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.
- advanced dementia
- palliative homecare
- caregiver burden
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Contributors AH and MK conceptualised the programme. AH, JJC, AL and MK obtained the funding for the programme. AH, RYT and YW analysed the data, interpreted the results and drafted the manuscript. All authors revised the manuscript and approved the final version.
Funding This programme was made possible with funding from Temasek Foundation Cares CLG Limited (Grant number: TC-APP-3-39).
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval This study was approved by the ethics review board of the National Healthcare Group Singapore (2014/00577).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement Data are available upon reasonable request.