Table 1 Demographic data on the participants based on the dataset from the participant observations and interviews
Participants | (n = 12) | |
|---|---|---|
Gender | Male | 3 |
Female | 9 | |
Age | 18-25 | 1 |
39-50 | 3 | |
51-55 | 4 | |
56-67 | 4 | |
Relation | Married/partner | 11 |
Adult child of a PALS/Cis1 | 1 | |
Occupational status | Working | 7 |
Early retirement/retired | 4 | |
Studying | 1 | |
Years of ALS-trajectory | 0-2 | 4 |
2-4 | 2 | |
4-8 | 4 | |
8-12 | 1 | |
12-14 | 1 | |
ALS-FTD-Q score | 22-30 | 2 |
31-35 | 5 | |
36-40 | 1 | |
41-46 | 3 | |
47-55 | 1 | |
Urban | ≥ 80.000 | 1 |
Rural | ≤ 80.000 | 11 |