Table 1.
Demographic characteristics of family carers and people living with MND (n = 75).
| Family carer | Frequency and %, M (SD) |
|---|---|
| Age (mean, SD) | 63.09 (10.46) |
| Gender (Female) | 49 (65.3%) |
| Relationship to PwMND | |
| Spouse/Partner | 67 (89.3%) |
| Parent | 3 (4%) |
| Child | 4 (5.4%) |
| Other | 1 (1.3%) |
| Living with PwMND (yes) | 71 (94.7%) |
| Months caring (mean, SD)* | 38.64 (44.08) |
| Country of Residence (frequency) | |
| UK | 70 (93.3%) |
| United States | 5 (6.7%) |
| Hours providing care per week | |
| <1–8 | 17 (22.6%) |
| 9–30 | 19 (25.4%) |
| 31–49 | 10 (13.3%) |
| 50–99 | 10 (13.3%) |
| 100 or more | 19 (25.4%) |
| People living with MND | Percentage or M (SD) |
| Age (mean, SD) | 64.70 (11.74) |
| Gender (Male) | 45 (60%) |
| Phenotype of MND* | |
| ALS | 37 (49.3%) |
| Progressive Bulbar Palsy | 9 (12%) |
| Progressive Muscular Atrophy | 7 (9.3%) |
| Primary Lateral Sclerosis | 8 (10.7%) |
| ALS-FTD | 2 (2.7%) |
| Don’t know | 11 (14.7%) |
| Months since diagnosis (mean, SD) | 45.08 (47.88) |
Note: *Missing data for months caring (n = 73/75), phenotype of MND (n = 74/75) and months since diagnosis (n = 73/75). Phenotypes of MND were reported by carers.