Advanced dementia: an integrated homecare programme

• Published in: BMJ supportive & palliative care Vol. 10; no. 4; p. e40
• Main Authors: Hum, Allyn, Tay, Ri Yin, Wong, Yoko Kin Yoke, Ali, Noorhazlina Binte, Leong, Ian Yi Onn, Wu, Huei Yaw, Chin, Jing Jih, Lee, Angel Onn Kei, Koh, Mervyn Yong Hwang
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group LTD 01.12.2020
• Subjects: Aged; Aged, 80 and over; Caregivers; Caregivers - psychology; Cost of Illness; Dementia; Dementia - complications; Dementia - psychology; Dementia - therapy; Enteral nutrition; Female; Geriatrics; Home Nursing - methods; Hospitals; Humans; Likert scale; Male; Malnutrition; Malnutrition - etiology; Malnutrition - prevention & control; Nurses; Nutritional status; Pain; Palliative care; Palliative Care - methods; Patients; Physicians; Prospective Studies; Psychiatric Status Rating Scales; Quality of Life; Questionnaires; Risk Factors; Singapore; Singapore; symptoms; quality-of-life; palliative homecare; caregiver burden; advanced dementia
• ISSN: 2045-435X; 2045-4368
• DOI: 10.1136/bmjspcare-2019-001798

ObjectivesWe 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.MethodsThis 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.ResultsAt 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.ConclusionAn 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.