Table 1 Sample and caregiving situation characteristics; mean (SD) or %
Characteristic | People with dementia living at home | |||
|---|---|---|---|---|
Baseline (n = 198) | Year 1 (n = 74) | Year 2 (n = 44) | ||
Patients | ||||
 Age (years) | 81.3 (6.6) | 81.8 (6.8) | 82.1 (7.3) | |
 Gender (female) | 105 (53.0) | 37 (50.0) | 22 (50.0) | |
 Marital status (single) | 72 (36.4) | 22 (29.7) | 13 (29.5) | |
 Lives alone (yes) | 65 (32.8) | 20 (27.0) | 11 (25.0) | |
 Health status (score 0–10) | 5.8 (1.9) | 5.0 (1.7) | 5.5 (1.6) | |
 Co-morbidity | - No | 43 (21.7) | 11 (14.9) | 4 (9.1) |
- Mild | 37 (18.7) | 19 (25.7) | 9 (20.5) | |
- Moderate | 79 (39.9) | 34 (45.9) | 19 (43.2) | |
- Severe | 39 (19.7) | 10 (13.5) | 12 (27.3) | |
 Supervision | - Needs constant supervision | 45 (22.7) | 13 (17.6) | 9 (20.5) |
- Can be left alone for one hour at the very most | 46 (23.2) | 29 (39.2) | 12 (27.3) | |
- Can easily be left alone for a couple of hours | 107 (54.1) | 32 (43.2) | 23 (52.3) | |
 Care dependence (score 0–10) | 7.0 (2.4) | 7.1 (2.0) | 7.2 (2.0) | |
Informal carers | ||||
 Age (years) | 66.6 (12.9) | 69.6 (12.8) | 70.3 (12.5) | |
  - 65 years or older | 112 (56.5) | 48 (64.9) | 28 (63.6) | |
 Gender (female) | 133 (67.2) | 47 (63.5) | 28 (63.6) | |
 Marital status (single) | 33 (16.7) | 13 (17.6) | 7 (15.9) | |
 Children at home (yes) | 19 (9.6) | 7 (9.5) | 4 (9.1) | |
 Education level | - Low | 24 (12.1) | 8 (10.8) | 5 (11.4) |
- Middle | 120 (60.6) | 46 (62.2) | 24 (54.5) | |
- High | 54 (27.3) | 20 (27) | 15 (34.1) | |
 Employed (yes) | 57 (28.8) | 16 (21.6) | 8 (18.2) | |
 Health status (score 0–10) | 7.3 (1.6) | 6.7 (1.8) | 6.9 (1.5) | |
 Well-being (score 0–10) | 6.4 (1.8) | 6.4 (2.0) | 6.4 (1.8) | |
Relationship | ||||
 Care recipient is… | - Partner | 109 (55.0) | 48 (64.9) | 29 (65.9) |
- Parent (in-law) | 74 (37.4) | 21 (28.4) | 11 (25.0) | |
- Other (family) relationship | 15 (7.6) | 5 (6.8) | 4 (9.1) | |
 Co-residents (yes) | 116 (58.6) | 50 (67.6) | 31 (70.5) | |
Objective burden | ||||
 Duration of caregiving (years) | 3.2 (2.2) | 4.2 (2.5) | 5.4 (2.8) | |
 Intensity of caregiving | (days per week) | 4.8 (2.8) | 5.5 (2.5) | 5.3 (2.6) |
(hours per week) | 38.6 (41.5) | 42.3 (42.9) | 34.2 (34.4) | |
 Formal care at home (yes) | 146 (73.7) | 68 (91.9) | 41 (93.2) | |
  - Hours per week, if yes | 8.5 (13.2) | 5.8 (6.6) | 11.4 (21.6) | |
 Formal day-care away from home (yes) | 125 (63.1) | 48 (64.9) | 26 (59.1) | |
 Support by other informal carers (yes) | 108 (54.5) | 33 (44.6) | 20 (45.5) | |
  - Hours per week, if yes | 9.0 (11.2) | 7.2 (5.6) | 10.4 (9.8) | |
 Adjustments: | - Adjusted working hours (if applicablea) | 49 (24.6) | 5 (6.3) | 11 (25) |
- Reduced volunteer work (if applicableb) | 81 (40.8) | 15 (20.0) | 4 (9.1) | |
- Abandoned hobbies (if applicablec) | 83 (41.7) | 31 (41.9) | 17 (38.6) | |
Subjective burden | ||||
 Caregiver Strain Index (score 0–13) | 7.9 (3.0) | 7.0 (3.5) | 6.6 (2.7) | |
  - Substantial strain (CSI score ≥ 7) | 136 (68.7) | 42 (56.8) | 22 (50.0) | |
 Self-Rated Burden (score 0–10) | 6.0 (2.2) | 5.5 (2.4) | 5.6 (2.1) | |
 Perseverance time (months) | 17.8 (11.1) | 20.0 (10.5) | 22.1 (9.3) | |
Desire for additional support | ||||
 Help with caregiving activities (yes) | 88 (44.4) | 35 (47.3) | 11 (25.0) | |
 Emotional support (yes) | 34 (17.2) | 9 (12.2) | 11 (25.0) | |
 Respite (yes) | 71 (35.9) | 14 (18.9) | 16 (36.4) | |
 None (no) | 30 (15.2) | 26 (35.1) | 17 (38.6) | |