Integrated palliative homecare in advanced dementia: reduced healthcare utilisation and costs.

OBJECTIVES: To determine the economic benefit of an integrated home-based palliative care programme for advanced dementia (Programme Dignity), evaluation is required. This study aimed to estimate Programme Dignity's average monthly cost from a provider's perspective; and compare healthcare utilisation and costs of programme patients with controls, accounting for enrolment duration. METHODS: This was a retrospective cohort study. Home-dwelling patients with advanced dementia (stage 7 on the functional assessment staging in Alzheimer's disease) with a history of pneumonia, albumin <35 g/L or tube-feeding and known to be deceased were analysed (Programme Dignity=184, controls=139). One-year programme operational costs were apportioned on a per patient-month basis. Cumulative healthcare utilisation and costs were examined at 1, 3 and 6 months look-back from death. Between-group comparisons used Poisson, zero-inflated Poisson regressions and generalised linear models. RESULTS: The average monthly programme cost was SGD$1311 (SGD-Pounds exchange rate: 0.481) per patient. Fully enrolled programme patients were less likely to visit the emergency department (incidence rate ratios (IRRs): 1 month=0.56; 3 months=0.19; 6 months=0.10; all p<0.001), be admitted to hospital (IRRs: 1 month=0.60; 3 months=0.19; 6 months=0.15; all p<0.001), had a lower cumulative length of stay (IRRs: 1 month=0.78; 3 months=0.49; 6 months=0.24; all p<0.001) and incurred lesser healthcare utilisation costs (ß-coefficients: 1 month=0.70; 3 months=0.40; 6 months=0.43; all p<0.01) at all time-points examined. CONCLUSION: Programme Dignity for advanced dementia reduces healthcare utilisation and costs. If scalable, it may benefit more patients wishing to remain at home at the end-of-life, allowing for a potentially sustainable care model to cope with rapid population ageing. It contributes to the evidence base of advanced dementia palliative care and informs healthcare policy making. Future studies should estimate informal caregiving costs for comprehensive economic evaluation.

Cognitive Assessment by Telemedicine: Reliability and Agreement between Face-to-Face and Remote Videoconference-Based Cognitive Tests in Older Adults Attending a Memory Clinic.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has spurred the rapid adoption of telemedicine. However, the reproducibility of face-to-face (F2F) versus remote videoconference-based cognitive testing remains to be established. We assessed the reliability and agreement between F2F and remote administrations of the Abbreviated Mental Test (AMT), modified version of the Chinese Mini-Mental State Examination (mCMMSE), and Chinese Frontal Assessment Battery (CFAB) in older adults attending a memory clinic. METHODS: The participants underwent F2F followed by remote videoconference-based assessment by the same assessor within 3 weeks. Reliability was evaluated using intraclass correlation coefficients (ICC; two-way mixed, absolute agreement), the mean difference between remote and F2F-based assessments using paired-sample t-tests, and agreement using Bland-Altman plots. RESULTS: Fifty-six subjects (mean age, 76±5.4 years; 74% mild; 19% moderate dementia) completed the AMT and mCMMSE, of which 30 completed the CFAB. Good reliability was noted based on the ICC values-AMT: ICC=0.80, 95% confidence interval [CI] 0.68-0.88; mCMMSE: ICC=0.80, 95% CI 0.63-0.88; CFAB: ICC=0.82, 95% CI 0.66-0.91. However, remote AMT and mCMMSE scores were higher compared to F2F-mean difference (i.e., remote minus F2F): AMT 0.3±1.1, p=0.03; mCMMSE 1.3±2.9, p=0.001. Significant differences were observed in the orientation and recall items of the mCMMSE and the similarities and conflicting instructions of CFAB. Bland-Altman plots indicated wide 95% limits of agreement (AMT -1.9 to 2.6; mCMMSE -4.3 to 6.9; CFAB -3.0 to 3.8), exceeding the a priori-defined levels of error. CONCLUSION: While the remote and F2F cognitive assessments demonstrated good overall reliability, the test scores were higher when performed remotely compared to F2F. The discrepancies in agreement warrant attention to patient selection and environment optimization for the successful adaptation of telemedicine for cognitive assessment.

Exploring Differential Perceptions and Barriers to Advance Care Planning in Dementia among Asian Patient-Caregiver Dyads-A Mixed-Methods Study.

A parallel mixed-methods study on 20 patient-caregiver dyads in an Asian population was conducted to explore the differential perceptions and barriers to ACP in dementia. We recruited English-speaking patients with mild dementia and their caregivers. A trained ACP facilitator conducted ACP counseling. Patient-caregiver dyads completed pre-post surveys and participated in post-counseling qualitative interviews. We used mixed-methods analysis to corroborate the quantitative and qualitative data. Differential perceptions of ACP were reported among dyads, with caregivers less inclined for further ACP discussions. Post-ACP counseling, caregivers were significantly more likely to acknowledge barriers to ACP discussions than patients (57.9% versus 10.5%, p = 0.005). Thematic analysis of the interview transcripts revealed four themes around barriers to ACP: patient-related factors (transference of decision making, poor cognition and lack of understanding, and dis-inclination to plan for the future), caregiver-related factors (perceived negative impact on the patient, caregiver discomfort, and confidence in congruent decision making), socio-cultural factors (taboos, superstitions, and religious beliefs), and the inappropriate timing of discussions. In a collectivist Asian culture, socio-cultural factors pose important barriers, and a family-centric approach to initiation of ACP may be the first step towards engagement in the ACP process. For ACP in dementia to be effective for patients and caregivers, these discussions should be culturally tailored and address patient, caregiver, socio-cultural, and timing barriers.

Prognostication in Home-Dwelling Patients with Advanced Dementia: The Palliative Support DEMentia Model (PalS-DEM).

OBJECTIVE: Difficulties with prognostication prevent more patients with advanced dementia from receiving timely palliative support. The aim of this study is to develop and validate a prognostic model for 6-month and 1-year mortality in home-dwelling patients with advanced dementia. DESIGN: Prospective cohort study. SETTING AND PARTICIPANTS: The data set of 555 home-dwelling patients with dementia at Functional Assessment Staging Test stage 7 was split into derivation (n = 275) and validation (n = 280) cohorts. METHODS: Cox proportional hazards regression modeled survival in the derivation cohort using prognostic variables identified in univariate analysis. The model was validated internally and using 10-fold cross-validation. Area under the receiver operating characteristic curve measured the accuracy of the final model. RESULTS: Four hundred nineteen (75.5%) patients died with a median follow-up of 47 days [interquartile range (IQR) 161]. Prognostic variables in the multivariate model included serum albumin level, dementia etiology, number of homecare admission criteria fulfilled, presence of moderate to severe chronic kidney disease, peripheral vascular disease, quality of life in late-stage dementia scores, housing type, and the Australian National Sub-Acute and Non-Acute Patient palliative care phase. The model was refined into a parsimonious 6-variable model [Palliative Support DEMentia Model (PalS-DEM)] consisting of age, dementia etiology, Functional Assessment Staging Test stage, Charlson Comorbidity Index scores, Australian National Sub-Acute and Non-Acute Patient palliative care phase, and 30-day readmission frequency for the prediction of 1-year mortality. The area under the receiver operating characteristic curve was 0.65 (95% confidence interval 0.59-0.70). Risk scores categorized patients into 3 prognostic groups, with a median survival of 175 days (IQR 365), 104 days (IQR 246), and 19 days (IQR 88) for the low-risk (0‒1 points), moderate-risk (2‒4), and high-risk (≥5) groups, respectively. CONCLUSIONS AND IMPLICATIONS: The PalS-DEM identifies patients at high risk of death in the next 1 year. The model produced consistent survival results across the derivation, validation, and cross-validation cohorts and will help healthcare providers identify patients with advanced dementia earlier for palliative care.

Advanced dementia: an integrated homecare programme.

OBJECTIVES: We established an integrated palliative homecare programme for advanced dementia. This study explores patients' symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on these parameters and examines familial caregiver burden. METHODS: This is a prospective cohort study. Patients at Functional Assessment Stage 7, with an albumin level <35 g/L, pneumonia or enteral feeding were recruited. At baseline and regular intervals, the multidisciplinary homecare team used the Pain Assessment in Advanced Dementia, Mini Nutritional Assessment and Neuropsychiatric Inventory Questionnaire (NPI-Q) to identify patients' symptoms, and the Quality of Life in Late-Stage Dementia (QUALID) tool to assess quality-of-life as primary outcomes, stratified by feeding status. The Zarit Burden Interview (ZBI) investigated caregiver burden, stratified by living arrangement and availability of stay-in help. Mann-Whitney U and χ2 tests compared continuous and categorical variables respectively between groups while Wilcoxon signed-rank test compared assessment scores at baseline and on review. RESULTS: At baseline, 49.2% of the 254 patients had pain, 92.5% were malnourished and 85.0% experienced neuropsychiatric challenges. Patients on enteral feeding had lower NPI-Q score (median=3; IQR 1-6) than orally fed patients ((median=4; IQR 2-7), p=0.004) and higher QUALID score (median=25; IQR 21-30 vs median=21; IQR 17-25 for orally fed patients), p<0.0001, indicating a better quality-of-life for orally fed patients. Both symptoms and quality-of-life improved significantly for the 53 patients reviewed at the fifth month. Median ZBI score for caregivers was 26 (IQR 15-36). Having stay-in help reduced it from 39.5 (IQR 25-49) to 25 (IQR 15-35), p=0.001. CONCLUSION: An integrated multidisciplinary palliative homecare team with geriatric training that is accessible all-hours addressed the needs of home-dwelling patients with advanced dementia, improved their quality-of-life and supported families to care for them at home.

Comfort and Satisfaction With Care of Home-Dwelling Dementia Patients at the End of Life.

CONTEXT: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting. OBJECTIVE: The objective of this study was to identify modifiable factors associated with the comfort of dementia patients dying at home and families' satisfaction with care. METHODS: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin <35 g/L, enteral feeding, or pneumonia, were recruited from a palliative homecare program. Independent variables included demographics, medical information, and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients' comfort, whereas the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers' satisfaction two months after bereavement. Gamma regression identified factors independently associated with comfort and satisfaction. RESULTS: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß (95% CI) = 1.823 (0.660-2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [ß (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [ß (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [ß (95% CI) = 0.149 (0.012-0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [ß (95% CI) = 3.969 (1.485-6.453), P = 0.002]. CONCLUSION: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honoring medical intervention preferences, such as those with palliative intent associated with patients' comfort, determined families' satisfaction with care.

Worry About Caregiving Performance: A Confirmatory Factor Analysis.

Recent studies on the Zarit Burden Interview (ZBI) support the existence of a unique factor, worry about caregiving performance (WaP), beyond role and personal strain. Our current study aims to confirm the existence of WaP within the multidimensionality of ZBI and to determine if predictors of WaP differ from the role and personal strain. We performed confirmatory factor analysis (CFA) on 466 caregiver-patient dyads to compare between one-factor (total score), two-factor (role/personal strain), three-factor (role/personal strain and WaP), and four-factor models (role strain split into two factors). We conducted linear regression analyses to explore the relationships between different ZBI factors with socio-demographic and disease characteristics, and investigated the stage-dependent differences between WaP with role and personal strain by dyadic relationship. The four-factor structure that incorporated WaP and split role strain into two factors yielded the best fit. Linear regression analyses reveal that different variables significantly predict WaP (adult child caregiver and Neuropsychiatric Inventory Questionnaire (NPI-Q) severity) from role/personal strain (adult child caregiver, instrumental activities of daily living, and NPI-Q distress). Unlike other factors, WaP was significantly endorsed in early cognitive impairment. Among spouses, WaP remained low across Clinical Dementia Rating (CDR) stages until a sharp rise in CDR 3; adult child and sibling caregivers experience a gradual rise throughout the stages. Our results affirm the existence of WaP as a unique factor. Future research should explore the potential of WaP as a possible intervention target to improve self-efficacy in the milder stages of burden.

Evaluation of an integrated primary care-led dementia shared care program in Singapore: An effectiveness and cost-effectiveness study.

AIM: With an aging Singapore population, there is an increasing demand for dementia care. The present study aimed to evaluate the effectiveness and cost-effectiveness of the Primary Care Dementia Clinic (PCDC) in comparison with the Memory Clinic (MC; hospital-based) and other polyclinics. METHODS: A quasi-experimental design was implemented. Effectiveness of PCDC was assessed through caregiver satisfaction, quality of life (caregiver-rated) and adverse events rates. Quality-of-Life measures using the EuroQol 5 Dimension Questionnaire (EQ-5D) at baseline, 6 months and 12 months was assessed. Costs were calculated from a societal perspective. The incremental cost-effectiveness of the PCDC was compared with MC and other polyclinics. RESULTS: The present study showed that quality of life and the rate of adverse events at 12 months were similar between the three groups. Caregiver satisfaction at 12 months was higher in the PCDC group when compared with other polyclinics. There were no observed differences in societal cost between the three groups. At 6-month follow up, direct medical costs for PCDC were significantly lower that of other polyclinics. At 12-month follow up, PCDC patients had higher Quality Adjusted Life Years (QALYs) compared with the MC group. CONCLUSION: PCDC provided effective care, similar to care at MC and better than care at other polyclinics. Caregiver satisfaction was higher for the PCDC group, and PCDC patients had lower direct medical costs at 6-month follow up. Given these findings, adopting a PCDC model in other polyclinics in Singapore can be beneficial for optimal right siting of patients. Geriatr Gerontol Int 2018; 18: 479-486.

Burden among Family Caregivers of Dementia in the Oldest-Old: An Exploratory Study.

BACKGROUND: With >85 years, the fastest growing age segment in developed countries, dementia in the oldest-old is projected to increase exponentially. Being older, caregivers of dementia in oldest-old (CDOO) may experience unique challenges compared with younger-age groups. Thus, we aim to explore demographic characteristics and burden pattern among CDOO. METHODS: We studied 458 family caregiver-patient dyads attending an outpatient memory clinic. We classified patients into three age-groups: <75, 75-84, and ≥85 years. We measured caregiver burden using the Zarit Burden Interview (ZBI) 4-factor structure described by Cheah et al. (1). We compared care recipient characteristics, caregiver demographics, and ZBI total/factors scores between the three age-groups, and performed 2-way analysis of variance (ANOVA) to ascertain the effect of age-group by disease severity interaction. RESULTS: Oldest-old care recipients were more impaired in cognitive function and instrumental ADL; there was no difference in behavior and basic ADL. Compared with the other two age-groups, CDOO were older (mean age: 50.4 vs 55.5 vs 56.8 years, P < 0.01), and overwhelmingly adult children (85.9%) as opposed to spouses (5.3%). CDOO also had higher ZBI total score, role strain, and personal strain (all P < 0.05). However, there was no difference in worry about performance scores. 2-way ANOVA did not reveal significant age-group by disease severity interaction for ZBI total and factor scores, although distinctive differences were seen between role/personal strain with worry about performance in mild cognitive impairment and very mild dementia. CONCLUSION: Our study highlighted that CDOO were mainly older adult children who experienced significant role and personal strain independent of disease severity while caring for their family member with more impaired cognitive and physical function. These results pave the way for targeted interventions to address the unique burden faced by this rapidly growing group of caregivers.

A Combined Cognitive Stimulation and Physical Exercise Programme (MINDVital) in Early Dementia: Differential Effects on Single- and Dual-Task Gait Performance.

BACKGROUND: Gait disorders are common in early dementia, with particularly pronounced dual-task deficits, contributing to the increased fall risk and mobility decline associated with cognitive impairment. OBJECTIVE: This study examines the effects of a combined cognitive stimulation and physical exercise programme (MINDVital) on gait performance under single- and dual-task conditions in older adults with mild dementia. METHODS: Thirty-nine patients with early dementia participated in a multi-disciplinary rehabilitation programme comprising both physical exercise and cognitive stimulation. The programme was conducted in 8-week cycles with participants attending once weekly, and all participants completed 2 successive cycles. Cognitive, functional performance and behavioural symptoms were assessed at baseline and at the end of each 8-week cycle. Gait speed was examined under both single- (Timed Up and Go and 6-metre walk tests) and dual-task (animal category and serial counting) conditions. A random effects model was performed for the independent effect of MINDVital on the primary outcome variable of gait speed under dual-task conditions. RESULTS: The mean age of patients enroled in the rehabilitation programme was 79 ± 6.2 years; 25 (64.1%) had a diagnosis of Alzheimer's dementia, and 26 (66.7%) were receiving a cognitive enhancer therapy. There was a significant improvement in cognitive performance [random effects coefficient (standard error) = 0.90 (0.31), p = 0.003] and gait speed under both dual-task situations [animal category: random effects coefficient = 0.04 (0.02), p = 0.039; serial counting: random effects coefficient = 0.05 (0.02), p = 0.013], with reduced dual-task cost for gait speed [serial counting: random effects coefficient = -4.05 (2.35), p = 0.086] following successive MINDVital cycles. No significant improvement in single-task gait speed was observed. Improved cognitive performance over time was a significant determinant of changes in dual-task gait speed [random effects coefficients = 0.01 (0.005), p = 0.048, and 0.02 (0.005), p = 0.003 for category fluency and counting backwards, respectively]. CONCLUSION: A combined physical and cognitive rehabilitation programme leads to significant improvements in dual-task walking in early dementia, which may be contributed by improvement in cognitive performance, as single-task gait performance remained stable.

New DSM-V neurocognitive disorders criteria and their impact on diagnostic classifications of mild cognitive impairment and dementia in a memory clinic setting.

OBJECTIVE: To examine diagnostic agreement between Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) Neurocognitive Disorders (NCDs) criteria and DSM, Fourth Edition (DSM-IV) criteria for dementia and International Working Group (IWG) criteria for mild cognitive impairment (MCI) and DSM-V's impact on diagnostic classifications of NCDs. The authors further examined clinical factors for discrepancy in diagnostic classifications between the different operational definitions. METHODS: Using a cross-sectional study in tertiary memory clinic, the authors studied consecutive new patients aged 55 years or older who presented with cognitive symptoms. Dementia severity was scored based on the Clinical Dementia Rating scale (CDR). All patients completed neuropsychological evaluation. Agreement in diagnostic classifications between DSM-IV/IWG and DSM-V was examined using the kappa test and AC1 statistic, with multinomial logistic regression for factors contributing to MCI reclassification as major NCDs as opposed to diagnostically concordant MCI and dementia groups. RESULTS: Of 234 patients studied, 166 patients achieved concordant diagnostic classifications, with overall kappa of 0.41. Eighty-six patients (36.7%) were diagnosed with MCI and 131 (56.0%) with DSM-IV-defined dementia. With DSM-V, 40 patients (17.1%) were classified as mild NCDs and 183 (78.2%) as major NCDs, representing a 39.7% increase in frequency of dementia diagnoses. CDR sum-of-boxes score contributed independently to differentiation of MCI patients reclassified as mild versus major NCDs (OR: 0.01; 95% CI: 0-0.09). CDR sum-of-boxes score (OR: 5.18; 95% CI: 2.04-13.15), performance in amnestic (OR: 0.14; 95% CI: 0.06-0.34) and language (Boston naming: OR: 0.52; 95% CI: 0.29-0.94) tests, were independent determinants of diagnostically concordant dementia diagnosis. CONCLUSION: The authors observed moderate agreement between the different operational definitions and a 40% increase in dementia diagnoses with operationalization of the DSM-V criteria.

Caregiver Burden: Looking Beyond the Unidimensional Total Score.

The Zarit Burden Interview allows caregiver burden to be interpreted from a total score. However, recent studies propose a multidimensional Zarit Burden Interview model. This study aims to determine the agreement between unidimensional (UD) and multidimensional (MD) classification of burden, and differences in predictors among identified groups. We studied 165 dyads of dementia patients and primary caregivers. Caregivers were dichotomized into low-burden and high-burden groups based upon: (1) UD score using quartile cutoffs; and (2) MD model via exploratory cluster analysis. We compared UD versus MD 2×2 classification of burden using κ statistics. Caregivers not showing agreement by either definition were classified as "intermediate" burden. We performed binary logistic regression to ascertain differences in predictive factors. The 2 models showed moderate agreement (κ=0.72, P<0.01), yielding 104 low, 20 intermediate (UD "low burden"/MD "high burden"), and 41 high-burden caregivers. Neuropsychiatric symptoms [odds ratio (OR)=1.27, P=0.003], coresidence (OR=6.32, P=0.040), and decreased caregiving hours (OR=0.99, P=0.018) were associated with intermediate burden, whereas neuropsychiatric symptoms (OR=1.21, P=0.001) and adult children caregivers (OR=2.80, P=0.055) were associated with high burden. Our results highlight the differences between UD and MD classification of caregiver burden. Future studies should explore the significance of the noncongruent intermediate group and its predictors.

Worry about performance: a unique dimension of caregiver burden.

BACKGROUND: Recent studies that describe the multidimensionality of the Zarit Burden Interview (ZBI) challenge the traditional dual-factor paradigm of personal and role strains (Whitlatch et al., 1991). These studies consistently reported a distinct dimension of worry about caregiver performance (WaP) comprising items 20 and 21.The present study aims to compare WaP against conventional ZBI domains in a predominantly Chinese multi-ethnic Asian population. METHODS: We studied 130 consecutive dyads of family caregivers and patients. Factor analysis of the 22-item ZBI revealed four factors of burden. We compared WaP (factor 4) with the other three factors, personal strain, and role strain via: internal consistency; inter-factor correlation; item-to-total ratio across Clinical Dementia Rating (CDR) stages; predictors of burden; and interaction effect on total ZBI score using two-way analysis of variance. RESULTS: WaP correlated poorly with the other factors (r = 0.05-0.21). It had the highest internal consistency (Cronbach's α = 0.92) among the factors. Unlike other factors, WaP was highly endorsed in mild cognitive impairment and did not increase linearly with disease severity, peaking at CDR 1. Multiple regression revealed younger caregiver age as the major predictor of WaP, compared with behavioral and functional problems for other factors. There was a significant interaction between WaP and psychological strain (p = 0.025). CONCLUSION: Our results corroborate earlier studies that WaP is a distinct burden dimension not correspondent with traditional ZBI domains. WaP is germane to many Asian societies where obligation values to care for family members are strongly influential. Further studies are needed to better delineate the construct of WaP.

Cost of informal care for community-dwelling mild-moderate dementia patients in a developed Southeast Asian country.

BACKGROUND: Cost of informal care constitutes an important component of total dementia care cost. It also reflects resource utilization by patients and caregivers. We aim to quantify the informal cost of care for mild to moderate dementia patients. METHODS: We recruited 165 patient-caregiver dyads with mild to moderate dementia. Informal care burden was assessed using the Resource Utilization in Dementia (RUD)-Lite instrument. A generalized linear model was fitted for association between cost of informal care and cognitive impairment, taking into account patient demographics, disease factors, and use of paid domestic help. Marginal estimates were obtained from the model for the purpose of illustration and discussion. RESULTS: Total hours of informal care by primary caregiver doubled in moderate dementia patients, with 57.9% having paid domestic help to assist in care. Functional factors and use of paid domestic help were significantly associated with informal care costs. Costs were consistently higher for patients without paid domestic help for mild- and moderate dementia. CONCLUSION: This study demonstrates the informal care costs of caring for mild-moderate dementia patients in Singapore, with the unique cost savings provided by live-in paid domestic help, and potentially may aid policy-makers in allocation of resources and support to caregivers.