Table 1.
Stages during the life of a Huntington's disease patient
| A. Preclinical stage | |
|---|---|
| A1. At-risk stage (50%), one affected parent | - Anxiousness for the future |
| - Uncertainty about carriership | |
| - Care for affected parent | |
| A2.Gene carrier, premanifest stage | - Certainty about carriership |
| - New position in the family | |
| - Renewed uncertainty about onset | |
| - Care for affected parent and own family | |
| A3. Transition phase | - Strong feelings about changes in cognition |
| - Changes in behaviour | |
| - Changes in motor activity | |
| - Uncertainty remains | |
| B. Clinical stage | |
| B1. Clinical stage I | - Presentation first symptoms: neurological, cognitive or psychiatric |
| - Chorea most prominent symptom | |
| - Independent in ADL | |
| - Burden for the family mainly psychological | |
| - Rare death, unless suicide | |
| B2 Clinical stage II | - Motor disturbance more generalised |
| - Physical dependence starts | |
| - Burden for family psychological and physical | |
| - Death by other cause, suicide, euthanasia | |
| B3. Clinical stage III | - Severe generalised motor disturbance |
| - Almost complete physical dependence | |
| - Patient completely dependent on care | |
| - Burden for family mainly physical | |
| - Death | |