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Table 1 Sample and caregiving situation characteristics; mean (SD) or %

From: The perseverance time of informal carers for people with dementia: results of a two-year longitudinal follow-up study

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)
  1. aNumber of respondents employed: n = 57 (baseline); n = 16 (year 1); n = 8 (year 2)
  2. bNumber of respondents doing volunteer work: n = 49 (baseline); n = 15 (year 1); n = 11 (year 2)
  3. cNumber of respondents with a hobby: n = 168 (baseline); n = 136 (year 1); n = 44 (year 2)