TABLE 1.
Demographic and clinical details of the sample.
| Characteristic | People with MND (n = 27) | Caregivers (n = 17) |
| Age | ||
| Mean (range) | 63.96 (48–92) | 54.47 (20–73) |
| Gender | ||
| Man | 14 | 5 |
| Woman | 13 | 12 |
| Ethnicity | ||
| White British/Irish/Other | 27 | 16 |
| Asian/Asian British | 0 | 1 |
| Relationship to person with MND | ||
| Spouse/partner | 11 | |
| Son/daughter | 5 | |
| Sibling | 1 | |
| Education | ||
| Up to GCSE or equivalent | 7 | 1 |
| A levels or equivalent | 5 | 2 |
| Graduate level | 9 | 10 |
| Postgraduate level | 6 | 4 |
| Diagnosis | ||
| ALS | 17 | |
| Primary lateral sclerosis | 3 | |
| Progressive bulbar palsy | 3 | |
| Progressive muscular atrophy | 2 | |
| Kennedy’s disease | 2 | |
| Time since diagnosis | ||
| Less than 1 year | 9 | 6 |
| 1–5 years | 8 | 6 |
| More than 5 years | 10 | 5 |
| Health status (ALSAQ-40)* Median (IQR) | ||
| Physical mobility | 45 (28.75) | |
| Activities of daily living/independence | 50 (28.75) | |
| Eating and drinking | 16.67 (45.83) | |
| Communication | 14.29 (71.43) | |
| Emotional functioning | 40 (27.50) | |
| Caregiver burden (Zarit burden interview) | ||
| No to mild burden (0–10) | 1 | |
| Mild to moderate burden (10–20) | 5 | |
| High burden (>20) | 11 | |
| Cognitive Impairment (self-reported) | 5 | 6 |
*ALSAQ 40: Scores on each subscale range from 0 to 100 with a higher score representing a greater degree of impairment.