Cancer has become a chronic disease that requires a considerable amount of informal caregiving, often quite burdensome to family caregivers. However, the influence of spirituality on the caregivers’ burden and mental health outcomes has been understudied. This study was to examine how caregiver burden, spirituality, and depression change during cancer treatment and investigate the moderating role of spirituality in the relationship between caregiver burden and depression for a sample of caregivers of persons with cancer.

This secondary analysis used a longitudinal design employing 3 waves of data collection (at baseline, 3 months, and 6 months). Family caregivers completed the Caregiver Reaction Assessment, Spiritual Perspective Scale, and the PROMIS® depression measure. Linear mixed model analyses were used, controlling for pertinent covariates.

Spirituality, total caregiver burden, and depression remained stable over 6 months. More than 30% of the caregivers had mild to severe depressive symptoms at 3 time points. There was evidence of overall burden influencing depression. Of note was a protective effect of caregivers’ spirituality on the relationship between depression and caregiver burden over time (b = −1.35, p = .015). The lower the spirituality, the stronger the relationship between depression and burden, especially regarding subscales of schedule burden, financial burden, and lack of family support.

Spirituality was a significant resource for coping with caregiving challenges. This study suggests that comprehensive screening and spiritual care for cancer caregivers may improve their cancer caregiving experience and possibly influence the care recipients’ health.

Caregiver burden tends to worsen as severity of dementia increases, and elevated burden can lead to negative consequences for dementia caregivers. In contrast, positive aspects of caregiving, such as feelings of being useful, needed, or appreciated as a caregiver, are associated with better outcomes. Caregivers reporting fewer positive experiences robustly demonstrate greater burden, suggesting that a lack of positive aspects of caregiving could be a key component of the relationship between dementia severity and burden. This study investigated whether an indirect effect of positive aspects of caregiving would be observed on the association between dementia severity and burden.

Data were extracted from the medical records of 724 patients enrolled for services at an outpatient memory clinic. Caregiver-care recipient dyads were included based on a clinically supported patient diagnosis on the dementia spectrum following a comprehensive geriatric evaluation and having fully completed assessments from an informal caregiver. Caregivers completed the Zarit Burden Interview (ZBI) and the Positive Aspects of Caregiving (PAC) measures. The Montreal Cognitive Assessment and Mini-Mental State Exam were used to estimate dementia severity, standardized to create a single variable. Multiple potential covariates (e.g., age, gender, education, nature of dyadic relationship) were considered for inclusion in the model. A cross-sectional mediation analysis using the Hayes PROCESS macro explored presence of an indirect effect of PAC on the relationship between dementia severity and ZBI using 5000 bootstrap samples.

Of the proposed covariates, only caregiver age was correlated with any of the primary variables; this variable was controlled in subsequent analyses. Significant relationships emerged between dementia severity and ZBI (r=-.12, p<.001), between PAC and ZBI (r=-.23, p<.001), and between dementia severity and PAC (r=-.07, p<.05). An indirect effect of positive aspects of caregiving on the relationship between dementia severity and ZBI was statistically significant (B= .0092, BC 95% CI [.0008, .0185]), accounting for 14.4% of the variance in the model.

A small but significant indirect effect of positive aspects of caregiving was observed on the association between dementia severity and burden. Results suggest that as dementia severity worsens, a caregiver who experiences greater positive aspects of caregiving will sustain less burden. Longitudinal examination of these relationships is needed to fully understand causality. Findings may help healthcare providers tailor treatment to alleviate caregiver burden.

Parkinson’s disease (PD) is a neurodegenerative disorder affecting over 10 million people worldwide. PD is characterized by both motor (e.g., tremor, rigidity, and bradykinesia) and non-motor (including cognitive impairment and neuropsychiatric symptoms such as apathy, disinhibition, executive dysfunction) symptoms. Caregiver burden is prevalent in those providing care for patients with PD and can result in negative health complications. Past work shows associations between motor symptoms, cognitive impairment, neuropsychiatric symptoms, and caregiver burden in PD. However, their relative contributions are poorly understood. This study examined these relationships, hypothesizing that while motor symptoms, cognitive impairment, and neuropsychiatric symptoms would all affect caregiver burden, neuropsychiatric symptoms would predict burden above and beyond the contribution of the other factors

Participants were 42 people living with PD who were assessed at a hospital-based tertiary movement disorders specialty clinic for deep brain stimulation (DBS) candidacy evaluation with their caregiver. Motor exam was assessed by a PD specialist using the Unified Parkinson’s Disease Rating Scale (UPDRS). The Mini Mental State Examination (MMSE) assessed global cognition. Frontal Systems Behavior Scale (FrSBe) Family Form captured caregiver ratings of neuropsychiatric symptoms under 3 subscales: apathy, disinhibition, and executive dysfunction. The Multidimensional Caregiver Strain Index (MCSI) captured caregiver burden. Linear regression analyses examined relationships between caregiver burden (MCSI) and motor symptoms (UPDRS), cognitive impairment (MMSE), and neuropsychiatric symptoms (FrSBe).

Using linear regression analyses, cognitive impairment (R2=0.08, F(1,41)=4.42, p=0.04) and neuropsychiatric symptoms (R2=0.35, F(1, 41)=21.0, p<0.01) predicted caregiver burden but motor symptoms did not (R2=0.03, F(1,41)=1.30, p=0.26). Hierarchical linear regression revealed that neuropsychiatric symptoms predicted caregiver burden above and beyond the contribution of cognitive impairment (AR2=0.28, AF(1)=12.7, p=0.001), accounting for an additional 28% of the variance in caregiver burden. Follow-up linear regression to examine the relationships between caregiver burden and the FrSBe subscales indicated that apathy (p<0.001), versus disinhibition (p=0.16) and dysexecutive behaviors (p=0.80), was the driver of the significant relationship.

Consistent with our hypothesis, results revealed that cognitive impairment and neuropsychiatric symptoms (specifically apathy) were independent predictors of caregiver burden, with neuropsychiatric symptoms predicting caregiver burden above and beyond the contribution of cognitive impairment. Somewhat surprisingly, motor symptoms were not a predictor of caregiver burden contrary to some previous research, though findings are mixed. Results highlight the importance of assessing for neuropsychiatric symptoms in PD, which may be overlooked by care providers relative to motor or cognitive symptoms, but which appear stressful to caregivers. Future directions include reexamining results in a larger more heterogenous sample including people living with PD at different disease stages (i.e., everyone in the present sample had severe enough symptoms to be considering DBS). Cognitive measures of executive functioning (which are more specific to PD than measures of global cognition) should also be included in future works. Development of supportive caregiver interventions specifically targeting apathy in PD may be useful. Longitudinal designs would be helpful to reexamine relationships following DBS surgery, as there are some reports of increased neuropsychiatric symptoms following the procedure.

There are numerous adverse health outcomes associated with dementia caregiving, including increased stress and depression. Caregivers often face time-related, socioeconomic, geographic, and pandemic-related barriers to treatment. Thus, implementing mobile health (mHealth) interventions is one way of increasing caregivers’ access to supportive care. The objective of the current study was to collect data from a 3-month feasibility trial of a multicomponent mHealth intervention for dementia caregivers.

40 community-dwelling dementia caregivers were randomized to receive the CARE-Well (Caregiver Assessment, Resources, and Education) App or internet links connected to caregiver education, support, and resources. Caregivers were encouraged to use the App or links at least 4 times per week for 3 months. The App consisted of self-assessments, caregiver and stress reduction education, behavior problem management, calendar reminders, and online social support. Caregivers completed measures of burden, depression, and desire to institutionalize at baseline and post-intervention. Feasibility data included App usage, retention and adherence rates, and treatment satisfaction. Data were analyzed via descriptive statistics.

Caregivers were mostly white (95%), female (68%), in their mid-60s, (M= 66.38, SD= 10.64), and well-educated (M= 15.52 years, SD= 2.26). Caregivers were mainly spouses (68%) or adult children (30%). Care recipients were diagnosed with mild (60%) or moderate (40%) dementia, with 80% diagnosed as having Alzheimer’s disease. Overall, the study had an 85% retention rate (80% for App group; 90% for links group). 58% of caregivers in the App group were considered high users, using the App >120 minutes over the course of 3 months (M= 362.42, SD= 432.68), and an average of 16.44 days (SD= 15.51). 15% of the sample was non-adherent due to time constraints, disinterest, and/or technology issues. Most participants (75%) using the App were mostly or very satisfied, about 87% would be likely or very likely to seek similar programs in the future, and 93% found the App mostly or very understandable. Groups did not significantly differ on clinical outcomes, although the study was not powered for an efficacy analysis. Within groups analysis revealed significant increases in depressive symptoms at post-treatment for caregivers in both groups.

This study demonstrated initial feasibility of the CARE-Well App for dementia caregivers. App use was lower than expected, however, high satisfaction, ease of use, and willingness to use similar programs in the future were endorsed. Some caregivers did not complete the intervention due to caregiving responsibilities, general disinterest, and/or technology issues. Although the study was not designed to assess clinical outcomes, we found that both groups reported higher depressive symptoms at post-treatment. This finding was unexpected and might reflect pandemic-related stress, which has been shown to particularly impact dementia caregivers. Future studies should address the efficacy of multicomponent mHealth interventions for dementia caregivers and the effects of increased dose on clinical outcomes. mHealth interventions should be refined to cater to varying levels of technology literacy among caregivers, and further research should aim to better integrate interventions into caregivers’ routines to enhance treatment engagement.

An understanding of factors that contribute to informant ratings of patients’ functional abilities is crucial, not only because these ratings are used to diagnose individuals with mild cognitive impairment (MCI) versus dementia, but also because these ratings are commonly used as outcome measures in clinical trials. While these ratings are assumed to be largely accurate, research shows they are subject to biases. Caregiver distress, higher caregiver educational attainment, and higher patient age are associated with a higher discrepancy between informant and patient reports of functional abilities. Studies on informant ratings of functional abilities that simultaneously control for patient objective cognitive abilities remain sparse. The current study aims to evaluate caregiver characteristics as predictors of informant-rated functional status while controlling for patient objective cognitive abilities in MCI.

Individuals with a clinical diagnosis of MCI (Albert, 2011 criteria) were referred to the Cognitive Empowerment Program (CEP), a comprehensive lifestyle program addressing modifiable risk factors associated with progression. This study included cross-sectional data from 118 newly enrolled individuals and their caregivers who served as informants. Patient cognitive functioning was assessed with the Montreal Cognitive Assessment (MoCA). Predictors of interest included caregiver-rated functional abilities (Functional Activities Questionnaire; FAQ), caregiver burden (Zarit Burden Interview; ZBD), caregiver depressive symptoms (Center for Epidemiological Studies Depression scale; CES-D), caregiver stress (Perceived Stress Scale; PSS), and caregivers’ self-rated communicative effectiveness (Communicative Effectiveness Index; CETI). Hierarchical linear regression models were run to predict FAQ while controlling for patient MoCA scores. Separate models were run for the caregiver variables of interest including caregiver age, ZBD, CES-D, PSS, and CETI.

Caregivers were 75.6% spouses, 17.1% adult children, 3.3% unmarried partners/cohabitating partners, and 4.1% friends. The mean age of individuals with MCI was 74.7 years (SD: 6.96, mean education = 16.2±2.60 years; 47% female) and the mean age of caregivers was 66.4 (SD: 12.88, mean education = 16.3±2.34; 66% female). Worse ratings of functional abilities on the informant-rated FAQ were found for patients with lower MoCA scores (ß = .242, p = .008). Importantly, while controlling for MoCA scores, worse ratings of functional abilities on the FAQ were found for informants with lower age (ß = -0.269, p = .003), higher perceived stress (ß = 0.267, p = .003), higher caregiver burden (ß = 0.289, p < 0.001), and lower self-rated communication effectiveness (ß = -0.324, p < .001). Caregiver depression (ß = 0.089, p = .084) and education (ß = -0.137, p = .147) were not significant predictors of functional ability ratings while controlling for MoCA scores.

Results of the current study highlight the potential for biases in informant ratings regarding functional abilities in MCI. Informant ratings were found to be significantly influenced by caregiver age, stress, burden, and communicative effectiveness. A key finding is that younger caregivers, such as adult children, may report greater functional impairment in individuals with MCI. The current findings have implications for the use of perceived functional ratings, both for diagnostic purposes and as outcome measures in clinical trials.

Patients and their families often ask clinicians to estimate when full-time care (FTC) will be needed after Alzheimer's Disease (AD) is diagnosed. Although a few algorithms predictive algorithms for duration to FTC have been created, these have not been widely adopted for clinical use due to questions regarding precision from limited sample sizes and lack of an easy, user friendly prediction model. Our objective was to develop a clinically relevant, data-driven predictive model using machine learning to estimate time to FTC in AD based on information gathered from a) clinical interview alone, and b) clinical interview plus neuropsychological data.

The National Alzheimer's Coordinating Center dataset was used to examine 3,809 participants (M age at AD diagnosis = 76.05, SD = 9.76; 47.10% male; 87.20% Caucasian) with AD dementia who were aged >50 years, had no history of stroke, and not dependent on others for basic activities of daily living at time of diagnosis based on qualitative self or informant report. To develop a predictive model for time until FTC, supervised machine learning algorithms (e.g., gradient descent, gradient boosting) were implemented. In Model 1, 29 variables captured at the time of AD diagnosis and often gathered in a clinical interview, including sociodemographic factors, psychiatric conditions, medical history, and MMSE, were included. In Model 2, additional neuropsychological variables assessing episodic memory, language, attention, executive function, and processing speed were added. To train and test the algorithm(s), data were split into a 70:30 ratio. Prediction optimization was examined via cross validation using 1000 bootstrapped samples. Model evaluation included assessment of confusion matrices and calculation of accuracy and precision.

The average time to requiring FTC after AD diagnosis was 3.32 years (Range = 0.53-14.57 years). For the clinical interview only model (Model 1), younger age of onset, use of cholinesterase inhibitor medication, incontinence, and apathy were among the clinical variables that significantly predicted duration to FTC, with the largest effects shown for living alone, a positive family history of dementia, and lower MMSE score. In Model 2, the clinical predictors remained significant, and lower Boston Naming Test and Digit-Symbol Coding scores showed the largest effects in predicting duration to FTC among the neuropsychological measures. Final prediction models were further tested using five randomly selected cases. The average estimated time to FTC using the clinical interview model was within an average of 5.2 months of the recorded event and within an average of 5.8 months for the model with neuropsychological data.

Predicting when individuals diagnosed with AD will need FTC is important as the transition often carries significant financial costs related to caregiving. Duration to FTC was predicted by clinical and neuropsychological variables that are easily obtained during standard dementia evaluations. Implementation of the model for prediction of FTC in cases showed encouraging prognostic accuracy. The two models show promise as a first step towards creation of a user friendly prediction calculator that could help clinicians better counsel patients on when FTC after AD diagnosis may occur, though the development of separate models for use in more diverse populations will be essential.

Caregivers to persons with dementia (PWD) consistently report lower sleep quality than non-caregiving controls. Low sleep quality, in addition to being unhealthy for the caregiver, may also impact the quality of care provided to the PWD. One factor that may contribute to poor sleep among caregivers is neurobehavioral symptoms (NBS) of the PWD. NBS, such as mood changes, lack of motivation, and disinhibition, are consistently rated as some of the most distressing symptoms by caregivers. Furthermore, they can include some symptoms related to sleep, such as nighttime wandering and REM sleep behaviors. Prior correlational research indicates a very strong association between NBS of the PWD and sleep quality of the caregiver. However, there are third variables, particularly demographics of the caregiver, which may better explain this relationship. When these variables are controlled in research, findings on the association between PWD NBS and caregiver sleep quality are mixed. Thus, we sought to investigate the relation between PWD NBS and caregiver sleep quality while controlling for caregiver demographics.

Fifty caregivers to PWD completed a survey containing the Mild Behavioral Impairment Checklist as a measure of PWD NBS, the Pittsburgh Sleep Quality Index as a measure of caregiver sleep quality, and caregiver demographics. The relationship between PWD NBS and caregiver sleep quality was assessed using hierarchical linear regression. First, we examined the relationship between caregiver demographics (age, gender, income) and caregiver sleep quality. Second, we added NBS to the model to assess for incremental predictive utility by examining change in R2.

A significant correlation was found between PWD NBS and caregiver sleep quality, with higher PWD NBS associated with worse caregiver sleep quality (r(48) = .34, p = .014). A hierarchal regression found that caregiver demographics explained a non-significant proportion of variance in reported caregiver sleep quality (F(3, 44) = 1.05, p = .382, R2 = .07). When PWD NBS was added in model two, there was a significant change in variance explained in the overall model (F(1,43) = 2.65, p = .046, AR2 = .13, R2 = .20). Across both models, PWD NBS was the only variable significantly associated with caregiver sleep quality (B = .08, p = .011).

In line with previous studies, these results indicate a moderate relationship between PWD NBS and caregiver sleep quality. Furthermore, findings suggested that PWD NBS is a risk factor for poor caregiver sleep quality, above and beyond caregiver demographic characteristics. Individuals designing interventions aimed at improving caregiver sleep quality should consider including PWD NBS as an intervention target. Future research should replicate these findings in a longitudinal sample to further evaluate causality.

Agitation is a common neuropsychiatric symptom within the dementia spectrum, experienced by 70 percent of individuals with cognitive decline. Prior literature demonstrates a strong association between care recipient agitation and burden in caregivers of individuals with dementia, as these symptoms are often difficult to manage and predict. Understanding how agitation symptoms in the person with dementia may influence caregiver burden is imperative given these strong associations; however, both agitation and burden are complex, multidimensional constructs. Agitation in dementia involves a range of behaviors including increased motor activity, emotional distress, and aggressive behaviors. Caregiver burden is also multi-faceted and often incorporates dimensions of social/relationship, emotional, and physical health strain. The current study sought to determine whether specific presentations of agitation differentially relate to distinct patterns of caregiver burden.

Medical record data from an outpatient memory clinic were extracted for 609 persons with dementia and their caregivers. Caregivers completed the Zarit Burden Interview (ZBI) to assess caregiver burden and the Cohen-Mansfield Agitation Inventory (CMAI) to assess care recipient agitation behaviors. At their initial outpatient appointment, care recipients were also administered a measure of global cognitive functioning (either the Montreal Cognitive Assessment or the Mini-Mental State Examination). Demographic information was extracted from medical records. Exploratory factor analysis was used to determine ZBI and CMAI factor structures. Hierarchical multiple regression analyses then examined whether factors of the CMAI differentially predicted ZBI factors, controlling for dementia severity and demographic variables.

Exploratory factor analysis yielded three domains of agitation on the CMAI ("Physically Aggressive," "Physically NonAggressive," "Verbally Agitated") and four domains of burden on the ZBI ("Impact on Life," "Guilt/Uncertainty," "Embarrassed/Frustrated," and "Overwhelm"). Regression analyses demonstrated all domains of agitation positively predicted overall burden. Regarding specific aspects of burden, Physically Aggressive behaviors predicted only Embarrassment/Frustration (B=.41, SE=.10, ß=.16, p<.001). Non-Aggressive behaviors predicted Impact on Life (B=.14, SE=.05, ß=.13, p<.01) and Guilt/Uncertainty (B=.05, SE=.02, ß=.10, p<.05). Verbally Agitated behaviors predicted all burden dimensions: Impact on Life (B=.35, SE=.06, ß=.32, p<.001), Guilt/Uncertainty (B=.12, SE=.03, ß=.22, p<.001), Embarrassment/Frustration (B=.17, SE=.02, ß=.38, p<.001), and Overwhelm (B=.16, SE=.02, ß=.40, p<.001).

Findings enhance understanding of the relationships between specific agitation symptoms and distinctive aspects of caregiver burden, suggesting that targeted interventions for aspects of caregiver burden based on agitation symptoms may be useful in alleviating burden. Interventions focused on caregivers' feelings of guilt, personal health decline, lack of time for themselves, and fear and uncertainty about the future may be effective when care recipients present with physically nonaggressive behaviors (e.g., pacing, restlessness, inappropriate dress or disrobing). When a care recipient presents with physically aggressive behaviors, helping the caregiver cope with embarrassment or anger may be of benefit. When a care recipient presents with verbally agitated behaviors, interventions targeting burden globally may be most useful. Future work should seek to replicate the current findings and explore such interventions.

Dementia prevalence and its costs to the health system continue to rise, highlighting the need for comprehensive care programs. This study evaluates the Care Ecosystem Program (CE) for dementia (memory.ucsf.edu/Care-Ecosystem) in New Orleans, LA and surrounding areas.

The sample consisted of persons with dementia (PWD) and caregiver (CG) dyads enrolled in the CE from February-2019 to June-2022. Participants had a dementia diagnosis, lived in the community, and had at least one emergency department (ED) visit or hospitalization in the year prior. Healthcare utilization data was collected through self-report and electronic medical records. Dementia rating scales (QDRS, NPIQ) and caregiver wellbeing questionnaires (ZBI-12; PHQ-9; Self-Efficacy) were collected at baseline, 6-months, and 12-months. Dyads received monthly calls providing individualized care-management. One-way repeated measures Anovas were performed to identify change in utilization and caregiver wellbeing at 6-months and 12-months compared to baseline. Partial n2 effect sizes and post-hoc Bonferroni were calculated. Healthcare utilization extreme outliers were winsorized to the 95th percentile and a p-value of .05 was set.

A total of 150 dyads completed the program. PWD's age averaged 81 years (SD=8); they were mostly female (65%), White (63%), and had at least a High School education or higher (88%). CG's age averaged 65 years (SD=11.5); they were predominantly female (77%), White (63%), and had more than 12-years of education (70%). Half of the CGs were adult children (50%), followed by spouse/partners (41%). The QDRS indicated mild-moderate dementia severity, PWD had on average five neuropsychiatric symptoms, and Alzheimer's Disease was the most frequent diagnosis (35%).

A statistically significant decrease occurred in ED visits [F(1, 115)=14.970, p<.001, n2=.115] from baseline to 6-months (MD=1.043, p<.001) and 12-months (MD=.621, p<.001), while an increase was noted when comparing 12-month to 6-month data (MD=.422, p<.001). A similar pattern was observed for hospitalizations [F(1,115)=19.021, p<.001, n2=.142] were admissions were reduced significantly compared to baseline (6-month MD=.483, p<.001; 12-month MD=3.88, p<.001) and an increase was seen after the 6-month mark (MD=.095, p<.001). Caregiver self-efficacy significantly improved [F(1,115)=15.478, p<.001, n2=.119] from baseline to 6-months into the CE (MD=-1.457, p<.001) and was maintained a year after enrollment (MD=-1.474, p<.001). There were no differences in self-efficacy when comparing 6-month and 12-month data. Robust effect sizes were noted for all results previously reported. No other caregiver wellbeing measures showed significant changes over the three time points.

CE successfully reduces healthcare utilization and improves caregiver self-efficacy for PWD-CG dyads 6-months and 12-months after enrollment. The utilization increase noted from the 6-month to the 12-month mark does not surpass baseline rates. This pattern is also consistent with literature reporting that healthcare utilization rises with the progression of dementia. More research is needed to identify potential moderating factors in the relationship between dementia progression and utilization. Future research will also benefit from including control groups to further understand the impact of comprehensive care programs for dementia.

Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden.

In this cross-sectional study, advanced cancer patient–caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients’ symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables.

Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43–6.60]; p = 0.004), anxiety (3.02 [1.19–7.71]; p = 0.021), caring for the patient alone (2.69 [1.26–5.77]; p = 0.011), caregiver perception of patient’s fatigue (1.26 [1.01–1.58]; p = 0.04), and patient’s religion (3.90 [1.21–12.61]; p = 0.02) were independently associated with caregiver burden.

FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient–caregiver dyads to decrease caregiving burden among Latinos.

This study aimed at characterizing 3 populations of family/friend caregivers of patients with different life-threatening organ failure regarding health-related quality of life, caregiver burden, and dyadic coping.

Three cross-sectional (population) studies were conducted at a tertiary hospital in Denmark (2019–2020). Patients with renal failure (RF), cystic fibrosis (CF), and intestinal failure (IF) were asked to designate the closest person with ≥18 years old involved in the care (caregiver) to participate in this study. Number of caregivers included were RF = 78, CF = 104, and IF = 73. Electronic questionnaires were filled in by caregivers to assess health-related quality of life and caregiver burden and by caregivers and respective patients to assess dyadic coping.

The 3 caregiver groups had self-perception of poor health and energy; however, caregivers of CF patients perceived their physical role functioning better than those caregiving for RF and IF patients (p = 0.002). The level of caregiver burden was reported as not high, but caregivers used in average 13 hours/day for caring. Moreover, cleaning tasks (p = 0.005) and personal care (p = 0.009) were more demanding in RF and IF patients. Caregivers also did not differ regarding dyadic coping. When comparing patients and caregivers, stress communication by oneself and the partner differed (p < 0.001).

Caregivers spent many hours in the care role, they reported poor health, and dyadic coping may be improved. Interventions in caregivers of patients with life-threatening organ failure could help to improve care management at home, caregiver’s health, and dyadic coping between caregiver and patient and consequently reduce caregiver burden.

The early introduction of palliative care can have a positive impact on the quality of life of patients suffering from life-limiting diseases. However, the palliative care needs of older, frail, housebound patients are still mostly unknown, as is the impact of frailty on the importance of these needs.

To identify the palliative care needs of frail, older, housebound patients in the community.

We conducted a cross-sectional observational study. This study took place in a single primary care center and included patients who were ≥65 years old, housebound, followed by the Geriatric Community Unit of the Geneva University Hospitals.

Seventy-one patients completed the study. Most patients were female (56.9%), and mean age (SD) was 81.1 (±7.9). The Edmonton Symptom Assessment Scale mean (SD) score was higher in frail patients as opposed to vulnerable patients for tiredness (p = 0.016), drowsiness (p = 0.0196), loss of appetite (p = 0.0124), and impaired feeling of well-being (p = 0.0132). There was no difference in spiritual well-being, measured by the spiritual scale subgroup of the Functional Assessment of the Chronic Illness Therapy–Spiritual Well-Being scale (FACIT-sp) between frail and vulnerable participants, although scores in both groups were low. Caregivers were mainly spouses (45%) and daughters (27.5%) with a mean (SD) age of 70.7 (±13.6). The overall carer–burden measured by the Mini-Zarit was low.

Older, frail, housebound patients have specific needs that differ from non-frail patients and should guide future palliative care provision. How and when palliative care should be provided to this population remains to be determined.

Social distancing to limit COVID-19 transmission has led to extensive lifestyle changes, including for people with dementia (PWD). The aim of this study, therefore, was to assess the impact of lockdown on the mental health of PWD and their carers.

Forty-five carers of PWD completed a telephone interview during the baseline assessment of the SOLITUDE study to gather information on life conditions and changes in symptoms of PWD during lockdown. Associations between changes in symptoms of PWD and carers’ concerns and mental health were investigated.

About 44% of carers experienced anxiety and irritability and reported changes in behavioural and cognitive symptoms in PWD. These changes were associated with worse carers’ mental health and concerns about faster disease progression (χ2 = 13.542, p < 0.001).

COVID-19-related social isolation has had a negative impact on patients’ and carers’ mental health. Potential long-term neurocognitive consequences require further investigation.

Multiple system atrophy (MSA) is a rare Parkinson-plus syndrome with rapid progression and a high symptom burden. The experience of caregivers of people with MSA has not been closely examined. We therefore sought to document the impact of MSA on caregivers using a mixed methods approach.

Patients and caregivers were recruited from a movement disorders program in Edmonton, Canada. Participants completed the following survey instruments based on their own or their loved one’s symptoms: 36-Item Short-Form Health Survey (SF-36), Multiple System Atrophy health-related Quality of Life scale (MSA-QoL), and Hospital Anxiety and Depression Scale (HADS). Caregivers also completed the Zarit Burden Interview and HADS based on their own experience. Qualitative data were obtained through semi-structured interviews.

Nine people with MSA (PwMSA) (age range: 48–78 years) and 11 caregivers (49–76 years) participated. All completed surveys; 7 PwMSA and 10 caregivers were interviewed. Eight PwMSA had the parkinsonian type of MSA (MSA-P) and one a mixed type. Caregivers had on average mild-moderate caregiver burden and mild anxiety. Caregiver burden and anxiety were correlated. Qualitative subthemes under the caregiving theme included keeping the patient safe, caregivers’ own health, and communication symptoms cause frustration. The rapid progression of illness was bewildering to caregivers and increased their workload. Public home care services were invaluable to caregivers’ maintaining their loved ones at home. Caregivers were inventive in finding sources of hope and quality of life for their loved ones.

Publicly funded home care was essential for caregivers of PwMSA in this study. Caregiver support is needed to provide this unrecognized workforce with information and resources to face this challenging condition.