiver perception of clinician understanding also correlated with function. Discussion: Findings highlight the importance of caregiver education and preparedness as these reliably predict child psychosocial function and coping as they return to school after a cancer diagnosis and that all children are at risk for psychosocial challenges following a cancer diagnosis. Opportunities exist for clinicians to provide more education and anticipatory guidance to families as a potential means to reduce poor coping when a child returns to school following cancer.

The Senior Companion Program Plus (SCP Plus): Examining the Preliminary Effectiveness of a Lay Provider Program to Support African American Alzheimer's Disease and Related Dementias (ADRD) Caregivers.

A culturally informed, peer-led, lay provider model, the Senior Companion Program (SCP) Plus, was implemented to decrease caregiving burden/stress and improve coping skills and social support for African American ADRD caregivers. This study reported the preliminary effectiveness of this intervention. An explanatory sequential mixed methods design was used in this study, and a randomized control trial was conducted for the SCP Plus intervention among participants in three sites (n = 20). A subsample of participants (n = 7) consented to a qualitative interview about their experiences with the intervention. Wilcoxon signed-rank tests, Friedman tests, and one-way repeated measures ANOVA were computed for quantitative analyses. Thematic analysis was used for the qualitative interviews. Results demonstrated that knowledge of AD/dementia (KAD) and preparedness for caregiving were significantly improved for all senior companions in the intervention group. Results also showed that caregivers in the intervention group reported significantly decreased caregiving burden, as well as increased KAD, satisfaction with social support, and positive aspects of caregiving. Themes from the qualitative interviews included: learning new skills about caregiving, gaining knowledge about ADRD, and benefits for the dyad. Findings from this study implied that SCP Plus was a promising model for African American family caregivers as it benefits both the SC volunteers and the African American ADRD family caregivers.

Does gender moderate resiliency variables and posttraumatic stress symptoms in informal caregivers of neurocritical care patients? An exploratory study

ABSTRACT We examined gender differences between resiliency factors (i.e. mindfulness, self-efficacy, coping, intimate care, and caregiver preparedness) and posttraumatic stress symptoms (PTSS) in informal caregivers of patients in the neuroscience intensive care unit (Neuro-ICU). Ninety-two informal caregivers were enrolled during patients’ hospitalization and completed resiliency measures at baseline, and a PTSS measure at baseline, 3 and 6 months. We conducted five ANCOVAs to explore gender and resiliency on PTSS. No significant main effects of gender on PTSS were observed across time points. However, main effects were seen for resiliency on PTSS at baseline for informal caregivers with high (vs. low) mindfulness, coping, and self-efficacy. Gender moderated the association between mindfulness and PTSS (i.e. high mindfulness at baseline was associated with lower PTSS in males compared to females at 3 months) and intimate care and PTSS (high intimate care at baseline was associated with lower PTSS in males than females at 6 months; high intimate care at baseline for females was associated with lower PTSS at 6 months than females with low intimate care). Overall, we observed associations among informal caregivers’ gender, resiliency, and PTSS, with males particularly benefitting from mindfulness and intimate care. These findings hold value for future inquiry into gender differences in this population with possible clinical implications.

The Influence of Informal Caregivers' Preparedness on Psychological Symptoms and Quality of Life Among Patients With Heart Failure And Insufficient Self-care.

Most patients with heart failure find self-care difficult to perform and rely on family caregivers for support. Informal caregivers, however, often face insufficient psychological preparation and challenges in providing long-term care. Insufficient caregiver preparedness not only results in psychological burden for the informal caregivers but may also lead to a decline in caregiver contributions to patient self-care that affects patient outcomes. Our objective was to test (1) the association of baseline informal caregivers' preparedness with psychological symptoms (anxiety and depression) and quality of life 3 months after baseline among patients with insufficient self-care and (2) the mediating effects of caregivers' contributions to self-care of heart failure (CC-SCHF) on the relationship of caregivers' preparedness with patients' outcomes at 3 months. A longitudinal design was used to collect data between September 2020 and January 2022 in China. Data analyses were conducted using descriptive statistics, correlations, and linear mixed models. We used model 4 of the PROCESS program in SPSS with bootstrap testing to evaluate the mediating effect of CC-SCHF of informal caregivers' preparedness at baseline with psychological symptoms or quality of life among patients with HF 3 months later. Caregiver preparedness was positively associated with CC-SCHF maintenance ( r = 0.685, P < .01), CC-SCHF management ( r = 0.403, P < .01), and CC-SCHF confidence ( r = 0.600, P < .01). Good caregiver preparedness directly predicted lower psychological symptoms (anxiety and depression) and higher quality of life for patients with insufficient self-care. The associations of caregiver preparedness with short-term quality of life and depression of patients with HF with insufficient self-care were mediated by CC-SCHF management. Enhancing the preparedness of informal caregivers may improve psychological symptoms and quality of life of heart failure patients with insufficient self-care.

An Outpatient-Based Training Program Improves Family Caregivers' Preparedness in Caring for Persons With Mild Cognitive Impairment: A Randomized Controlled Trial

Little is known regarding the effects of training programs on family caregivers of older persons with mild cognitive impairment because of the significant differences in outcome variables measured in the various studies in the literature. This study was designed to examine the effects of an outpatient-based caregiver training program on the preparedness, health-related quality of life, and depressive symptoms of participants responsible for caring for older persons with mild cognitive impairment. A randomized clinical trial was implemented. Of the 54 family caregiver participants who provided complete and valid data, 28 and 26 were assigned to the experimental and control groups, respectively. The experimental group participated in a researcher-developed training program that provided information on mild cognitive impairment, strategies for maintaining and promoting cognitive function in persons with mild cognitive impairment, managing their own and their care recipients' healthcare, and managing their own emotional support and stress. Outcomes (caregiver preparedness, health-related quality of life, and depressive symptoms) were assessed before the start of the training program (baseline) and at 1, 3, and 6 months after completion of the program. After controlling for baseline cognitive function of the care recipients and of caregiver preparedness, the experimental group was shown to be significantly less prepared than the control group at baseline (β = -1.41, p = .031) and better prepared than the control group at all three posttests (group differences: 1.3, 1.53, and 4.24, respectively), with the difference at the third posttest (6 months) reaching statistical significance (p = .008). No impact of the intervention on caregiver depressive symptoms or health-related quality of life was found at posttest. The training intervention in this study was found to increase the perceived preparedness of the family caregiver participants to handle various aspects of providing care to persons with mild cognitive impairment. However, no changes were found in depressive symptoms or health-related quality of life.

Exploration of meaning, motivation, and preparedness to care amongst the one-child policy generation in China.

In China there is a cultural expectation (Xiao, -filial piety) that offspring should provide care for their parents. However, the sustainability of this is threatened by the impact of the One-Child Policy (OCP) (1979-2015), which has resulted in a diminution in numbers of children available to care, rapid urbanisation and increase in the number of women in employment. In this context, the objective was to explore the motivations, meaning, and preparedness for future caregiving of offspring affected by the OCP. We adopted a constructivist position using a hermeneutic phenomenology approach and interviewed eight current and prospective caregivers aged 20-35years about future caregiving responsibilities. Data were obtained through in-depth interviews, analysed using reflective Thematic Analysis. Three prominent themes: (i) Caregiving beliefs, (ii) Caregiving conditions and (iii) Contextual factors were identified under an overarching theme "Competing pressures-meanings, motivation and preparedness". Despite the inherent stress, participants envisaged providing or organising care in the future to fulfil Xiao, and most viewed long-term care settings as unviable. Ultimately, the findings suggested that the actual performance of caregiving would not always measure up to ideal expectations, resulting in 'filial discrepancy' that is, a gap between societal expectations for caregiving to older relatives and actual caregiving performance. This could adversely impact the caregivers and quality of care provided. The findings highlighted the urgent need to develop culturally attuned services, including education and training for family caregivers, health and social care professionals.

Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results

BackgroundHigh-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress.MethodsWe conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients’ combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain.ResultsWe randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model β = 2.85, 95% CI 0.76–4.93) and all follow-up timepoints including 12 months (model β = 4.35, 95% CI 2.08–6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes.ConclusionsThis intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.

"Keep Your Chin Up, and Keep Eating": Perceptions of Barriers and Facilitators to Healthful Dietary Behaviors Among Individuals With Gastrointestinal Cancer and Caregivers.

This study explored perceptions of barriers and facilitators to healthful dietary behaviors among patients with gastrointestinal (GI) cancer and their caregivers, including caregiver preparedness, patient and caregiver self-efficacy for symptom management, and other environmental, social, and familial factors that may serve as barriers and facilitators to healthful eating. Using a concurrent mixed methods cross-sectional study design, individuals with GI cancer receiving outpatient chemotherapy and their caregivers completed surveys, dietary assessments, and interviews. Caregiving preparedness, self-efficacy for symptom management, and dietary intake were assessed using validated instruments. Dietary quality was measured using the Healthy Eating Index (HEI)-2020. In-depth interviews explored barriers and facilitators to healthful eating, symptom management, and caregiver preparedness. Twenty-seven patient-caregiver dyads completed study activities (N = 54). Dietary quality scores ranged from 26 to 81, with a median score of 43 for patients and 42 for caregivers. Thematic analysis identified three barriers to healthful eating: caregiver self-efficacy and preparedness, caregiver needs are neglected, and nutrition as a source of conflict. Overall self-efficacy scores (Mdn, [IQR]) were 69.1 (45.0) for caregivers and 75.6 (34.1) for patients. Caregiver preparedness score was 2.99 ± .87; problem areas were identified, including addressing emotional needs, fluctuating eating habits, advanced disease progression and making care activities pleasant. Despite the challenges, three main facilitators were identified: increased awareness and value of nutrition, influential others, and positive coping. Our findings suggest the importance of developing interventions that increase nutrition-related preparedness among caregivers and self-efficacy for managing treatment side effects. Future research should continue to explore the relationship between positive coping and dietary behaviors. While engaging patients and caregivers together during dietary interventions is a promising modality, strategies for maintaining personal nutrition-related goals when facing contrasting priorities between patients and caregivers should be addressed.

"Been there, done that:" A grounded theory of future caregiver preparedness in former caregivers of parents living with dementia.

Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD. A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias. Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner). Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.

EXPLORING THE ASSOCIATION BETWEEN FAMILY DYNAMICS AND PREPAREDNESS FOR FAMILY CAREGIVING AT THE END OF LIFE

Abstract The transition to providing end-of-life (EOL) care to a family member can be challenging for family caregivers as they face difficult decisions regarding medical course of treatment, increasing caregiving responsibilities, and anticipatory grief. Low preparedness for EOL caregiving is associated with higher levels of caregiver strain, increased levels of depression and anxiety, and complicated and prolonged grief after the death of the family member. Despite the breadth of caregiving research, little is known about how family relationships and interactions relate to caregiver preparedness for EOL caregiving. Thus, the purpose of this study was to explore the association between family caregivers’ family dynamics and their perceived preparedness for the transition to EOL caregiving. A sample of 173 family caregivers were recruited to complete an online, self-report survey. A structural equation model was used to analyze the association between family dynamics and caregiving preparedness. Most caregivers reported balanced family cohesion (75.1%) and family flexibility (75.7%), but low family communication and low family satisfaction. In addition, 20.2% of caregivers reported being not at all prepared for the transition to EOL caregiving. Although there was a lack of meaningful association between family dynamics and preparedness for EOL caregiving, it may be that family relationships and interactions grow more complex as families age and individuals take on new and different roles (such as family caregiving) within the family system. This study demonstrates the need for future research to develop new measures to explore how aging family dynamics relate to family caregiver experiences and outcomes.

IDENTIFYING FACTORS ASSOCIATED WITH CAREGIVER NEGLECT IN OLDER PERSONS WITH DEMENTIA

Abstract Caregiver neglect is common among older persons with dementia and is associated with significant morbidity and mortality. Despite this, little empirical research exists examining factors that contribute or prevent neglect. Our goal was to identify caregiving factors that may be associated with caregiver neglect. Data were drawn from the baseline information of 240 caregivers enrolled in the Caring for the Caregiver Network study who provided care to a family member with dementia. Caregiver depression, burden, social support, perceived mutuality with care-recipients, positive aspects of caregiving, and self-perceived caregiving preparedness, were measured using validated scales. To maximize sensitivity in our measure of caregiver neglect, we operationalized caregiver neglect as consisting of: 1) caregivers’ failure to meet care-recipients’ needs, using 8-item instrumental activities of daily living (IADL) and 6-item ADL scales, and 2) caregivers not receiving additional formal services (e.g., visiting nurses; home care aides) to address care-recipients’ unmet needs. Selection of independent variables into multivariate regression models examining predictors of neglect was based on significance in bivariate analysis (p &amp;lt; .10). Caregiver neglect was found in 29.2% of caregivers. The caregiver being male was significantly associated with greater risk of neglect. In the final adjusted model, only caregiver preparedness was found to be a significant risk factor for neglect (β = -.16 SE=.10, p &amp;lt; .05). This analysis provides the first evidence of the association between caregiver preparedness and risk of caregiver neglect. Future research should examine possible psycho-social mechanism linking preparedness and neglect to inform neglect prevention and intervention programming.