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.

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.

The challenge of providing holistic care in a viral epidemic: opportunities for palliative care.

OBJECTIVE: To determine, using the perspective of a hospital-based palliative care service (PCS), the spiritual and psychosocial impact of a novel and potentially fatal viral epidemic on patients, their families and health care workers. DESIGN: Qualitative study using semi-structured interviews. The data were analysed using the constant comparative method and were validated using respondent validation. PARTICIPANTS: Eight palliative care workers. SETTING: Tan Tock Seng Hospital (TTSH), the hospital designated to manage all cases of Severe Acute Respiratory Syndrome (SARS) in Singapore. RESULTS: Disease containment resulted in isolation, where isolation meant the disruption of connectedness. This disruption of connectedness took place at multiple levels: in the patient himself, between the patient and the family, within the family, between the patient and the health care worker, between the patient and society, and between health care workers. As the nature of the disease was uncertain, prognostication was inaccurate. This created difficulties in helping patients and their families prepare for death. The fear of facing the unknown led to safety-seeking behaviours, which could be overcome by repeated exposure to the feared situation. The process of bereavement was disturbed, as traditional death rituals could not be performed by the family. Informants perceived themselves to be suffering as they suffered the same anxieties, fears and grief as the patient. CONCLUSIONS: Dealing with a novel viral epidemic creates spiritual and psychosocial issues similar to those encountered in a palliative care practice. Palliative care workers would do well to be aware of such issues and act proactively when such epidemics arise.