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• What is the primary question addressed by this study? The current study aimed to investigate the temporal association of caregiving stressors and caregiver's anticipatory grief, and its mediation by positive and negative caregiving experiences in severe dementia. • What is the main finding of this study? 35% of the caregivers of older adults with severe dementia reported experiencing high anticipatory grief at least once during the 4-year follow-up period. Negative experiences mediated the effect of older adults' behavioral symptoms and coresidence on caregiver's anticipatory grief. • What is the meaning of the finding? Routine screening for anticipatory grief and interventions targeting caregiving stressors and negative caregiving experiences may alleviate grief. Family caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults' behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers' anticipatory grief, and its mediation by positive and negative caregiving experiences. Prospective cohort. Singapore. About 169 family caregivers of older adults with severe dementia were surveyed every 4 months for 4 years (up to 13 surveys). We measured anticipatory grief using the Marwit Meuser Caregiver Grief Inventory-Short Form, negative caregiving experiences using the Caregiver Reaction Assessment scale, positive caregiving experiences using Gain in Alzheimer Care Instrument and behavioral symptoms using the Cohen-Mansfield Agitation Inventory. We implemented a cross-lagged panel model to test mediation, a form of longitudinal path analysis. About 35% of the caregivers reported high anticipatory grief at least once during the study period. Older adults' behavioral symptoms had a significant direct effect (Standardized coefficient [95% confidence interval]: 0.12 [0.04, 0.21]) on caregivers' anticipatory grief. Negative experiences mediated the significant indirect effect of older adults' behavioral symptoms (0.16 [0.06, 0.25]) and coresidence (0.16 [0.07, 0.25]) on caregivers' anticipatory grief. Positive caregiving experiences did not mediate any path. Findings indicate a temporal association between caregiving stressors and anticipatory grief, mediated by negative caregiving experiences. Routine screening for anticipatory grief, and interventions to address caregiver stressors and negative caregiving experiences may alleviate caregivers' grief. [ABSTRACT FROM AUTHOR]

Background: With advancing illness, some patients with heart failure (HF) opt to receive life-extending treatments despite their high costs, while others choose to forgo these treatments, emphasizing cost containment. We examined the association between patients' health status and their preferences for treatment cost containment versus life extension and whether their patients' awareness of disease incurability moderated this association. Methods: In a prospective cohort of patients (N = 231) with advanced HF in Singapore, we assessed patients' awareness of disease incurability, health status, and treatment preferences every 4 mo for up to 4 y (up to 13 surveys). Using random effects multinomial logistic regression models, we assessed whether patients' awareness of disease incurability moderated the association between their health status and treatment preferences. Results: About half of the patients in our study lacked awareness of HF's incurability. Results from regression analyses showed that patients with better health status, as indicated by lower distress scores (odds ratio [OR] [95% confidence interval {CI}]: 0.862 [0.754, 0.985]) and greater physical well-being (1.12 [1.03, 1.21]); and who lacked awareness of their disease's incurability were more likely to prefer higher cost containment/minimal life extension treatments compared with lower cost containment/maximal life extension. Conclusions: This study underscores the significance of patients' awareness in disease incurability in shaping the relationship between their health status and treatment preferences. Our findings emphasize the need to incorporate illness education during goals-of-care conversations with patients and the importance of revisiting these conversations frequently to accommodate changing treatment preferences. Highlights: The health status of patients with advanced heart failure was associated with their treatment preferences. Patients whose health status improved and who lacked awareness of their disease's incurability were more likely to prefer higher cost containment/minimal life extension treatments. [ABSTRACT FROM AUTHOR]

Purpose: This study examined the feasibility and acceptability of a three‐session, psychological‐based intervention to improve intimacy and sexuality outcomes among women with breast and gynaecologic cancer in Singapore. Method: Patients from outpatient oncology clinics completed screeners for marital and sexual distress. Those who endorsed either marital or sexual distress were invited into the study, and were randomized to receive the intervention immediately or be waitlisted. Intervention feasibility (i.e., reach, adherence) and acceptability (i.e., satisfaction, cultural sensitivity, willingness to pay) and marital, sexual, and body image outcome changes were examined. Results: 1101 patients completed the screener; 24% of patients with breast or gynaecologic cancer reported marital or sexual distress. Forty‐six patients who were eligible participated in the study. The majority (88%) of participants who started the intervention completed all 3 sessions. All (100%) participants who completed the intervention reported satisfaction and the majority (97%) reported they would recommend the intervention to a friend. The majority of participants found the intervention to be culturally sensitive (93%) and reported being willing to pay either out of pocket or through their national medical MediSave account (76%). Outcome changes were in expected directions with small effect sizes (0.24–0.42). Several themes emerged from open‐ended feedback on what participants found useful and how the intervention can be improved. Conclusions: Approximately one quarter of breast or gynaecologic cancer patient who are partnered in Singapore reported marital or sexual distress. Despite the low reach, we found good adherence and high acceptability of the psychological‐based intervention. Our findings suggest there is room to improve awareness and delivery of sexuality‐related care in an oncology setting. Trial Registration: Number and date: NCT03420547, April 10, 2018 [ABSTRACT FROM AUTHOR]

Background Tube feeding is discouraged among older adults with advanced dementia; nevertheless, caregivers often find feeding decisions challenging to navigate. Aim This study aims to gain a comprehensive understanding of tube feeding among community-dwelling older adults with advanced dementia in Singapore and its relationship to older adult quality of life (QoL) and caregiver psychological distress. Methods We use a convergent mixed-methods design, synthesising analysis of qualitative caregiver interviews (n  = 25) and two-year prospective, longitudinal cohort survey data (n  = 215, 1018 observations). Results Findings from the qualitative interviews revealed caregivers' expectations of reduced QoL for older adults with feeding tubes and their own distress related to making feeding decisions and fears prompting plans to tube-feed. Sixteen percent of community-dwelling older adults with advanced dementia relied on feeding tubes during the two-year study period. Adjusting for potential confounding and using instrumental variables estimation, tube feeding was associated with reduced older adult QoL (P  < .05) and increased caregiver anxiety and depression (P  < .10). Conclusion Consistent with expert guidelines, we found that tube feeding was associated with significantly reduced QOL among older adults living with dementia and increased distress among caregivers relative to those of older adults without feeding tubes. Despite caregivers' recognition of reduced QOL associated with older adult use of feeding tubes, many expressed angst related to feeding choices. Our findings suggest the need for decision tools to support caregivers in making informed decisions concordant with their values. [ABSTRACT FROM AUTHOR]

Objectives: To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients' documented preferences. Methods: We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences. Results: Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient's refusal to engage in ACP conversations and family experiencing difficulty in accepting patient's poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients' care) as barriers to providing care consistent with preferences. Significance of results: Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible. [ABSTRACT FROM AUTHOR]

Objectives: Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults' and caregiver characteristics and 1-year mortality among older adults. Methods: We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults' symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults' 1-year mortality; and caregiver outcomes. Results: We delineated 3 profiles of older adults – primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p <0.01 for all). Significance of results: The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers' outcomes. [ABSTRACT FROM AUTHOR]

Background: Older adults with severe dementia are at increased risk of being physically restrained in nursing homes and acute care settings, but little is known about restraint use among those cared for at home. This study explores caregiver‐reported use of restraints among community‐dwelling older adults with severe dementia. Methods: Using cross‐sectional data from 215 family caregivers, we describe restraint use among older adults with severe dementia living at home. We then use multivariable logistic regression to identify factors associated with restraint use. Results: Nearly half (47%) of caregivers reported on older adults who had been subject to restraints. Most caregivers reporting restraint use suggested safety reasons, such as prevention of falls (68%), wandering (30%), and removal of catheters or feeding tubes (29%); and 44% indicated doctors or other health care providers were involved in the decision to restrain. Feeding tubes (OR = 4.16, 95% CI: 1.27–13.59) and physically aggressive agitation behaviors (OR = 1.93, 95% CI: 1.09–3.40) were associated with higher odds of restraint use among older adults with severe dementia. Caregivers who received strong emotional support from friends (OR = 0.45, 95% CI: 0.21–0.95) were less likely to report restraint use while serving as a caregiver to others (OR = 2.77, 95% CI: 1.36–5.63) increased the odds of restraint use. Conclusions: The pervasiveness of restraint use is concerning and suggests a lack of evidence‐based guidance and support for both caregivers and healthcare providers to prevent restraint use among older adults with severe dementia cared for at home. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aims: Economic burden of heart failure is attributed to hospital readmissions. Previous studies assessing risk factors for readmissions have focused on single group of risk factors, were limited to 30‐day readmissions, or did not account for competing risk of mortality. This study investigates the biological, socio‐economic, and behavioural risk factors predicting hospital readmissions while accounting for the competing risk of mortality. Methods and results: In this prospective cohort study, we recruited 250 patients hospitalized with symptoms of advanced heart failure [New York Heart Association (NYHA) Class III and IV] between July 2017 and April 2019. We analysed their baseline survey data and their hospitalization records over the next 4.5 years (July 2017 to January 2022). We used a joint‐frailty model to determine the multifactorial risk factors for all‐cause and unplanned hospital readmissions and mortality. At the time of recruitment, patients' mean (SD) age was 66 (12) years, majority being male (72%) and NYHA class IV (68%) with reduced ejection fraction (72%). 87% of the patients had poor self‐care behaviours, 51% had diabetes and 56% had weak grip strength. Within 2 years of a hospital admission, 74% of the patients had at least one readmission. Among all readmissions during follow‐up, 68% were unplanned. Results from the multivariable regression analysis shows that the independent risk factors for hospital readmissions were biologic—weak grip strength [hazard ratio (95% CI): 1.59 (1.06, 2.13)], poor functional status [1.79 (0.98, 2.61)], diabetes [1.42 (0.97, 1.86)]; behavioural—poor self‐care [1.66 (0.84, 2.49)], and socio‐economic—preference for maximal life extension at high cost for those with high education [1.98 (1.17, 2.80)]. Risk factors for unplanned hospital readmissions were similar. A higher hospital readmission rate increased the risk of mortality [1.86 (1.23, 2.50)]. Other risk factors for mortality were biologic—weak grip strength [3.65 (0.57, 6.73)], diabetes [2.52 (0.62, 4.42)], socio‐economic—lower education [2.45 (0.37, 4.53)], and being married [2.53 (0.37, 4.69)]. Having a private health insurance [0.40 (0.08, 0.73)] lowered the risk for mortality. Conclusions: Risk factors for hospital readmissions and mortality are multifactorial. Many of these factors, such as weak grip strength, diabetes, poor self‐care behaviours, are potentially modifiable and should be routinely assessed and managed in cardiac clinics and hospital admissions. [ABSTRACT FROM AUTHOR]

Background: This study aimed to examine (1) the evolution of patients–caregiver dyad decision‐making role preferences over 3 years and the predictors of these preferences; and (2) discordance in decision‐making role preferences among dyads. Methods: A total of 311 patients with advanced solid cancer and their caregivers in Singapore reported their preferences for decision‐making roles every 3 months. The predictors for decision‐making role preferences among dyads were identified via the actor–partner interdependence framework using a mixed‐effect ordered logistic model. Results: The proportion of patients and caregivers preferring patient‐led decision‐making was higher at the end of third year compared to baseline (patients: 40% vs. 20%, p value <.01; caregivers: 33% vs. 21%, p value =.03). Patients with female (odds ratio [OR], 1.74; p value <.01) and older (1‐year OR, 1.02; p value <.01) caregivers and younger patients (1‐year OR, 0.97; p value <.01) preferred higher involvement in decision‐making. Caregivers with tertiary education (vs. lower education) (OR, 1.59; p value =.02) and those who accurately understood patients' treatment goals (OR, 1.37; p value =.01) preferred greater patient involvement in decision‐making. Conversely, caregivers of female patients (OR, 0.68; p value =.03) and younger patients (1‐year OR, 0.98; p value <.01) preferred lesser patient involvement in decision‐making. The proportion of patient‐caregiver dyads with discordance in preferred decision‐making was lower at the end of the third year (51%) compared to baseline (68%) (p value <.01). Conclusion: Despite a reduction in the proportion of dyads with discordance toward the end‐of‐life, the percentage with discordance remained high throughout the illness trajectory. Interventions facilitating open communication between dyads should be pursued in efforts to decrease dyadic discordance. Despite a reduction in the proportion of dyads with discordance toward the end‐of‐life, the percentage with discordance remained high throughout the illness trajectory. Interventions facilitating open communication between dyads should be pursued in efforts to decrease dyadic discordance. [ABSTRACT FROM AUTHOR]

Background: Little research has examined changes in prognostic awareness (PA) in the last year of life and the extent PA change was associated with anxiety, depression, and spiritual well‐being among metastatic cancer patients. Methods: Two surveys were administered in the last year of life to 176 conveniently sampled Singaporean patients with stage 4 solid cancers. PA was assessed by asking patients whether they were aware that their treatments were unlikely to cure their cancer. Multivariable linear regression models were used to investigate the association of PA change with anxiety, depression, and spiritual well‐being. Results: The proportion of patients with accurate PA increased (39.2%–45.5%; p < 0.05) from the second‐last assessment to the last assessment before death. Those with inaccurate PA decreased (26.1%–20.4%; p < 0.05) while a third of patients remained uncertain at both assessments (34.7% and 34.1%). Compared to patients with inaccurate PA at both assessments, patients who reported accurate PA at both assessments reported worsened anxiety (β = 2.08), depression (β = 3.87), and spiritual well‐being (β = −4.45) while patients who reported being uncertain about their prognosis at both assessments reported worsened spiritual well‐being (β = − 6.30) at the last assessment before death (p < 0.05 for all). Conclusions: Interventions should dually focus on decreasing prognostic uncertainty at the end‐of‐life while minimising the psychological and spiritual sequelae associated with being prognostically aware. More research is needed to clarify the causes of prognostic uncertainty. [ABSTRACT FROM AUTHOR]

Objective: We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. Methods: We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients' quality of life and perceived quality of care. Results: The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached (P < 0.05). Compared with no patient involvement, joint decision making was associated with better emotional well-being (β [95% confidence interval] = 1.02 [0.24, 1.81]), better spiritual well-being (1.48 [0.01, 2.95]), lower psychological distress (−1.99 (−3.21, −0.77]), higher perceived quality of care coordination (5.04 [1.24, 8.85]), and physician communication (5.43 [1.27, 9.59]). Patient-led decision making was associated with better spiritual well-being (1.69 [0.24, 3.14]) and higher perceived quality of care coordination (6.87 [3.17, 10.58]) and physician communication (6.21 [2.15, 10.27]). Conclusion: Joint and patient-led decision-making styles were reported by 61% of the patients and were associated with better quality of life and quality of care. A decrease in the level of patient involvement over time indicates reliance on family and physicians as death approached. Highlights: Among patients with metastatic cancer, the level of patient involvement in decision making decreased slightly as death approached. Joint decision making of patients with their physicians and/or family caregivers and patient-led decision making were associated with better quality of life and perceived quality of care. Patients with metastatic cancer should be encouraged to be involved in decision making together with their physicians and/or family caregivers to potentially improve their end-of-life experience. [ABSTRACT FROM AUTHOR]

Objective: To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression. Methods: 281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes. Results: On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, P = 0.05) and patient/physician-led decision making (from 22% to 34%, P = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, P = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (−0.15 [−0.28, −0.01], P = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (−0.12 [−0.20, −0.03], P = 0.01), and finances (−0.15 [−0.28, −0.03], P = 0.02), and lower anxiety (−0.69 [−1.17, −0.22], P < 0.01), and depressive symptoms (−0.69 [−1.12, −0.26], P < 0.01). Caregivers who reported joint decision making reported higher caregiving esteem (0.07 [0.01, 0.14], P = 0.02). Conclusions: Higher family involvement in decision making was associated with higher caregiver burden and psychological distress. Help should be given so that family caregivers can support patient decision-making in a meaningful way. Highlights: Compared with baseline, a lower proportion of caregivers at the 36-mo follow-up reported family-led or family-alone decision making, and a higher proportion of caregivers reported patient-led or physician-led decision making. Higher levels of family involvement in decision making were associated with burdens on caregivers' daily life, health, and finances and increased caregiver anxiety and depression. Support must be given so that family members can contribute to making medical decisions in a rewarding manner. [ABSTRACT FROM AUTHOR]