Monitoring
Patients should be seen at 6- to 12-month intervals or more often as problems arise. Even if the visits are brief, the encounters are often useful for identifying caregiver fatigue or critical loss of function. At all stages of the illness the ability to intervene effectively in patients with behavior problems or depression should be made clear, particularly to caregivers, and the interview should encompass experiences of mood, energy, depressed thoughts, and suicidal ideation.[135] Visits in early Huntington disease typically focus on loss of employment and the ability to perform relatively complex home management tasks; with progression, visits focus on loss of driving and related adult responsibilities. A driving assessment by an independent assessor can be helpful in deciding whether driving remains safe. Late-stage Huntington disease visits tend to center on placement and feeding issues, followed by end-of-life management.[23] Typically, patients live about 20 years from time of diagnosis to time of death. Few patients or families opt for interventions that prolong life.
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