Resident and carer evaluation data compared with a larger cohort
| Baseline assessment | Cohort study (n=52)* | NH1 (n=3) | NH2 (n=6) |
| Functional Assessment Staging Scale | |||
| 6b–6d (Unable to bathe independently— urinary incontinence) | 0 | 0 | 1 |
| 6e–7b (doubly incontinent—loss of ability to speak >6 words) | 21 | 1 | 4 |
| 7c–7e (ambulatory ability lost—can’t hold up head independently) | 31 | 2 | 1 |
| Charlson Comorbidity Index median (IQR) | 6 (6–7) | 6 (4–7) | 5 (4–6) |
| Bedford Alzheimer Nursing Severity Scale median (IQR) | 22 (18–23) | 22 (21–24) | 22 (20–23) |
| Final visit | Cohort study (n=52) | NH1 (n=3) | NH2 (n=6) |
| Waterlow Scale (pressure ulcer risk) | |||
| High risk (15-19) | 14 (27) | 1 (33) | 1 (17) |
| Very high risk (≥20) | 36 (69) | 2 (67) | 4 (67) |
| Neuropsychiatric inventory—number of symptoms, median (IQR) | 4 (1.5–6) | 2 (2–5) | 4 (2–6) |
| Cohen-Mansfield Agitation Inventory: behavioural disturbances (≥39) | 29 (56) | 1 (33) | 3 (50) |
| Pain Assessment in Advanced Dementia Scale: (n, %) | |||
| Rest (≥2) | 10 (19) | 0 (0) | 2 (33) |
| Movement (≥2) | 29 (60) | 2 (67) | 1 (17) |
| Symptom Management at EOL in Dementia Scale median (IQR) | 26 (20–35) | 30 (26–32) | 33 (31–37) |
| Quality of Life in Late Stage Dementia Scale median (IQR) | 24.5 (20–28.5) | 23 (23–31) | 25 (20–28) |
| Carer measures: | (n=23) | (n=0) | (n=4) |
| Zarit Burden Interview median (IQR) | 11 (6–18) | 23 (15–28) | |
| Hospital Anxiety and Depression Scale ≥8 n (%) | |||
| Anxiety | 8 (35) | 2 (50) | |
| Depression | 5 (21) | 2 (50) | |
| Satisfaction with Care at EOL in Dementia Scale median (IQR) | 30 (29–33) | 34 (28–39) | |
| Resource Utilization in Dementia Questionnaire median (IQR) | |||
| Visits from doctor, physiotherapist, psychologist, other HCP in previous month | 1 (1–3) | 0 (0–2) | 1 (1–2) |
| All general hospital admissions in previous month | 0.5 (0–1) | 0 (0–0) | 0 (0–0) |
Charlson Comorbidity Index (19 diseases)29
Bedford Alzheimer Nursing Severity Scale: range 7–28, higher scores indicate severity30
Waterlow Scale: range 2–46, higher score higher pressure ulcer risk31
Neuropsychiatric Inventory: total symptoms, maximum 1232
Cohen-Mansfield Agitation Inventory: range 29–203, scores ≥39 indicates clinically significant agitation33
Pain Assessment in Advanced Dementia Scale: range 0–10; scores ≥2 indicates pain34
Symptom Management at EOL in Dementia: range 0–45; higher scores indicate better symptom control35
Quality of Life in Late Stage Dementia Scale: range 11–55, lower scores indicate better quality of life36
Zarit Burden Interview: range 0–88, higher scores indicate greater burden37
Hospital Anxiety and Depression Scale: Anxiety and depression subscales range 0–21, scores ≥8 indicate clinically significant depression or anxiety38
Satisfaction with Care at EOL in Dementia: range 10–40; higher scores indicate more satisfaction with EOL care35
Resource Utilization in Dementia Questionnaire39
*The cohort study involved 85 residents in total but this table only includes the 52 participants who survived the 9-month data collection period.
EOL, end of life; HCP, health care professional