Care Recipient Characteristics Research Articles

Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities

This study aimed to systematically review and analyze factors contributing to caregiver burden among family caregivers of older adults with chronic illnesses in local communities. Specific objectives included exploring the characteristics of older adults with chronic illness and caregiver burden through an extensive literature review and identifying factors influencing caregiver burden in this population. Using Korean (RISS, KISS, and KoreaMed) and international (EMBASE, MEDLINE, CINAHL, and the Cochrane Library) databases, this study employed systematic search methods to identify relevant literature. The inclusion and exclusion criteria were systematically applied in accordance with the PRISMA guidelines, focusing on studies that addressed caregiver burden among family caregivers of older adults with chronic illnesses in local communities. Following the database search, 15,962 articles were identified. After eliminating duplicates and applying the selection criteria, 18 studies were included in this review. These studies, representing various countries, contribute to a diverse dataset covering caregiver and care-recipient characteristics, including age, sex, chronic conditions, and various caregiver burden assessment tools. This systematic review provides a comprehensive understanding of the factors that influence caregiver burden among family caregivers of older adults with chronic illness in local communities. These findings emphasize the need for integrated nursing interventions and community efforts to address the welfare concerns of this population and support their caregivers.

Working conditions, missed care and patient experience in home care nursing in Italy: An observational study.

The aging of the population requires an appropriate knowledge of the type of care that needs to be provided to inform healthcare policies. In Italy, neither home care nursing, nor the patient experiences have ever been described. To describe the characteristics of nurses and care recipients involved in home care. A descriptive cross-sectional study conducted in 18 Italian Regions. Between April and October 2023, data from nurses and patients involved in home care were collected through two surveys. Psychosocial conditions in workplaces, missed care, and care experiences were assessed using validated tools. Descriptive statistics and Pearson's correlations were performed. A total of 46 local healthcare units were included in this study, with a total of 2549 nurses and 4709 care recipients. Nurses (mean age 46.60; 79.48% female; 44.68% regional nursing diploma as the highest qualification) reported good working conditions (42.37; SD=12.25; range=0-100) and a high mean number of missed care activities (5.11; SD=3.19; range 0-9). Most nurses (83.41%) reported high levels of job satisfaction, while 20.28% intended to leave their job. Patients (mean age 75.18; 57.57% female; 36.95% primary school), on the other hand, rated positively the care they had received (8.23; range=0-10). Despite the perception of critical issues at work and some missed care, satisfaction in nurses and patients was high. These data constitute a preliminary snapshot of the studied phenomena, which will be investigated through more in-depth analyses.

[Need for Care in Old Age: Characterization of Informal Caregivers and the Care Situation with Regard to Care Levels in Home Care].

In Germany, people in need of care can be supported by benefits from care insurance. Prerequisite is an official assessment of the need for care, which is carried out by assigning care levels (1 to 5) according to the Second Care Strengthening Act. One of the reasons for introducing care levels was to pay more attention to the needs of people with dementia. In this article, characterization of care levels were based on characteristics of care recipients, their relatives, and the care situation. The aim was to map the current state of health care and providing practical suggestions to improve health care. Data was collected as part of the cross-sectional study "Benefits of being a caregiver" by a written survey of informal caregivers throughout Bavaria on aspects of the caregiving situation as well as on current and desired future use of 15 care services. To compare care levels, group differences were analyzed using χ2-tests and one-factor analysis of variance. The effect size measures odds ratio and Cohen's d were reported for significant group differences comparing care levels 1 and 4. The sample consisted of 958 cases of people in need of care aged 65 and above. The proportion of people with dementia increased significantly with care level. For informal caregivers, subjective burden, functional coping strategies, and the caregiving motive of not wanting to place the care recipient in a nursing home increased with care level. Informal caregivers of those with higher care levels spent significantly more time on supporting activities of daily living and supervision; they received more informal help, and more often lived together with the care recipient in a household. For 9 of the 15 care services surveyed (e. g. 24-h care), current use increased significantly with increasing care level. However, we recorded a low overall utilization rate of care services across all care levels (M=2.20; SD=1.90). As a result of the Second Care Strengthening Act, people with dementia get good access to care insurance benefits. The increasing amount of time required for assisting in activities of daily living and supervision is reflected by care levels. Despite the increasing caregiving burden, care services are rarely used. Therefore, we recommend that measures to increase the use of support and counselling services be expanded.

[Adult Day Care Service: Who Uses it and Who Wants to Use it? Multivariable Analysis of Current and Future Use of Adult Day Care Service by Elderly Persons in Long-Term Care].

Background Adult day care serves to ease the burden on informal caregivers and to provide adequate care and support for care recipients. Across Bavaria and Germany, adult day care is attended by 4% of all care recipients. The aim of the secondary analysis was to identify variables linked to the current or desired future use of adult day care services. Methodology For the cross-sectional study Benefits of Being a Caregiver ("Zugewinne durch die Pflege"), informal caregivers of geriatric care receiver were surveyed in Bavaria from October 2019 to March 2020 (age>65; n=958). Data regarding caregiving situation, characteristics of informal caregivers and care recipients, and sociodemographic information were collected. Two binary logistic regression analyses were conducted to identify predictors of current or desired adult day care service use. Results Adult day care was used by 7.3% (n=70) of informal caregivers. Utilization was associated with dementia and high care degree requirements of the care recipient(Nagelkerke's R2 = 0.200). Of the 888 informal caregivers not using adult day care services, 223 (25.1%) expressed a desire to use them. This was associated with care recipients suffering from dementia, a poor previous relationship, and a high subjective burden on the informal caregiver (Nagelkerke's R²=0.083). Conclusion The utilization rate of adult day care was found to be higher than reported in Bavarian or German care statistics. Dementia and an increased need for care of the care recipient were associated with utilization, but contrary to reports in literature, no association with everyday limitations, sex, education, or duration of care was found. More than two-thirds of Bavarian informal caregivers do not want to use adult day care services either now or in the future.

SPOUSAL CAREGIVING AND PARALLEL COGNITIVE TRAJECTORIES AMONG OLDER ADULT CAREGIVERS AND RECIPIENTS IN CHINA

Abstract Prior studies have paid much attention to the physical and mental health outcomes of spouse caregivers. However, few have looked at the cognitive trajectory of caregivers and how it was associated with the characteristics of caregivers and care recipients. Based on four waves (2011, 2013, 2015, and 2018) of the Chinese Health and Retirement Longitudinal Survey (CHARLS) (N=3137 dyad couples aged 45 and above), cognitive function was measured by Mini-Mental State Examination (MMSE). A parallel process growth model was conducted to explore the association between spouse caregiving and the joint trajectories of caregivers and their recipients’ cognitive decline during the eight years. Preliminary results show that 1) couples’ trajectories are significantly related to each other, although men had a higher initial level of cognitive function than women, their cognitive function declined at a faster rate than women did; 2) The relationship between caregiving and cognitive trajectory varies by gender. Specifically, providing care is positively correlated with slower cognitive decline in men, but not in women. Whereas receiving the care was associated with a faster cognitive decline for both gender. These findings emphasize the need of paying attention to both family caregivers and recipients and the need for more targeted intervention strategies based on the nature of care.

Differences in Dementia Caregiver Distress Based on Caregiver Gender and Care Recipient Neuropsychiatric Symptoms

AbstractBackgroundOur healthcare system relies on unpaid family caregivers (e.g., spouses) for care of individuals with Alzheimer’s disease and related dementias (ADRD). Several caregiver and care recipient characteristics are known to be associated with caregiver burden and psychological outcomes in dementia caregivers. Research suggests that caregiver emotional distress is higher among women versus men, and that it increases with elevated care recipient neuropsychiatric symptoms (NPS). However, it is unclear whether gender differences in caregiver distress are independent of care recipient characteristics.MethodCaregivers completed the Neuropsychiatric Inventory‐ Questionnaire (NPI‐Q). Presence of NPS in care recipients was summed across 12 NPI‐Q domains. Using one‐way analyses of covariance (ANCOVAs), we assessed how caregiver gender (woman/man) and care recipient NPS are associated with caregiver burden (Zarit Burden Interview), anxiety (Geriatric Anxiety Index), quality of life (WHO‐5 Well‐Being Index), preparedness for caregiving (Preparedness for Caregiving Scale), and self‐efficacy (General Self‐Efficacy Scale) in a sample of 112 unpaid family caregivers. Covariates included caregiver age and co‐living status. Bonferroni corrections were used to adjust for multiple comparisons. The sample was comprised of 73.2% women with a mean age of 64.6 ± 12.2 years. Caregivers were primarily spouses (68.5%) and daughters (20.7%) of care recipients.ResultRelative to men caregivers, women caregivers reported higher levels of burden (F(1,103) = 24.4, p<.005) and anxiety (F(1,103) = 8.60, p<.005) and lower quality of life (F(1,103) = 9.85, p <.005). Caregivers who rated their care recipients as having more NPS also reported greater burden (F(1,103) = 27.2, p<.005), higher anxiety (F(1,103) = 26.0, p<.005), and lower quality of life (F(1,103) = 34.9, p <.005). There were no significant interactions between gender and NPS. Gender and presence of NPS were not associated with caregivers’ preparedness for caregiving or general self‐efficacy.ConclusionWhile women and men caregivers in this sample reported similar levels of preparedness and self‐efficacy, women endorsed greater levels of emotional distress in the form of caregiver burden, anxiety, and decreased quality of life. Across caregiver gender, age, and co‐living status, NPS in care recipients predicted poor psychosocial outcomes in our sample. Our data suggest the need for interventions to support women caregivers, and mitigate the burden associated with neuropsychiatric disturbances.

Perceptions about Dementia Clinical Trials

AbstractBackgroundThe research community has historically failed to enroll diverse populations in dementia clinical trials. A unique aspect of dementia care research is the requirement of a study partner, who can attest to the care recipient’s clinical and functional capacity. The aim of this study is to assess racial and ethnic differences and the importance of various trial considerations, among dementia caregivers, in their decision to participate in clinical research as study partners.MethodWe embedded a vignette about a hypothetical dementia clinical trial in a nationally representative survey of dementia caregivers, oversampling Black non‐Hispanic and Hispanic caregivers. They were asked about their willingness to participate in the trial with their care recipient, and rated the importance of nine considerations in hypothetical decisions to participate. Caregiver demographic characteristics, care recipient characteristics, and relational characteristics were analyzed as predictors of trial participation in a demographic model. In a second model, caregiver demographic characteristics and the rated importance of the nine considerations were separately analyzed as predictors; both models used survey‐weighted logistic regression.ResultThe sample consisted of 610 caregivers, including 156 Black non‐Hispanic and 122 Hispanic participants. In the demographic model, hypothetical trial participation was negatively associated with caregiver age [OR (odds ratio) = 0.46, P = <0.001], and with care recipient male gender [OR = 0.34, P = 0.007]. In the second model, responsibility to help others by participating in research was significantly associated with participation [OR = 1.56, P = 0.049], while the possibility of the care recipient experiencing serious side effects was negatively associated with participation [OR = 0.51, P = 0.003]. In both models there was no significant difference in hypothetical participation between non‐Hispanic Black and non‐Hispanic White caregivers, or between Hispanic and non‐Hispanic White caregivers.ConclusionHispanic and non‐Hispanic Black dementia caregivers were not less likely than non‐Hispanic White dementia caregivers to participate in a hypothetical dementia clinical trial. Our study suggests that failures to recruit diverse populations in dementia clinical research are not attributable to less willingness among members of underrepresented groups, but may instead reflect structural barriers and historic exclusion from trial participation.

Impact of a COVID-19-Related Lockdown on the Experience of Informal Caregiving in Singapore

Introduction: Lockdowns, while limiting COVID-19 transmission, can affect provision of care by informal caregivers and their caregiving experience. We assessed, among informal caregivers in Singapore, (a) the perceived impact of a 2-month (April to May 2020) nationwide lockdown on their care provision, (b) correlates of different perceptions of the impact of the lockdown on care provision, and (c) association of different perceptions of the impact with negative and positive experiences of caregiving. Methods: In the August 2020 wave of the Singapore Life Panel (SLP; nationally representative, longitudinal monthly survey of Singapore citizens and permanent residents aged 50–70 years at baseline), 1,094 participants identified as informal caregivers reported whether their care provision became easier, remained the same, or became harder during the lockdown, compared to before the lockdown. We used multinomial logistic regression to assess the association of caregiver, care recipient, and caregiving context characteristics with their perceptions. Linear regression models examined the association of their perceptions with negative and positive experience domains of the modified Caregiver Reaction Assessment. Results: Just over one-third (36.1%) of the informal caregivers reported that their care provision became harder during the lockdown compared to before the lockdown. However, nearly one-fifth (18.0%) said that it became easier, and the rest (45.9%) said that it remained the same. Care provision was more likely to be perceived as having become harder among caregivers who were male, of Chinese ethnicity, in worse health, whose care recipients had functional limitations, who did not have caregiving support from cohabiting family members before the lockdown, and who had caregiving support from non-cohabiting family members before the lockdown. The perception that care provision became easier was less likely among caregivers who were of higher age, were unemployed, were socially isolated, and whose care recipients had functional limitations. Caregivers who perceived that care provision became harder during the lockdown were worse-off in negative experiences of caregiving. Conclusion: A nationwide lockdown did not make care provision harder for all informal caregivers. However, informal caregivers for whom it did were more likely to have greater negative experiences of caregiving. The heterogeneity of the impact of lockdowns and the possibility of offering flexibility to non-cohabiting family members who support caregiving should be important considerations when planning for such disruptions.

Prevalence Estimates of Arthritis and Activity-Limiting Pain Among Family Caregivers to Older Adults.

Little is known about the prevalence of physical pain among family caregivers to older adults. We used national survey data to assess the relative prevalence of caregivers' arthritis and activity-limiting bothersome pain by caregiver and care recipient characteristics to identify which caregivers may be at a higher risk for physical pain. We analyzed data collected from 1,930 caregivers who participated in the National Study on Caregiving (2017). We utilized modified Poisson models to estimate adjusted associations of caregiver and care recipient characteristics with the relative prevalence of arthritis and bothersome pain. 40% of caregivers had a lifetime diagnosis of arthritis. 75% of caregivers with arthritis reported bothersome pain, nearly 30% of whom endorsed bothersome pain that limited their activities on most or every day of the previous month (i.e., activity-limiting bothersome pain). Regardless of whether they had arthritis, 51% of the sample reported bothersome pain in the previous month, 24% of whom indicated activity-limiting bothersome pain. Caregivers who were older or more highly educated had a higher prevalence of arthritis. Black caregivers had a lower prevalence of arthritis and activity-limiting bothersome pain compared to White caregivers. Caregivers with physical difficulty providing care had higher prevalence of arthritis and activity-limiting bothersome pain than caregivers without physical difficulty providing care. Arthritis and activity-limiting bothersome pain are highly prevalent among caregivers. Given increased prevalence of pain among certain caregivers, it may be efficient to target these groups for pain management interventions.

Risk Factors with the Greatest Impact on Caregiver Burden in Informal Homecare Settings in Austria: A Quantitative Secondary Data Analysis

The aim of this study was to reveal the factors that most contribute to caregiver burden in informal adult caregivers, caring for adult care recipients in homecare settings in Austria. A quantitative supplementary secondary analysis based on the dataset of the Austrian Caregiver Study was conducted between February 2021 and March 2022. Based on the dataset of the primary study, which was deemed representative for caregivers in homecare context, 2532 caregivers (92.3% of the cases) were selected for data analysis. Theoretically relevant regressors on caregiver burden, which were available in the dataset, were identified based on an adaptation of Pearlin’s framework of caregiver stress. Data analysis was conducted using descriptive statistics followed by multifactorial analysis of variance and a logistic regression model. Multiple variables, related to (1) sociodemographic characteristics of both care recipients and caregivers; (2) caregiving situation; (3) family-, work-, and finance-related characteristics; (4) availing social support and services, emerged as statistically significant owing to their influence on caregiver burden. Further data analysis illustrated that the five variables with the greatest impact on caregiver burden were as follows: (1) caregiver’s health status, (2) care recipient’s behavioral problems, (3) frequency of provision of direct care, (4) time spent on care, and (5) care dependency level.

Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey

BackgroundInformal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study’s primary objective was to examine informal caregivers’ self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver’s situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress).MethodsAn online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver’s mental health using the DASS-21. Data were analysed using descriptive statistics.ResultsSixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver’s physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation.ConclusionsResults suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD.

Predictors of Burden and Resilience in Family Caregivers of Individuals With Opioid Use Disorder.

Family caregivers are an essential resource for individuals with opioid use disorder (OUD). Overburdened caregivers often experience detrimental effects to their emotional and physical well-being. A cross-sectional, nonexperimental, correlational study was used to identify correlates and predictors of burden and resilience in caregivers of care recipients with OUD. Pearson product-moment correlation and multiple regression analysis were used to explore the relationships between caregiver characteristics, care recipient characteristics, the caregiver-care-recipient dyad characteristics, and burden and resilience among caregivers of individuals with OUD and to determine the best predictive model. Participants ( N = 152) completed the study using an online electronic survey. The standardized regression coefficients indicated that supervision of care recipient behavioral problems (β = .29), dyadic interaction (β = .29), caregiver stress (β = .28), and care recipient opioid use (β = .12) were the strongest predictors of caregiver burden, whereas caregiver mental health (β = -.31) and physical health (β = .30) were the strongest predictors of caregiver resilience. Caregiver and care recipient characteristics, and their dyadic interaction, directly influence the degree of burden and resilience reported by family caregivers. Caregivers experiencing increased stress who are tasked with supervising problematic care recipient behaviors are more likely to experience higher levels of burden. In contrast, caregivers with good physical and mental health and adequate resources showed higher levels of resilience.

Characterizing caregiving supportive services use by caregiving relationship status.

Informal caregivers of older adults experience a high degree of psychosocial burden and strain. These emotional experiences often stem from stressful tasks associated with caregiving. Caregiving supportive services that provide assistance for stressful tasks are instrumental in alleviating caregiving burden and strain. Research is limited on what types of supportive services caregivers are utilizing by relationship status and their source of information regarding these services. We sought to characterize caregiving supportive services use by caregiver relationship status. We analyzed cross-sectional data from the 2015 National Study of Caregiving limited to caregivers of older adults ≥65 years of age. Caregiver relationship status (i.e., spouse, child, other relative/non-relative) was the independent variable. Type of supportive service and source of information about supportive services were the dependent variables. Bivariate analyses were performed to examine the association with caregiver relationship status and associations between use of caregiving supportive services and caregiver and care recipient characteristics. Among service users, we measured associations between caregiver relationship status, type of supportive services used, and source of information about supportive services. Our sample consisted of 1871 informal caregivers, 30.7% reported using supportive services. By caregiver relationship status, children had the greatest use of supportive services compared to spouses and other relatives/non-relatives (46.5% vs. 27.6% vs. 25.9%, p=<0.01, respectively). Among users of services, there were no differences in type of services used. Spouses primarily received their information about services from a medical provider or social worker (73.8%, p=<0.001). Our findings highlight the need to ensure that other caregiving groups, such as spouses and other relatives/non-relatives, have access to important supportive services such as financial support. Medical providers and/or social workers should be leveraged and equipped to provide this information and refer to services accordingly.

Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study.

In the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of-life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers. In a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty. Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiving. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. Caregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non-Hispanic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty. These findings underscore the need to improve training and support for family caregivers in EOL symptom management.

Dementia neuropsychiatric prevalence, severity, and correlates in community‐dwelling Thai older adults

AbstractBackgroundThailand is experiencing a rapid increase in the number of older persons with dementia, yet little is known about the nature and consequences of dementia neuropsychiatric symptoms (NPS), particularly outside of clinical settings. We examined the prevalence, severity, and correlates of NPS, including correlation with family caregiver burden and distress, among community‐dwelling Thai older adults with probable dementia.MethodsThis study is based on analysis of baseline data from a hybrid type III cluster randomized design comparing two different implementation approaches of an evidence‐based exercise intervention for persons with dementia. A three‐step recruitment process was used for recruiting participants from the local healthcare system and included clinical case confirmation of probable degenerative dementia. To be eligible, participants needed to be age 60 and above, have probable dementia, have 1 or more NPS, be ambulatory, and have an adult (age 18+) family caregiver. 353 participants enrolled in the study and completed based assessments, including NPS assessment, caregiver stress associated with NPS, as well as other care recipient and caregiver characteristics. We examined NPS severity with caregiver distress and used ordinary least squares (OLS) regression to examine associations between PWD and caregiver characteristics and NPS severity.ResultsNPS prevalence varied from 18% for appetite/eating changes to 42% for delusions. NPS severity was significantly (P &lt; .05) associated with caregiver stress for all individual NPS. Among PWD characteristics, higher ADL score (less functional impairment) was inversely associated with NPS total severity (b = ‐0.16, p &lt; 0.05). More physical role limitation was significantly associated with higher NPS total severity (b = 0.77, p &lt; 0.001). Among caregivers’ characteristics, higher burden was significantly associated with higher NPS total severity (b = 0.19, p &lt; 0.001).ConclusionsOur study found that NPS are common among community dwelling PWD in Thailand and are associated with adverse impacts on both PWD and family caregivers. These findings highlight the clinical importance of NPS symptoms among Thai older adults. The high prevalence of psychotic symptoms in this community sample is noteworthy and deserves further attention. Results of the parent intervention study will be reported in 2023.

Utilization of Palliative Care in Diffuse Large B Cell Lymphoma Patients Is Linked to Insurance Type and Household Income

Background There is increasing evidence supporting the use of palliative care in the management of both solid and hematologic malignancies. As an integral part of oncologic care, palliative care has been reported to improve survival in diverse malignancies. Our study aimed to describe trends in the utilization of palliative care in diffuse large B cell lymphoma (DLBCL) patients. Methods Patient-level data of patients with DLBCL reported between 2004 to 2019 was extracted from the National Cancer Data Base (NCDB). After excluding 1173 patients with unknown palliative care status, we included 264,549 patients in our analyses. Chi-square tests were used to assess the characteristics of palliative care recipients and non-recipients. Multivariate logistic regression was used to identify the variables which influenced the likelihood of receiving palliative care. Age (<45, 45-59,60-74, 75+), sex (male and female), race (Hispanics, Whites, Blacks, Asian), Charlson-Deyo comorbidity score, insurance status (uninsured, private insurance, Medicare, Medicaid, other government), median household income (<$40227, $40227-$50353, $50,354-$63332, >$63333), educational status (as specified by the database), facility type (community, academic, comprehensive and integrated cancer centers), and year of diagnosis (2004-2007, 2008-2011, 2012-2015, 2016-2019) were variables included in our study. Statistical analyses were performed using SPSS. Results Of 264,549 DLBCL patients, 3.2% (n=8460) utilized palliative care. The utilization of palliative care increased significantly from 2004-2007 to 2016-2019 (2.6% vs 3.71%, p < 0.001). A greater proportion of patients older than 75 years old received palliative care than those younger than 45 years old (5.09% vs 1.66% p<0.001). Patients of Hispanic origin were less likely to receive palliative care compared to Whites (OR 0.74, 95% CI 0.65-0.83). No statistically significant difference in palliative care utilization was found between Whites and other non-Hispanic groups. Privately insured patients had the lowest palliative care utilization amongst all insurance groups and these patients were less likely to receive palliative care compared to uninsured patients (OR 0.70, 95% CI 0.59-0.83). The odds of receiving palliative care were higher at integrated cancer centers than at community care programs (OR 1.17, 95% CI 1.05-1.32). DLBCL patients from households with a median income of >$63,333 were less likely to receive palliative care than those from low-income (<$40,227) households (OR 0.77, 95% CI 0.70-0.85). Conclusions We made several observations in this most up-to-date and largest study on the utilization of palliative care in DLBCL patients. While there is a rise in the use of palliative care in DLBCL in recent years, the overall use of palliative care in these patients remains low. There was a higher utilization of palliative care in patients treated in integrated cancer centers. However, we found an unexpectedly low utilization of palliative care among privately insured patients and in those with higher incomes. A plausible explanation for this finding might be that palliative care measures are not covered by private insurance. It is also possible that affluential patients, and/or those with private insurance, are more likely to pursue novel treatments. Alternatively, these patients might be more likely to be offered further chemotherapy by their oncologists rather than palliative care. These postulates should be further studied and could serve as a guide for health care policy. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

A MIXED-METHODS, RANDOMIZED, CONTROLLED EVALUATION OF REMOTE ACTIVITY MONITORING FOR PERSONS LIVING WITH DEMENTIA

Abstract Remote activity monitoring (RAM) technology has the potential to allow at-home caregivers to track the behaviors and activities of persons with dementia in real-time, thus facilitating more proactive symptom management. The aim of the present study was to assess whether RAM technology was associated with reductions in negative health transitions and service utilization for persons with Alzheimer’s disease or related dementias (ADRD). An embedded experimental mixed methods design was used that included 179 caregivers who were followed over a 1.5 year study period. Participants were randomly assigned to receive the RAM technology system or usual care. Follow-up surveys were administered on a bi-annual basis over an 18-month period that collected information on dementia caregiver and care recipient characteristics and outcomes. We developed multilevel mixed effects models to estimate odds ratios for binary outcomes (falls, wandering, health care admissions) and categorical outcomes (frequency of falls and wandering). In adjusted models, RAM technology use was statistically and significantly associated with lower odds of emergency department visits (p&amp;lt;.05) and less frequent falls (p=.05) for people living with dementia over the 1.5 year study period. Technologies that prevent or delay the onset of negative health events via improved care management and monitoring may enhance the care of persons with dementia. As dementia continues to pose an array of challenges for someone living with ADRD, RAM or similar technologies may offer a solution to the conundrum of dementia care.

THE ROLE OF RELATIONSHIP FACTORS IN HARMFUL CAREGIVER BEHAVIORS: OLDER CHILDREN CARING FOR PARENTS WITH DEMENTIA

Abstract Elder abuse by family caregivers is an often-overlooked phenomenon that affects many older adults. Especially, retirement-aged children caring for their oldest-old parents with dementia may be at greater risk of engaging in harmful or abusive behaviors, given their own age-related health issues and other competing caregiving demands. Most of the elder abuse literature has focused on general demographic predictors of elder abuse, regarding the caregiver, care recipient, and the care environment. Less attention has been paid towards relationship factors, which may play a large role among these parent-child dyads. This study examined how relationship factors are associated with potentially harmful caregiver behaviors (PHCB; e.g., screaming), which have been identified as “early warning signs” for elder abuse. Relationship factors of interest include positive and negative relationship quality measured by caregivers’ mean scores on the support and conflict subscales on the Quality of Relationship Inventory (QRI). We conducted in-depth interviews with 88 caregivers (65+) who are caring for their parents with dementia (90+) as the part of the Boston Aging Together Study. Regression models revealed that relationship conflict was significantly associated with higher levels of PHCB, accounting for caregiver, care recipient, and care environment characteristics. The creation of screeners to identify “high conflict” care dyads could prove useful in the early detection and intervention of potential elder abuse cases, given that caregivers may be more willing to report negative aspects of their relationship (e.g., fighting) than more obviously harmful or abusive behaviors.

EXAMINING SUBJECTIVE BURDEN AMONG SPOUSAL CAREGIVERS OF PARTNERS WITH DEMENTIA: THE IMPACT ON MARITAL QUALITY

Abstract Although sometimes caregiving is associated with closeness in marriage, at other times the stresses may affect marriage relationships negatively. In the current study we explore how caring for a partner with dementia, and subjective burden are associated with marital quality. We further explore how dementia care and subjective burden might interact (suggesting a pileup of stress) to affect marital quality. Using data from 1,066 spousal caregivers that participated in the NSOC study and their corresponding care recipients from the NHATS study, the current analysis explored cross-sectional associations between spousal caregiving (primary vs. Secondary caregiver, subjective burden, gender, age, education) and partner care recipient characteristics (dementia classification, household income) predicting positive and negative marital quality. Results suggested that dementia classification and subjective burden were associated with lower positive marital quality and higher negative marital quality. The relationship between subjective burden and positive marital quality was moderated by whether or not the care recipient had dementia. Specifically, when dementia was present, the negative association between subjective burden and positive marital quality was stronger. Spousal caregivers often carry substantial burden to help their partners with activities of daily living. Care provision can alter the marriage relationship in negative ways when perceived burden is high. The current study suggests that the negative association between burden and positive marital quality is even stronger when caring for a spouse with dementia. Gender differences need further exploration, as well as how these patterns play out in early vs. later stages of dementia and across time.

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta-review.

ObjectivesThe burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta‐review aimed to (1) synthesis evidence on the self‐reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools.MethodsWe conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross‐matching them with the needs derived from the thematic synthesis.ResultsDrawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self‐care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The ‘captured needs’ range between 8% and 66% across all the included needs assessment tools.ConclusionsCurrent tools do not fully or adequately capture the self‐identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID‐19 (SARS CoV‐2) pandemic, the needs assessment tools should align with the self‐reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.