Effectiveness of Powerful Tools for Caregivers on Caregiver Burden and on Care Recipient Behavioral and Psychological Symptoms of Dementia: A Randomized Controlled Trial

ObjectiveThe aim of this study was to evaluate the effectiveness of a psychoeducational intervention, Powerful Tools for Caregivers (PTC), for family caregivers of individuals with dementia.DesignA pragmatic, 2-arm randomized controlled trial compared the PTC intervention, as delivered in practice, to usual care. Participants randomized to usual care functioned as a control group and then received the PTC intervention.InterventionPTC is a 6-week manualized program that includes weekly 2-hour classes in a group setting facilitated by 2 trained and certified leaders. The educational program helps caregivers to enhance self-care practices and manage emotional distress.Setting and participantsTwo stakeholder organizations delivered the intervention in community settings. Participants were family caregivers of individuals with dementia recruited from the community in Florida.MethodsPrimary outcomes were caregiver burden and behavioral and psychological symptoms of dementia of the care recipient. Secondary outcomes included caregiver depressive symptoms, self-efficacy, self-rated health, and life satisfaction. Measures were collected at baseline (n = 60 participants), postintervention (n = 55), and at 6-week follow-up (n = 44).ResultsIntent-to-treat analyses found PTC reduced caregiver burden (d = −0.48) and depressive symptoms (d = −0.53), and increased self-confidence (d = 0.68), but found no significant benefit for behavioral and psychological symptoms of dementia in care recipients. PTC was rated highly by participants and program attrition was low, with 94% of caregivers completing at least 4 of the 6 classes.Conclusions and implicationsAlthough no significant effects were found for behavioral and psychological symptoms of dementia, this trial supports the effectiveness of PTC to improve caregiver outcomes as delivered in the community.     

Caregiving Experiences and Health Conditions of Women Veteran and Non-Veteran Caregivers

BackgroundUnique experiences, for example, trauma, of women veteran caregivers may create differences in the caregiving experience and may be associated with health concerns. We examined caregiving factors and health concerns in women veteran caregivers compared to non-veteran women (civilian) caregivers, and identified variables associated with being a woman veteran caregiver.MethodsWe conducted secondary data analyses using data from a multistate survey to examine sociodemographics, the caregiver experience (relationship to recipient, duration as caregiver, hours of care provided, area help is needed, and greatest difficulty faced as a caregiver); emotional support; life satisfaction; lifestyle behaviors; general, physical, and mental health; and chronic conditions in women informal caregivers.FindingsOf women caregivers, more veteran caregivers provided activities of daily living (ADL) help (33%) than non-veteran caregivers (21%; p = .02). There were no differences in years as a caregiver, hours of care provided, or the relationship to the recipient. Poor sleep and poor mental health were experienced by more women veteran caregivers (vs. non-veteran), but physical health, general health, and chronic condition prevalence did not differ. Women veteran caregivers had twofold greater odds of being Black, never married, college educated, and providing ADL assistance. Odds of obesity were lower for women veteran caregivers relative to other women caregivers.ConclusionsWomen veteran caregivers experience health concerns, including sleeplessness, poor mental health, and some chronic conditions. Our cohort were young women, yet had concerns that may be exacerbated by being a veteran and assuming a caregiver role. Comprehensive services to support their needs as veteran patients and as caregivers are needed.     

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs

BackgroundTelehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers.ObjectiveWhat factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services?MethodsRetrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status.ResultsAge (ages 23–30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23–30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access.ConclusionsDisparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.     

Stroke Rehabilitation Use and Caregiver Psychosocial Health Profiles in Singapore: A Latent Profile Transition Analysis

ObjectivesTo identify and describe caregiver profiles based on their psychosocial health characteristics over a 12-month period and transitions among these profiles, to determine if stroke rehabilitation use at 12 months post-stroke differed by caregiver profile transition patterns, and to investigate if caregiver profiles at 3 months post-stroke moderate the association of stroke rehabilitation use at 3 months and 12 months post-stroke after accounting for covariates.DesignLatent profile transition analysis of caregiver psychosocial health with stroke rehabilitation use at 12 month post-stroke as outcome.Setting and ParticipantsA total of 149 stroke patient-caregiver dyads from the Singapore Stroke Study.MethodsCross-sectional latent profile analyses were conducted on caregiver psychosocial health indicators of burden, depression, health status, quality of relationship with patient, and social support. Changes in latent profile classification over 3 time points (baseline, 3 months, and 12 months post-stroke) were analyzed using latent transition analysis. A transition model with stroke rehabilitation use at 12 months post-stroke as the outcome was tested after accounting for covariates.ResultsTwo distinct caregiver psychosocial health latent profiles were found across time: nondistressed and distressed. Most caregivers were classified as nondistressed and remained nondistressed over time. Distressed caregivers at baseline were 76% likely to become nondistressed at 12 month post-stroke. Regardless of profile transition patterns, nondistressed caregivers at 12 months post-stroke tended to have cared for stroke rehabilitation nonusers at 12 months post-stroke. Patient depression explained profile classification at 3 months and 12 months post-stroke. After accounting for covariates, rehabilitation users at 3 months post-stroke tended to continue using rehabilitation at 12 months post-stroke only when they had nondistressed caregivers at 3 months post-stroke.Conclusions and ImplicationsWhether caregiver adaptation explains the associations between the latent profile transition patterns and rehabilitation use at 12 months post-stroke should be examined. Early psychosocial health assessment and sustained support should be made available to stroke caregivers to enhance their well-being and subsequent patient rehabilitation participation.     

Training Needs Among Family Caregivers Assisting During Home Health,as Identified by Home Health Clinicians

ObjectivesTo estimate the proportion of family caregivers assisting older adults during Medicare home health who have an identified need for activity-specific training and identify characteristics associated with caregiver training needs.DesignNationally representative retrospective cohort study.Setting and Participants1758 (weighted n = 8,477,990) Medicare beneficiaries who participated in the National Health and Aging Trends Study (NHATS) and received Medicare-funded home health care between 2011 and 2016.MeasuresOlder adult and caregiving network characteristics before home health (sociodemographic factors, caregiver assistance, older adult health and function) were drawn from NHATS; characteristics during home health (family caregiver training needs, older adult health and function) were drawn from home health patient assessments. Weighted proportions of family caregivers with an identified need for activity-specific training were estimated. Weighted, multivariable logistic regressions modeled associations between older adult/caregiving network characteristics and family caregivers’ identified activity-specific training needs during home health.ResultsMore than 1 in 3 (35.7%) family caregivers assisting older adults during Medicare home health had an identified training need with at least 1 caregiving activity. Rates of need for training varied widely, from 8.6% among caregivers helping with advocacy to 48.2% among caregivers helping with medical procedures. In weighted analyses that adjusted for older adults’ health and function, family caregivers were less likely to have identified training needs when assisting older adults with ongoing disability or who received caregiver assistance before home health admission.Conclusions and ImplicationsFindings highlight the pervasiveness of family caregivers' training needs, particularly with medically oriented activities, and indicate that escalations in older adults’ care needs are linked to caregiver training needs. Therefore, transitions of care may present critical opportunities to connect family caregivers with training resources.     

The Role of Attitudes and Culture in Family Caregiving for Older Adults

This study evaluated cultural differences in attitudes toward caregiving and the stress levels of family caregivers. Participants included 98 Japanese American and 86 Caucasian American family caregivers caring for frail elders. Analyses using MANOVA and multiple regression analyses revealed that the Caucasian caregivers had more positive attitudes and provided more hours of care than the Japanese caregivers but that both groups had elevated levels of caregiver stress. The stress that family caregivers currently experience could lead to a future generation of care recipients who enter old age in worse condition than their predecessors. Professionals need to work together to develop culturally appropriate, evidence-based interventions to address this issue.     

Codesigning person‐centred quality indicators with diverse communities: A qualitative patient engagement study

IntroductionEffective engagement of underrepresented communities in health research and policy remains a challenge due to barriers that hinder participation. Our study had two objectives: (1) identify themes of person‐centred care (PCC) from perspectives of diverse patients/caregivers that would inform the development of person‐centred quality indicators (PC‐QIs) for evaluating the quality of PCC and initiatives to improve PCC and (2) explore innovative participatory approaches to engage ethnocultural communities in qualitative research.MethodsDrawing on participatory action research methods, we partnered with a community‐based organization to train six ‘Community Brokers’ from the Chinese, Filipino, South Asian, Latino‐Hispanic, East African and Syrian communities, who were engaged throughout the study. We also partnered with the provincial health organization to engage their Patient and Family Advisory, who represented further aspects of diversity. We conducted focus group discussions with patients/caregivers to obtain their perspectives on their values, preferences and needs regarding PCC. We identified themes through our study and engaged provincial stakeholders to prioritize these themes for informing the development of PC‐QIs and codesign initiatives for improving PCC.ResultsEight focus groups were conducted with 66 diverse participants. Ethnocultural communities highlighted themes related to access and cost of care, language barriers and culture, while the Patient and Family Advisory emphasized patient and caregiver engagement. Together with provincial stakeholders, initiatives were identified to improve PCC, such as codesigning innovative models of training and evaluation of healthcare providers.ConclusionIncorporating patient and community voices requires addressing issues related to equity and understanding barriers to effective and meaningful engagement.Patient or Public ContributionPatient and public engagement was central to our research study. This included partnership with a community‐based organization, with a broad network of ethnocultural communities, as well as the provincial health service delivery organization, who both facilitated the ongoing engagement of diverse patients/caregiver communities throughout our study including designing the study, recruiting participants, collecting and organizing data, interpreting findings and mobilizing knowledge. Drawing from participatory action research methods, patients and the public were involved in the codesign of the PC‐QIs and initiatives to improve PCC in the province based on the findings from our study.     

Receipt of mammography among women with intellectual disabilities: Medical record data indicate substantial disparities for African American women

BackgroundLittle information exists on the receipt of mammography by African American women with intellectual disabilities. Given the high rates of mortality from breast cancer among African American women and low screening rates among women with intellectual disabilities, it is important to understand the health screening behavior of this population.ObjectiveWe compared rates of mammography receipt among African American and White women with intellectual disabilities (n = 92) living in community settings in one Southeastern state in the United States.MethodData were collected from women's medical records or abstraction forms obtained from medical practices. Multivariate logistic regressions were modeled for receipt of mammography in one year, one of two years, or both study years (2008– 2009). Covariates included the women's age, living arrangement, severity of impairment, and urban/rural residence location.ResultsIn 2009, 29% of African American women and 59% of White women in the sample received mammograms. Similar disparities were found for receipt of mammography in either 2008 or 2009 and both 2008 and 2009. These disparities persisted after inclusion of model covariates. White women with intellectual disabilities received mammograms at adjusted rates that were nearly three to five times higher than African American women.ConclusionAfrican American women with intellectual disabilities receive mammography at significantly lower rates than White women with intellectual disabilities. Assertive measures to improve the screening rates for African American women with intellectual disabilities are urgently needed.     

Presentation of caregiver-specific vaccine-related information on National Cancer Institute designated cancer center websites

BackgroundHousehold-based caregivers serve an important role in protecting the health of cancer patients, who may be vulnerable to infectious diseases due to their cancer treatments. Caregiver preventive care should be prioritized to maintain continuity of care and to reduce potential for transmission of infectious diseases to cancer patients. Uptake of vaccines, such as influenza vaccine, is suboptimal in the United States in general, as well as among caregivers for cancer patients. Little is known about the types of information about vaccination and prevention of infectious diseases (e.g. influenza) presented to caregivers of cancer patients.MethodsA qualitative content review of NCI cancer center websites (N = 70), searching for vaccine-related information and the need for and availability of vaccines for caregivers, and comparison of the availability of this information to that for caregiver support groups and general preventative health information (e.g. diet, exercise) for caregivers or patients was conducted.ResultsWhile 53 of 70 (76%) cancer centers routinely presented general preventative health information for caregivers or patients, only eight (11%) cancer centers had any information about vaccinations for caregivers or patients. Of these eight cancer center websites, only one had information about vaccinations for caregivers or family contacts.ConclusionsAs vaccinations confer both individual and community-level protection against infectious diseases, promotion of routine vaccination for caregivers should be considered as part of caregiver support resources provided by cancer centers. This can include changes such as including this information on cancer center websites or adding to caregiver support resource documents.     

Factors Associated With Family Caregiver Burden of Home-Dwelling Patients With Advanced Dementia

ObjectivesTo realize patients’ preferences for home death, this study aimed to identify factors associated with family caregiver burden of home-dwelling patients with advanced dementia and examine its relationship with end-of-life care treatment decisions.DesignA prospective cohort study.Setting and ParticipantsPatient-family caregiver dyads enrolled in a home-based palliative care program for patients with advanced dementia, with family caregiver burden assessed using the Zarit Burden Interview (ZBI) on enrolment, were included.MethodsIndependent variables included sociodemographic data, patients’ clinical phase, symptom severity, quality of life, informal paid help availability, and community resources utilized. Dependent variable was continuous ZBI scores and ZBI scores dichotomized into <24 and ≥24 for predicting depression risk. Place of death and interventions received 2 weeks before death were also collected. Data were analyzed using multivariate linear and logistic regression.ResultsFrom October 2014 to December 2020, a total of 377 family caregivers were assessed with ZBI. Median score was 25 (IQR 15-36), and 54.4% of them were at risk of depression. Younger family caregivers had higher ZBI scores (β = ?0.22, 95% CI –0.38, ?0.07), with the depression risk doubling for family caregivers aged <60 years (OR 2.13, 95% CI 1.33, 3.43). Absence of informal paid help also increased the ZBI scores (β = ?9.04, 95% CI –14.86, ?3.22) and depression risk (OR 2.50, 95% CI 1.03, 6.09). In addition, caregivers’ ZBI scores increased with patients’ neuropsychiatric symptom severity (β = 0.49, 95% CI 0.08, 0.89), and caregivers of clinically unstable patients had a higher depression risk (OR 1.80, 95% CI 1.03, 3.12). Baseline caregiver burden was not associated with treatment decisions made at the end of life.Conclusions and ImplicationsYounger family caregivers caring for clinically unstable patients with severe neuropsychiatric symptoms experienced greater burden without informal paid help. For end-of-life care at home in advanced dementia to be tenable, relevant national agencies and stakeholders are recommended to work collectively to support family caregivers holistically.     

Informal caregivers of people with an intellectual disability in England: health,quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well‐being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population‐representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability. Informal carers of people with intellectual disability (N = 260) were identified among 2199 carers in the English Survey of Carers in Households 2009/10. Generalised estimating equations explored the association between socio‐demographic and caring profile with quality of life, physical health status, and impact on psychological health and personal life. Compared to other caregivers, providing care to a person with intellectual disability was not associated with reduced quality of life. There was an 82% increased risk of reporting poorer health status, even though poorer health was not likely to be attributed to care‐giving. A higher risk of negative impact on personal life was seen in comparison with the wider group of caregivers, but not in comparison with more similar‐sized caregiver groups (mental health or dementia). Carers of people with intellectual disability were more likely to be struggling financially and have a high caring load. These factors were systematically related to lower well‐being. A uniformly negative appraisal of caring for people with intellectual disability was not supported by these English population‐representative data. Poverty and long care‐giving hours may make caregivers more susceptible to negative well‐being. Support for caregivers of people with intellectual disability should focus on alleviating those two factors.     

Effects of a Caregiver Training Program on Oral Hygiene of Alzheimer's Patients in Institutional Care

ObjectivesTo investigate the effects of a caregiver training program on the oral hygiene of caregivers and patients with Alzheimer's disease (AD) and to identify program components and parameters for accurate assessment of outcomes.DesignSingle-blinded prospective cohort study.Setting and participantsPatients with AD and caregivers in nursing homes in the Greater Zhengzhou Area, China.MethodsInitially 168 AD patient/caregiver pairs were recruited and randomly assigned to control, limited training, and comprehensive training groups. The mini-mental state examination, global deterioration scale, and Katz activities of daily living scale were conducted for patients with AD. Information on participants’ oral hygiene habits and general oral health was collected. The modified Quigley-Hein Plaque Index (PI) and Gingival Index (GI) were used to assess oral hygiene and gingival health. Intervention included (1) an educational video showing the role of dental plaque and the modified Bass technique; and (2) caregivers practicing toothbrushing on themselves and patients with AD under professional guidance. Changes in oral hygiene and correlations between patient PI/GI and caregiver PI/GI were analyzed.ResultsAfter 6 weeks, complete data for 146 AD patient/caregiver pairs were collected. Before enrollment, most patients with AD had very poor oral hygiene. Compared with controls and limited training, only comprehensive training was able to achieve steady reduction in PI and GI scores in patients with AD, which still fell short of desirable levels (PI: 2.46 ± 0.52, GI: 1.24 ± 0.24, week 6). PI and GI scores in caregivers saw steady improvement only through comprehensive training (PI: 1.41 ± 0.38, GI: 0.88 ± 0.19, week 6). Number of training sessions had the greatest influence on both patient PI and GI scores.Conclusions and implicationsComprehensive caregiver training on toothbrushing skills is effective in improving the oral hygiene of caregivers and patients with AD in nursing homes. Additional evidence is needed to establish the optimal program structure.     

Sexual and behavioral health disparities among African American sexual minority men and women

ABSTRACT

Introduction: Sexual and behavioral health disparities have been consistently demonstrated between African American and White adults and between sexual minority and heterosexual communities in the United States; however, few studies using nationally representative samples have examined disparities between sexual minority and heterosexual adults within African American populations. The purpose of this study was to examine the prevalence of sexual and behavioral health outcomes between sexual minority and heterosexual African American adults and to examine whether there were different patterns of disparities for African American sexual minority men and women, respectively.

Methods: We analyzed data from 4502 African American adults who participated in the 2001–2015 waves of the National Health and Nutrition Examination Survey. Using multivariable analyses, we examined differences in HIV, sexually transmitted infections, mental health, and substance use among African American sexual minority and heterosexual men and women.

Results: After adjusting for sociodemographic variables, African American sexual minority men had significantly higher odds of HIV, sexually transmitted infections, and poor mental health compared to their heterosexual male counterparts, whereas African American sexual minority women had significantly higher odds of Hepatitis C, poor mental health, and substance use compared to their heterosexual female counterparts.

Conclusions: These findings demonstrate notable sexual orientation disparities among African American adults. Disparities persisted beyond the role of sociodemographic factors, suggesting that further research utilizing an intersectional approach is warranted to understand the social determinants of adverse health outcomes among African American sexual minority men and women.     

Social Networks Effects on Spouse and Adult-Child Dementia Caregivers’ Experiences: A Cross-Sectional Study

ObjectivesA large body of literature addresses experiences of spouse and adult-children caregiver of individuals with dementia (IWDs) but has not examined the role and strength of social networks in associations between spouses and adult-children caregivers’ experience. Based on the stress process model, we aimed to explore the strength levels of social networks and their association with spouses/adult-children caregivers for IWDs.DesignA cross-sectional study.Setting and ParticipantsA questionnaire-based survey was conducted with a total of 146 family caregivers of IWDs (78 adult-child, and 68 spouses) in China.MethodsData collection comprised 4 sections: (1) care-related stressors (dementia stage, neuropsychiatric symptoms); (2) caregiver context; (3) social network, using the Lubben Social Network Scale; and (4) caregiving experience, using the short-form Zarit Burden Interview and 9-item Positive Aspects of Caregiving Scale. Linear regression, mediation model analysis, and interactive analysis were performed to explore the mechanisms of associations between variables.ResultsSpouses had weaker social network strength (β = −0.294, P = .001) and reported greater positive aspects of caregiving (β = 0.234, P = .003) than adult-children caregivers; no significant difference was found between them for caregiver burden. Mediation analysis suggests that associations between caregiver type and caregiver burden are indirect-only mediation effects of social networks (β = 0.140, 95% CI = 0.066-0.228). The social network strength suppressed the association between caregiver type and positive aspects of caregiving. The caregiver type/social network interaction statistically significantly (P = .025) affected the “positive aspects”: a stronger social network was associated with more positive aspects of caregiving among the spouse subgroup (β = 0.341, P = .003).Conclusions and ImplicationsSocial networks mediate responses to caregiving experiences among different care provider types and are vital intervention targets, especially for spousal caregivers. Our results can serve as references for identifying caregivers for clinical intervention.     

Internalizing symptoms mediate the relationship between sleep disordered breathing and pain symptoms in a pediatric hematology/oncology sample

Objective: To examine caregiver ratings of children’s internalizing symptoms as a potential mediator between sleep disordered breathing and pain symptoms. Caregiver depression/anxiety symptoms were further examined as a potential moderator of the mediation model. Methods: Participants were 96 caregivers (82% mothers) of children with cancer, sickle cell disease, or other hematological conditions (M age = 10.45 years; 46.9% female, 78.1% African American). Caregivers completed questionnaires on child patient symptoms during regular clinic visits. Results: As hypothesized, the effect of sleep on pain (β = 0.31) was reduced (β = 0.15) after accounting for child internalizing symptoms (β = 0.17, 95% confidence interval = 0.03 to 0.42). The indirect effect accounted for 54.8% of the total effect. However, caregiver depression/anxiety symptoms were not a significant moderator of this mediation model. Conclusions: Sleep may play an important role in the experience of pain in children with hematology/oncology conditions. A child’s mood may mediate this relationship.