Current Caregivers Research Articles

"It Isn't What I Had to Do, It's What I Get to Do": The Experiences of Black Family Caregivers Managing Dementia.

Black family caregivers of persons with dementia experience high levels of stress that can negatively affect caregiver health outcomes and reduce caregiving capacity. However, Black caregivers tend to report low levels depressive symptoms or other negative health effects. This qualitative descriptive study aimed to identify factors that contribute to resilience among Black family caregivers. Using the rigorous and accelerated data reduction (RADaR) technique to complete thematic analysis, a team of five coders examined transcript data from three focus groups of Black current and former family caregivers (n = 17) of persons with dementia. We identified three primary factors that contributed to caregiver resilience including access to supportive environments, adaptability, and planning skills. Caregiver resistance to reporting depressive symptoms may be attributed to the strong Black woman schema. Findings from this study may be used to develop future culturally responsive interventions that support caregivers and promote family health.

Sequential mediation model of social support, care burden, and internalized stigma among family function and depression in caregivers of patients with schizophrenia: evidence from a cross-sectional study in southwest China.

There is a lack of comprehensive measurements and systematic evaluations of the depression in caregivers of patients with psychiatric disorders and the factors influencing them in China. This study aims to explore the relationship between family function and depression in caregivers of patients with schizophrenia at the individual, family, and social levels according to the ecological system theory and attachment theory. In this study, multi-stage, stratified cluster sampling was adopted to sample caregivers of patients with schizophrenia as subjects from one to three counties of four counties in Yunnan, from September 2022 to March 2023. Collecting the current caregiver's demographic data, family functions, social support, care burden, depression and internalized stigma. The results of single-factor analysis show that age, education level, relationship with patients, and the degree of self-care of patients are the influencing factors of depression of people living with schizophrenia (p < 0.05). The scores of self-rating depression scale are higher for caregivers who have not received formal education, caregivers who cannot take care of themselves and the parents, spouses and children of patients. The results of Pearson correlation analysis show that depression is positively associated with internalized stigma and care burden, and negatively associated with social support and family function (p < 0.05). The results of multiple linear regression show that after controlling age, education level, the patient's self-care capacity, and relationship with patient, the internalized stigma (β = 0.184, p = 0.01) is positively correlated with depression. The mediation effect route of family function → social support → care burden → internalized stigma → depression was significant with 95% confidence interval [-0.150, -0.01], and the chained mediation effect was 5.904%. To reduce the depression level in family caregivers of schizophrenia, apart from taking measures to improve the caregiver's family function, enhancing social support, decreasing care burden, and reducing internalized stigma are suggested.

Exploring the social and cultural aspects of Chinese family caregivers’ experience as they support loved ones with dementia transitioning into nursing homes: a qualitative study protocol

IntroductionAsian American caregivers supporting loved ones with dementia experience greater burden and more stress than other racial/ethnic groups, warranting the need for more culturally and linguistically appropriate formal support, such...

Adaptation of SafeCare, an evidence-based parenting program, for caregivers of infants in the neonatal intensive care unit

BackgroundWhile there are several parenting programs for NICU caregivers, no studies, to our knowledge, have developed parenting programs aimed at preventing child maltreatment that specifically address these parental factors: parental stress, parental self-efficacy, and positive parent-infant interaction. ObjectivesThe objectives of this study were to: 1) Identify adaptations and/or augmentations needed to optimize SafeCare® for NICU caregivers, and 2) Examine the acceptability and preliminary effects of the adapted SafeCare NICU (SCNC) program with NICU caregivers. MethodsThis study consisted of two phases: formative (phase one) and pilot (phase two). For phase one, 5 NICU former caregivers and 5 NICU staff were interviewed to make relevant, NICU-specific adaptations for SCNC. Phase two consisted of a pilot study, where 13 current NICU caregivers were enrolled in the adapted SCNC program. Outcomes included acceptability and preliminary effects of parental stress, parental self-efficacy, and parent-infant interaction. ResultsAdaptations to SafeCare consisted of adding a pre-session to discuss individualized experiences, incorporation of adjusted developmental milestones, a NICU-specific resource sheet, and individualized adaptations to activities based on relevant medical concerns. Out of the 13 participants, 8 completed SCNC (61.5 % retention rate). Participants indicated significant reductions in stress after SCNC (Parental stress index score = 61.7) compared to baseline (79.2, p = 0.02). Among participants who completed SCNC (n = 8), all stated they supported this program for implementation among NICU caregivers. DiscussionThe adapted SCNC demonstrated acceptability among NICU caregivers.

Parental emotional, social and transitional health in the first 6 months after childhood critical illness: A longitudinal qualitative study

AbstractAimTo explore the experiences and support needs of parents in the first 6 months after paediatric critical care.DesignLongitudinal qualitative design.MethodsSequential semi‐structured qualitative interviews were conducted with a sample of 28 parents in succession at 1 month and at 6 months (n = 22) after their child's discharge from paediatric critical care using purposive sampling. Data were analysed using the adapted five‐stage framework analysis.ResultsData were developed into eight synthesized themes, three domains and an overarching theme: Regaining Normalcy. Families of children requiring medical treatment at 6 months showed signs of adaption to daily care routines. The two domains were Parental Emotional Health and Parental Social Health. Parental Transitional Health, a third domain, was added to the Post Intensive Care Syndrome‐paediatric framework. Parents were forward‐looking and discussed emotional health, relating to current caregiving issues. Emotional attention was related to present challenges and concerns about current health and possible readmission to the hospital. In terms of Parental Social Health, families isolated themselves for infection control while remaining connected with families using chat applications. Parents were selective to whom they allowed access to their lives. The impact of parental transitional health was evident and emphasized the daily challenges associated with integration back to home life. Flexible work arrangements allowed working parents to support caregiving needs in the first 6 months after discharge.ConclusionIn the first 6 months after paediatric critical illness, most families reported having moved past the experiences while having provoking memories of the admission period. Parents viewed the point of normalcy as child returned to school or when all medications were discontinued. Extension of transitional support can facilitate discharge experiences between paediatric critical care and normalcy. The findings highlight the importance of understanding the medium‐ and longer‐term impact of paediatric critical care.Impact What problem did the study address? Limited understanding of long‐term parental experiences and support needs after PICU discharge. What were the main findings? Most families regained normalcy when child returns to school or when medications were discontinued. Some families continued to show signs of adaptations at 6 months after PICU discharge. Where and on whom did the research have an impact? The research has an impact on improving the understanding of long‐term parental experiences and support needs after PICU discharge, informing clinical practice, guiding policy development and shaping parental support programs. Reporting MethodWe reported this study using the COREQ guidelines.Patient or Public ContributionPrior to confirming the interview guide, three parents of critically ill children actively participated by reviewing and providing feedback on its content. They provided suggestions to refine the wording and ensure clarity to enhance the participants' understanding. By including the perspectives of these parents, we aimed to improve the overall quality and relevance of the interview guide.

The relationship between caregivers and daughters’ food and body shape scripts: A dyadic analysis

Research indicates a key role for parenting in a daughter's relationship with food and body shape. One possible mechanism for this translational process is through scripts. The present study used a dyadic design to investigate the relationship between caregivers and daughters' scripts regarding food and body shape. Caregivers (n = 40) and their daughters (n = 40) rated word lists of their current and childhood scripts and caregivers completed an additional measure of their parenting scripts. Non-dyadic analysis showed consistent correlations between daughters' current scripts and their recollections of childhood scripts, and several (but less consistent) correlations between caregivers' current scripts, their own childhood scripts and the scripts they had used as a parent. Dyadic analysis showed consistent correlations between the daughter's current scripts relating to negative eating and both positive and negative body scripts and their caregiver's parenting scripts, and between the daughter's current scripts relating to positive and negative eating and body looking positive and their caregiver's current scripts. No associations were found between the daughter's current scripts and the caregiver's childhood scripts. The results indicate that whilst daughters' current scripts relating to food and body shape are often concordant to those reported by their caregivers, they are more closely linked to what they remember from their childhoods. Further, they suggest that those scripts which do transfer between generations may be more related to body size and negative eating than food per se. Finally, the results suggest that scripts do not inevitably pass across the generations possibly due to parents choosing not to repeat the errors of their own parents or due to the role of factors other than just parenting in creating the scripts we hold.

Caregiver burden among parents of school-age children with asthma: a cross-sectional study.

To investigate the caregiver burden of parents of school-age children with asthma and analyze the factors influencing their caregiver burden. A convenience sampling method was used to select 366 parents of school-age children with asthma who visited the outpatient departments of three tertiary hospitals in Sichuan Province, China, from January 2021 to July 2021. A general information questionnaire and the Caregiver Burden Inventory (CBI) were used to assess the current caregiver burden and analyze the influencing factors. The caregiver burden score of parents of school-age children with asthma was 27 (17, 39), with 40.43% of parents experiencing moderate to high levels of burden. Detailed results of univariate analysis showed that there were significant differences in caregiver burden scores based on parents' gender, highest education level, number of children, occupation, family history of asthma, monthly family income, annual medical expenses for the child, child's gender, whether the child had undergone lung function tests, number of emergency visits due to asthma exacerbation in the past 3 months, and whether the child had missed school due to asthma exacerbation in the past 3 months (p < 0.1). Detailed results of multivariate analysis showed that parents' gender, occupation, family history of asthma, monthly family income, annual medical expenses for the child, number of emergency visits due to asthma exacerbation in the past 3 months, and whether the child had missed school due to asthma exacerbation in the past 3 months were independent risk factors for caregiver burden in parents of school-age children with asthma (p < 0.05). Parents of school-age children with asthma experience a certain level of caregiver burden, with over one-third of parents experiencing moderate to high levels of burden. Being a mother, being a worker, having no family history of asthma, having low monthly family income, having high annual medical expenses for the child, having frequent emergency visits due to asthma exacerbation in the past 3 months, and having missed school due to asthma exacerbation in the past 3 months are independent risk factors for caregiver burden in parents of school-age children with asthma, healthcare providers should develop feasible coping strategies, such as paying attention to caregivers' psychological condition to reduce the burden of caring for parents of school-age children with asthma. The entire society should also make efforts in improving social support and strengthening healthcare coverage in order to achieve the aforementioned goals.

Usability, Acceptability, and Preliminary Effectiveness of a Peer-Delivered and Technology-Supported Mental Health Intervention for Family Caregivers of People With Dementia: Field Usability Study.

Family caregivers of people with dementia are critical to the quality of life of care recipients and the sustainability of health care systems but face an increased risk of emotional distress and negative physical and mental health outcomes. The purpose of this study was to examine the usability, acceptability, and preliminary effectiveness of a technology-based and caregiver-delivered peer support program, the Caregiver Remote Education and Support (CARES) smartphone or tablet app. A total of 9 adult family caregivers of people with dementia received the CARES intervention, and 3 former family caregivers of people with dementia were trained to deliver it. Quantitative data were collected at baseline and at the end of the 2-week field usability study. Qualitative data were also collected at the end of the 2-week field usability study. The field usability study demonstrated that a 2-week peer-delivered and technology-supported mental health intervention designed to improve burden, stress, and strain levels was experienced by former and current family caregivers of people with dementia as acceptable. Current family caregivers rated CARES as above average in usability, whereas the caregiver peer supporters rated CARES as marginally usable. CARES was associated with non-statistically significant improvements in burden, stress, and strain levels. This field usability study demonstrated that it is possible to train former family caregivers of people with dementia to use technology to deliver a mental health intervention to current family caregivers of people with dementia. Future studies would benefit from a longer trial; a larger sample size; a randomized controlled design; and a control of covariables such as stages of dementia, years providing care, and severity of dementia symptoms.

A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis

BackgroundCurrent and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis.MethodsWe conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis.ResultsBenefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis.ConclusionsIn this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers.

Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma.

Malignant pleural mesothelioma (MPM) is a rare and usually fatal malignancy frequently linked to occupational asbestos exposures and associated with poor prognosis and considerable humanistic burden. The study aimed to develop conceptual models of the health-related quality of life (HRQoL) impact on patients with and receiving treatment for MPM, and the burden on their caregivers. This multi-country study (Australia and United Kingdom) adopted a qualitative methodology to conduct semi-structured, independent interviews with people with MPM (n = 26), current caregivers (n = 20), and caregivers of people who had recently died because of MPM (n = 4). Participants were recruited using a purposive sampling approach and interviews conducted via telephone between January 2021 and January 2022. Transcripts were analysed using thematic analysis and used to construct conceptual models. Patient analysis yielded four overarching themes: (1) debilitating burden of breathlessness and fatigue; (2) physical mesothelioma symptoms experienced by patients; (3) distress of MPM on the self and family; and (4) treatment is worth 'having a go' despite the potential impact on symptoms. Caregiver analysis yielded five core themes: (1) daily life limited by caregiving duties; (2) emotional well-being and the need for support; (3) the relational role shift to caregiver; (4) time spent providing care negatively impacts work and productivity; and (5) positive aspects and outcomes of caregiving. This study highlights the substantial daily and emotional HRQoL impact that MPM symptoms have on patients and caregivers. Both groups reduced work, productivity, and social and leisure activities. There was evidence of positive HRQoL impacts as a result of immunotherapy and radiotherapy, but less for chemotherapy. Caregiver impacts were intensified during the end-of-life period and persisted following patient death. Evident is a need for increased psychological support, information, and advice for caregivers, increased during the end-of-life period.

Home participation and personal and environmental factors in children and adolescents with Down syndrome.

To describe current home participation (frequency, involvement) and caregiver's desire for change in home participation of children and adolescents with Down syndrome, as well as home environmental factors, and to explore the associations of personal and environmental factors with current participation and caregiver's desire for change. Eighty-two caregivers (mean age = 45 years 10 months) of children and adolescents with Down syndrome (mean age = 10 years 7 months) were surveyed about the child's home participation and environmental factors using the Participation and Environment Measure-Children and Youth. Furthermore, children's personal and environmental factors were collected. Results are reported using descriptive analysis and correlations (Spearman's rank correlation coefficients and Mann-Whitney U test) to describe the relationship between current participation and caregiver's desire for change, with personal and environmental factors as ordinal and nominal variables respectively (p < 0.05). Children's participation was highest with regard to personal care management and lowest with regard to school-related activities. Most caregivers desired change in homework and household chores. Greater frequency was associated with male sex, caregiver less rigorous social distancing due to the COVID-19 pandemic, and children receiving therapies. Greater involvement was associated with younger age in children and higher environmental support. Older age in children was associated with caregiver's greater desire for change. Personal and environmental factors correlated with participation in specific ways. Creative strategies to promote participation that consider caregiver's wishes should be undertaken.

What do spouse primary caregivers of patients with glioblastoma want medical providers to know? A qualitative thematic reflexive analysis of letters written by primary caregivers from a secret Facebook support group

ObjectivesTo analyse the content of letters written by female spouse primary caregivers of patients with glioblastoma multiforme (GBM), a devastating and terminal primary brain cancer, and give voice to their...

Caregiver Burden with Duchenne and Becker Muscular Dystrophy in Japan: A Clinical Observation Study.

Objective Skeletal muscle weakness and cardiomyopathy can be seen in carriers of dystrophinopathy. Therefore, the health management of caregivers of Duchenne/Becker muscular dystrophy (DMD/BMD) patients who are themselves carriers is an important issue. However, few studies have focused on caregivers who have dystrophin mutations. Methods In this cross-sectional study conducted at five hospitals, the daily living, situation medical treatment status, genetic testing, physical assessment, care burden, and quality of life of caregivers of DMD/BMD patients were surveyed. Results The subjects were 36 main caregivers (mean age 55.7±8.4 years old), of whom 52.8% were diagnosed as carriers, 8.3% were noncarriers, and 38.9% were not confirmed. In addition, half of the caregivers were not examined regularly at medical institutions. Of all caregivers, 54.3% had muscle or cardiac symptoms, and 75% had elevated serum creatine kinase levels. The mean Zarit Caregiver Burden Interview (ZBI) total score of current caregivers was 20.9±13.1. The frequency of a ZBI total score ≥25 was significantly higher in caregivers diagnosed as carriers than in caregivers unexamined as carriers (p=0.04). The health-related quality of life score (Short Form 36; SF-36) in caregivers was slightly lower than the Japanese standard scores in the sections of physical functioning, role limitations-physical, bodily pain, and social functioning. Conclusion Some caregivers of DMD/BMD patients can themselves have muscular or cardiac symptoms and a heavy care burden. It is therefore necessary for carrier caregivers, especially women, to undergo regular health checkups and receive appropriate health management.

CAREGIVERS &amp; COLONOSCOPIES: A QUANTITATIVE COMPARATIVE STUDY OF CAREGIVERS’ PREVENTATIVE HEALTH BEHAVIORS

Abstract That many caregivers experience some degree of burden is well-established, but little research has investigated the association of burden on caregiver preventative health behaviors. A lack of adherence to these behaviors, including to recommended colonoscopy and mammography screenings, routine vaccinations, annual clinic visits, and HIV testing, may portend worsening health outcomes for family caregivers if diseases are left undetected or untreated; such outcomes could also be caused by and contribute to the crisis of lack of care to meet demand. Survey questionnaires (N=326) were completed by 214 current caregivers and 112 former caregivers from the national MIT AgeLab Caregiver Panel. Respondents predominately identified as white (88%) and female (83%), with a median age of 40-49 years old. Questions assessed caregiving intensity, health status, reported caregiving burden, and adherence to preventative health screenings and vaccinations (per USPTF age- and gender-based recommendations). Among all caregivers, just 17% reported that they were up-to-date with appropriate preventative health screenings. Current caregivers were less likely than previous caregivers to be up-to-date. Controlling for age, income level, and health status, caregiving intensity (as measured by hours per week) was an independent predictor of adherence to preventative health screenings. These findings suggest that current caregivers who are providing high-intensity care are less likely to be engaging in preventative health behaviors for themselves. This finding is concerning for the future health of these caregivers as well as their care recipients and highlights the need for primary care preventative health initiatives specifically targeting family caregivers.

A MIXED METHODS APPROACH TO UNDERSTANDING SPOUSE AND CHILD CAREGIVERS’ EXPERIENCES OF LUCID EPISODES IN DEMENTIA

Abstract Lucid episodes (LE) in people living with late-stages of dementia (PLWD) have been reported anecdotally, but less is known about how this seemingly unexpected phenomenon is experienced by family members. This study aims to examine variability in family caregivers’ experiences with LE, focusing on the two most common groups of informal caregivers, spouses and children—whether they may exhibit differential appraisals of and responses to LEs. Using a sample of former and current family caregivers from UsAgainstAlzheimer’s A-LIST, we conducted an online survey to spouse and child caregivers (N = 387). Qualitative semi-structured interviews were also conducted with a subset of these caregivers who have witnessed an LE (n = 22). Survey results indicate that child caregivers were more likely to witness a LE. Among “former” caregivers who have witnessed a LE (n = 140), spouses were likely to appraise LEs more negatively and make changes in care decisions (i.e., end-of-life planning and financial decisions) after LE, compared to child caregivers. Among “current” caregivers who have witnessed a LE (n = 80), spouses were more likely to indicate no special circumstances prior to LE, whereas children were more likely to indicate LEs associated with visits from friends and family; there was no difference in positive and negative appraisals of LE between current spouse and child caregivers. Content analysis of qualitative interviews revealed that observed differences between spouses and children were related to their different caregiving contexts, such as relationship history, living arrangement, expectations/motivation, and care resources.

PEER SUPPORT FOR CAREGIVERS OF AFRICAN AMERICANS LIVING WITH DEMENTIA: A PHASE 1 BEHAVIORAL INTERVENTION PROTOCOL

Abstract African American caregivers of older adults living with Alzheimer’s disease or a related dementia are at high risk for physical, spiritual, and psychosocial challenges. Peer mentorship, a relationship-centered person-to-person approach may reduce healthcare decision-making burden among African American caregivers through cultural tailoring by promoting oral traditions, personal contact, and storytelling. The purpose of this Stage 1 intervention study is to use a stakeholder-informed approach in further developing and pilot testing the co-created Peer Support for Caregivers of African Americans Living with Alzheimer’s Disease and Related Dementias (Pair2Care), a culturally sensitive caregiver peer support program. Pair2Care feasibility and acceptability will be evaluated in current (n=15) and trained former (n=15) African American Alzheimer’s and related dementia caregivers. Pair2Care will be deemed feasible and acceptable by evaluating eligibility criteria, recruitment and retention data, protocol adherence, satisfaction, and feedback on program appropriateness for broader dissemination. Preliminary intervention outcomes of caregiver anxiety, depression, quality-of-life, social support, self-efficacy for surrogate decision-making, and intent to use palliative care or hospice services will be assessed to evaluate intervention effectiveness. At 6 months as compared to baseline, current caregivers will report less anxiety and depression, improved quality-of-life, social support, and self-efficacy for surrogate decision-making, as well as intent to use palliative care or hospice services as part of healthcare and advance care planning decision- making. Pair2Care poses an innovative strategy with the potential to address advance care planning and healthcare decision-making, a significant health disparity problem and thereby promote health equity.

“CAREGIVING MADE ME GRATEFUL”: THE UNEXPECTED BLESSINGS OF DEMENTIA CAREGIVING

Abstract There is a cultural value among Alaska Natives to care for their Elders and this commitment applies to all Elders, regardless of health status or cognitive health. Caregiver duties can lead to stress, isolation, and depression that negatively impact their overall health and wellbeing. Interviews were conducted with 22 Alaska Native caregivers for Alaska Natives with Alzheimer’s Disease and Related Disorders in rural and urban communities across Alaska. Interviews lasted approximately 60 min and were transcribed verbatim. We examined the caregivers’ experiences of ADRD and the unexpected blessings associated with being a caregiver. Alaska Native caregivers shared the challenges associated with caregiving duties, and the lack of education, awareness, and available resources exacerbated their stress and challenges. As their family member experienced changes related to the ADRD, the blessings took different forms and served different purposes. Spending more time with their family member, remembering family history, engaging in generative behaviors, and strengthening intergenerational relationships were the most frequently discussed blessings. Focusing on these blessings enabled caregivers to continue to find meaning in this role and carry on their cultural values and traditions. This study shifts the focus of caregiving research to highlight the unexpected blessings. The focus on strengths of caregiving and sharing these stories has the potential to provide current and future caregivers to step into this role with a different perspective, or at least not just hear of the challenges and barriers associated with ADRD caregiving.

LONG-TERM CARE CONCERNS AMONG CHILDLESS OR SINGLE CAREGIVERS TO PEOPLE LIVING WITH DEMENTIA

Abstract It is estimated that 77% of people living with dementia receive help with self-care and household activities from informal caregivers (typically family members), meaning there is a significant proportion of the population not receiving informal support. In this qualitative study, we aimed to explore similarities and differences in family caregivers’ concerns about organizing their own care should they develop dementia in the future between those who were childless and/or single and those who had a current partner and children. We interviewed 12 British current and former dementia family caregivers, 5 of whom were childless and/or single, 9 were women and 3 were men, with a mean age of 61. All 5 childless and/or single participants were women. Participants perceived a caregiver as vital for ensuring the person with dementia received the care they needed from services. Caregivers who were childless and/or single expressed concern that by not having someone to be their caregiver should they develop dementia in the future, they would be vulnerable to receiving poor care. In these cases, childless and/or single caregivers described the possibility of exploring options for suicide or euthanasia should they be diagnosed with dementia in the future. Similar sentiments were not expressed by caregivers with current partners and children. While this study uses a small sample size, these findings highlight persons without children and/or a partner have serious concerns about their future care, should they develop dementia. More research is needed to understand how to better support people with dementia without caregivers.

FACTORS ASSOCIATED WITH ELDER MISTREATMENT AMONG PERSONS LIVING WITH DEMENTIA

Abstract Persons living with dementia (PLWD) are at increased risk of experiencing elder mistreatment (EM), including emotional, physical, or sexual abuse, neglect, or financial exploitation. Because PLWD rely on Care Partners (CP) for varying degrees of support with ADLs/IADLs, factors contributing to EM occurrence may be present in the characteristics of the PLWD, CP, and the environment in which they interact. The present study sought to identify associated risk and protective factors of EM in PLWD-CP care groups. As part of a longitudinal study, survey administration interviews were conducted with 163 care groups consisting of a PLWD and their CP(s) (n=184) to gather data on participant characteristics, current and past relationship quality, current caregiving interactions, and EM occurrence. This analysis used baseline data with responses weighted to control for participation of multiple CPs. Bivariate logistic regression was used to model the likelihood of the PLWD experiencing EM. Nearly a quarter of PLWDs (23.9%; n=39) experienced EM, with emotional abuse (19.0%), neglect (7.4%), and financial exploitation (4.3%) occurring most frequently. Preliminary analyses reveal significant bivariate associations between EM and PLWD alcohol/substance abuse (OR=3.244;CI=1.020-10.320) and educational attainment (OR=1.495;CI=1.077-2.075), and CP symptoms of depression (OR=1.170;CI=1.046-1.308) or anxiety (OR=1.194;CI=1.085-1.315), high caregiving burden (OR=1.099;CI=1.042-1.159), expectations of themselves (OR=1.747;CI=1.064-2.867) and the PLWD (OR=1.730;CI=1.113-2.688), and alcohol/substance abuse (OR=2.163;CI=1.080-4.333). These associations provide a foundation for further evaluation of these characteristics as potential longitudinal risk factors for EM, and provide potential targets for the development of prevention and intervention strategies that are tailored to care groups’ characteristics and needs.

RESILIENCE AMONG BLACK FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract Black family caregivers of persons with dementia often experience elevated levels of stress related to lower incomes, chronic health conditions, and care recipient behaviors. Resilience theory suggests that stress may be moderated by various resources and processes, however, few studies have examined factors that may influence emotional resilience among Black family caregivers. Spearman’s rank correlation coefficient was used to assess the relationships between adaptive coping, caregiving self-efficacy, and positive affect within a sample of current caregivers (n=20). Self-efficacy in obtaining respite care was significantly correlated with both positive affect (p=.041) and adaptive coping (p=.022). Self-efficacy for managing difficult behaviors was also correlated with positive affect (p=.001). Finally, we identified a significant correlation between body mass index and self-efficacy for controlling upsetting thoughts. Caregiver resilience may be enhanced by providing increased access to respite services and culturally responsive support programs aimed at enhancing positive emotions and affective balance.