Table 1.
Study sample characteristics.
| Caregivers (N = 141) | Former caregivers (N = 15)a | |
|---|---|---|
| Caregiver characteristics | ||
| Gender (%) | ||
| Women | 96 (68.1) | 12 (80.0) |
| Age in years, mean ± SD | 68.0 ± 7.8 | 67.5 ± 10.7 |
| Relationship to patient (%) | ||
| Spouse | 134 (95.0) | 8 (53.3) |
| Mother/father | 4 (2.8) | 7 (46.7) |
| Grandmother/grandfather | – | – |
| Daughter/son | – | – |
| Sister/brother | 2 (1.4) | – |
| Friend/acquaintance/colleague | 1 (0.7) | – |
| Patient characteristics | ||
| Gender (%) | ||
| Women | 49 (34.8) | 7 (46.7) |
| Age in years (mean ± SD) | 70.6 ± 6.5 | – |
| Living situation (%) | ||
| Living alone | 5 (3.5) | 1 (6.7) |
| Living in a household with partner | 122 (86.5) | 9 (60.0) |
| Live in a household with partner and children | 5 (3.5) | – |
| Staying in the household of the children | 2 (1.4) | – |
| Living in a facility (i.e. nursing or residential home) | 4 (2.8) | 1 (6.7) |
| Other | 3 (2.1) | 4 (26.7) |
| First symptoms of PD (%) | ||
| Less than a year | 1 (0.7) | n/a |
| 1–5 years | 45 (31.9) | n/a |
| 5–10 years | 47 (33.4) | n/a |
| 10–15 years | 24 (17.0) | n/a |
| More than 15 years | 24 (17.0) | n/a |
| Death of person with PD (%) (N = 14) | ||
| Less than a year | n/a | 5 (33.3) |
| 1– 3 years ago | n/a | 2 (13.3) |
| 3–5 years ago | n/a | 2 (13.3) |
| 5 years or longer | n/a | 5 (33.3) |
| Care taking | ||
| Frequency (%) | ||
| Day and night | 63 (44.7) | 9 (60.0) |
| During the day | 40 (28.4) | 3 (20.0) |
| 3–6 times per week | 6 (4.3) | 1 (6.7) |
| 1–2 times per week | 4 (2.8) | – |
| Less than once per week | 7 (5.0) | – |
| Less than once per month | 5 (3.5) | – |
| Very variable | 16 (11.3) | 2 (13.3) |
| Years of care taking (%) | ||
| Less than 6 months | 10 (7.1) | – |
| Between 6 months and a year | 7 (5.0) | 1 (6.7) |
| 1–2 years | 20 (14.2) | – |
| 2–3 years | 21 (14.9) | 1 (6.7) |
| 3–5 years | 16 (11.3) | 2 (13.3) |
| 5–8 years | 24 (17.0) | 1 (6.7) |
| 8–10 years | 14 (9.9) | 1 (6.7) |
| More than 10 years | 29 (20.6) | 9 (60.0) |
| Caregiver burden | ||
| Perseverance time (%), N = 140 | ||
| Less than a week | – | n/a |
| More than 1 week, less than 1 month | 1 (0.7) | n/a |
| More than 1 month, less than 6 months | 4 (2.8) | n/a |
| More than 6 months, less than 1 year | 8 (5.7) | n/a |
| More than 1 year, less than 2 years | 8 (5.7) | n/a |
| More than 2 years | 119 (84.4) | n/a |
| Perceived caregiver burden (%) | ||
| Not or hardly burdened | 44 (31.2) | n/a |
| Somewhat burdened | 48 (34.0) | n/a |
| Rather heavily burdened | 33 (23.4) | n/a |
| Heavily burdened | 12 (8.5) | n/a |
| Overburdened | 4 (2.8) | n/a |
*aone former caregiver is still caring for a person with PD who is living in a residential home. Therefore she considers herself a former caregiver; n/a not applicable.