Table 2.
Characteristics of informal caregivers and people with PD
| Caregivers of people with PD (N = 504) | People with PD (N = 504) | |
|---|---|---|
| Age, mean + SD | 67.6 + 9.2 | 69.9 + 8.1 |
| Women, n (%) | 337 (66.9) | 183 (36.3) |
| Education, n (%) | ||
| Primary education | 15 (3.0) | 20 (4.0) |
| Secondary education | 139 (27.6) | 130 (25.9) |
| Higher education | 350 (69.4) | 352 (70.1) |
| Marital status, n (%) | ||
| Married | 446 (88.5) | 434 (86.1) |
| Living with partner | 41 (8.1) | 38 (7.5) |
| Divorced | 4 (0.8) | 3 (0.6) |
| Widow/widower | 1 (0.2) | 15 (3.0) |
| Single/unmarried | 8 (1.6) | 10 (2.0) |
| Working status, n (%) | ||
| Fulltime employment | 42 (8.33) | 14 (2.8) |
| Part-time employment | 64 (12.7) | 26 (5.2) |
| Self-employed | 34 (6.7) | 17 (3.4) |
| Unemployed | 14 (2.8) | 3 (0.6) |
| Retired | 332 (65.9) | 366 (72.6) |
| Incapacitated for work | 15 (3.0) | 71 (14.1) |
| Others | 122 (24.2) | 22 (4.4) |
| Relationship to people with PD, n (%) | ||
| Partner | 457 (90.7) | n/a |
| Child | 21 (4.2) | n/a |
| Sister or brother | 6 (1.2) | n/a |
| Friend | 8 (1.6) | n/a |
| Others | 12 (2.4) | n/a |
| Living situation, n (%) | ||
| Living on my own | 18 (3.6) | 32 (6.3) |
| Living with my partner | 437 (86.7) | 432 (85.7) |
| Living with my partner and children | 46 (9.1) | 36 (7.1) |
| Living in an institution, i.e. nursing home | – | 2 (0.4) |
| Living independently, but receive ambulatory support | n/a | 1 (0.2) |
| Years of caregiving, n (%) | ||
| Less than a year | 61 (12.4) | n/a |
| 1 to 5 years | 235 (47.9) | n/a |
| 5 to 10 years | 89 (18.1) | n/a |
| More than 10 years | 42 (8.6) | n/a |
| I do not provide care (yet) | 64 (13.0) | n/a |
| Caregiving involvement, n (%) | ||
| Day and night | 129 (25.6) | n/a |
| During the day | 146 (30.0) | n/a |
| 3 to 6 times per week | 12 (2.4) | n/a |
| 1 to 2 times per week | 19 (3.8) | n/a |
| Less than once per week | 32 (6.3) | n/a |
| Less than once per month | 52 (10.3) | n/a |
| Very variable | 114 (22.6) | n/a |
| Caregiver burden, mean + SD | 15.9 + 11.7 | n/a |
| Little or no burden (0–20) | 366 (72.6) | n/a |
| Mild to moderate burden (21–40) | 118 (23.4) | n/a |
| Moderate to severe burden (41–60) | 20 (4.0) | n/a |
| Severe burden (61–88) | – | n/a |
| Type of diagnosis, n (%) | ||
| Parkinson’s disease | n/a | 485 (96.2) |
| Atypical parkinsonism | n/a | 19 (3.8) |
| Time since diagnosis, mean + SD | n/a | 7.2 + 5.2 |
PD Parkinson’s Disease, n/a not applicable