Caregiver coping mediates the relationship between caregivers' understanding of dementia as terminal and their distress.

We assessed which coping strategies (problem-focused, emotion-focused, dysfunctional) mediate the association between caregivers' understanding of dementia as terminal and their distress. A total of 215 caregivers of community-dwelling persons with severe dementia were surveyed every 4 months over 3 years. A generalized structural equation model was used to test mediation. Caregivers who correctly understood dementia as terminal and those unsure (vs incorrect), experienced more distress (correct: ß [95% confidence interval (CI)]: 0.80 [0.00 to 1.60]; unsure: 0.95 [0.04 to 1.87]). Caregivers with correct understanding of dementia as terminal (vs incorrect) employed more dysfunctional (2.01 [0.60 to 3.42]) and problem-focused coping strategies (2.56 [0.08 to 5.05]). Although dysfunctional and problem-focused coping (associated with higher distress) mediated the positive association between caregivers' understanding that dementia is terminal and their distress, emotion-focused coping (associated with lower distress) did not offset this relationship. Results suggest that terminal illness disclosure to caregivers should be accompanied by interventions to promote emotion-focused coping strategies. Highlights Caregivers who understood dementia as terminal experienced more distress. Dysfunctional and problem-focused coping mediated the positive relationship between terminal illness understanding and caregiver distress. Emotion-focused coping did not offset this relationship.

Prognostic understanding among advanced heart failure patients and their caregivers: A longitudinal dyadic study.

OBJECTIVES: To examine heart failure patients' and caregivers' prognostic understanding (PU) over time, and patient and caregiver factors associated with their own and each other's PU. METHODS: We used longitudinal dyadic data from Singapore, involving surveys with 95 heart failure patient-caregiver dyads every 4 months for up to 4 years. We assessed the association of PU with patient health status, caregiver psychological distress and caregiving hours using random effects multinomial logistic models, controlling for patient and caregiver characteristics. RESULTS: At baseline, half of patients and caregivers reported correct PU. Patient and caregiver variables were associated with their own and each other's PU. Patients with poorer functional well-being were less likely to report correct PU [Average Marginal Effects (95 % CI) 0.008 (0.002, 0.015)] versus incorrect PU. Greater caregiver psychological distress was associated with a lower likelihood of caregivers reporting a correct PU [- 0.008 (-0.014, -0.002)]. Higher caregiving hours reduced the likelihood of patients reporting correct [- 0.002 (-0.003, -0.001)] and increased the likelihood of patients reporting uncertain [0.001 (0, 0.002)] PU. CONCLUSIONS: We found PU among patients and caregivers was influenced by their own and each other's experience. Our findings highlight the importance of ongoing communication to enhance PU of patients and caregivers.

More competent informal caregivers reduce advanced cancer patients' unplanned healthcare use and costs.

BACKGROUND: Patients with metastatic cancer experience high healthcare use and costs, most of which are unplanned. We aimed to assess whether patients with more competent informal caregivers have lower unplanned healthcare use and costs. METHODS: This study used data from a prospective cohort of patients with solid metastatic cancer. Patients and their informal family caregivers were surveyed every 3 months until patients' death. Patients' unplanned healthcare use/costs were examined through hospital records. Caregivers responded to the 4-item Caregiver Competence Scale. First, in a deceased subsample of patients and their caregivers, we used patients' last 2 years of data (226 dyads) to assess the association between caregivers' competency (independent variable) and patients' unplanned healthcare use/costs (outcomes). Next, in a prospective sample of patient-caregiver dyads (up to 15 surveys), we assessed whether patients' functional well-being and psychological distress moderated the association between caregivers' competency and unplanned healthcare use/costs (311 dyads). RESULTS: In the deceased subsample, during last 2 years of patients' life, caregivers' higher competency lowered the odds of patients' unplanned healthcare use [OR (CI) = 0.86 (0.75, 0.98), p = 0.03], and was associated with a significant reduction in unplanned healthcare costs [Coeff (CI) = -0.19 (-0.36, -0.01), p = 0.03]. In the prospective sample, patients' functional well-being and psychological distress moderated the association between caregivers' competency and patients' unplanned healthcare use/costs. CONCLUSION: With deterioration in patients' condition and an increase in caregiving demands, improving caregivers' competency can reduce patients' unplanned healthcare use and costs. This should be further tested in future trials.

'I secretly wish. . .' Caregivers' expression of wish for death of persons with severe dementia.

BACKGROUND: Qualitative evidence suggests that caregivers may express a wish for death of persons with severe dementia (PwSD). No study has assessed the extent to which it happens, stability of this wish over time and the factors associated with it. OBJECTIVES: We examined caregivers' wish for death of PwSDs overtime and the factors associated with this wish. METHODS: 215 caregivers of community dwelling PwSDs were surveyed every 4 months for 2 years. Using the mixed-effects multinomial regression model, we assessed the PwSD and caregiver factors associated with caregivers' wish for PwSDs' death. RESULTS: At baseline, 27% caregivers expressed a wish for PwSDs' life to end sooner. Overall, 43% of the caregivers expressed a wish for PwSDs' death at least once during the study period and 11% expressed it consistently. Caregivers' perception of PwSDs' lower quality of life (RRR: 1.05, 95% CI: 1.00, 1.10), higher functional dependency (RRR: 1.1, 95% CI: 1.01, 1.21), eating difficulty (RRR: 2.25, 95% CI: 1.26, 4.04) and suffering (RRR: 1.92, 95% CI: 1.05, 3.52) were associated with this wish. Caregivers who were emotionally close to PwSDs were less likely (RRR: 0.25, 95% CI: 0.11, 0.55) while those who understood that dementia is a terminal illness were more likely (RRR: 2.01, 95% CI: 1.03, 3.92) to express this wish. CONCLUSION: Caregivers' wish for PwSDs' death changed over time and was primarily driven by their perception of PwSDs' poor well-being and awareness of their illness being terminal, indicating a need for increased support in this challenging caregiving context.

Weak grip strength predicts higher unplanned healthcare utilization among patients with heart failure.

AIMS: Frailty increases healthcare utilization and costs for patients with heart failure but is challenging to assess in clinical settings. Hand grip strength (GS) is a single-item measure of frailty yet lacks evidence as a potential screening tool to identify patients at risk of higher unplanned events and related healthcare costs. We examined the association of baseline and longitudinal GS measurements with healthcare utilization and costs among patients with advanced heart failure. METHODS AND RESULTS: Between July 2017 and April 2019, we enrolled 251 patients with symptoms of advanced heart failure (New York Heart Association class III or IV) in a prospective cohort study in Singapore. We measured GS at baseline and every 4 months for 2 years and linked patients' survey data with their medical and billing records. We categorized patients as having weak GS if their GS measurement was below the 5th percentile of the age- and gender-specific normative GS values in Singapore. We assessed the association between baseline GS and healthcare utilization (unplanned and planned events and healthcare costs, total costs, and length of inpatient stay) over the next 2 years using regression models. We investigated the association between longitudinal 4-monthly GS assessments and the ensuing 4 months of healthcare utilization and costs using mixed-effects logistic and two-part regression models. At baseline, 22.5% of patients had weak GS. Baseline and longitudinal GS measurements were significantly associated with longer length of inpatient stay, greater likelihood of unplanned events, and higher related costs. Patients with weak GS had higher odds of an unplanned event occurring by 8 percentage points [95% confidence interval (CI) (0.01, 0.14), P = 0.026], incurred longer inpatient stays by 4 days [95% CI (1.97, 6.79), P = 0.003], and additional SG$ 4792 [US$ ~ 3594, 95% CI (1894, 7689), P = 0.014] in unplanned healthcare costs over the next 4 months. CONCLUSIONS: GS is a simple tool to identify and monitor heart failure patients at risk of unplanned events, longer inpatient stays, and higher related healthcare costs. Findings support its routine use in clinical settings.

Health conditions, payments, proximity, and opportunity costs: Examining delays in seeking inpatient and outpatient care in the Philippines.

Like other developing countries, the Philippines commits to achieving universal health coverage. To identify the factors - including health care needs, financial and physical access, and opportunity costs - associated with delays in seeking outpatient (OP) and inpatient (IP) care among household members with illness, injury or advised by a doctor, this paper estimates Cox and Weibull proportional hazard models using a nationally-representative sample of households surveyed in 2011, when the Philippine government just started implementing major health reforms. Our results indicate that the delays in seeking OP care tend to be shorter for the very young (5 years old or below), the elderly (65 years old or above), and those with prior poor health. Similarly, delays in seeking IP care tend to be shorter among the very young and those requiring maternity services. Moreover, having a college-educated head of household is associated with shorter delays in seeking OP and IP care. Delays in seeking OP care are shorter in the National Capital Region than in other regions, but longer OP delays are associated with presence of a nearby public health facility. Deferrals in seeking IP care are shorter and delays in seeking OP care are longer when the sick or injured member is employed. When the spouse of the household head is employed, IP care is likewise postponed further. Relative to the poorest income quintile, the second- and third-income quintiles tarry longer. Last, insurance coverage and urban location are not found to be significant correlates. To enhance the effectiveness of recent reforms on utilization, these results suggest deepening the awareness of the covered population of their insurance benefits or to monitor the quality of local health facilities, especially that received grants. Labor policies that reduce the opportunity cost of seeking care among the employed may also be considered.