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From the Department of Psychiatry (J.G.R.), College of Physicians and Surgeons, Columbia University; New York State Psychiatric Institute (J.G.R., G.J.W.); and The Eleanor and Lou Gehrig MDA/ALS Center (M.D.), New York Presbyterian Hospital, New York, NY.
Address reprint requests to: Judith Rabkin, PhD, New York State Psychiatric Institute, No. 51, 1051 Riverside Drive, New York, NY 10032. Email: jgrl{at}Columbia.edu
OBJECTIVES: The objectives of this study were to assess the prevalence of depressive disorders and symptoms and their correlates in patients with amyotrophic lateral sclerosis (ALS) and caregiver spouses and to identify dimensions of resilience as well as distress.
METHODS: Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status.
RESULTS: Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient’s distress as well.
CONCLUSIONS: Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.
Key Words: amyotrophic lateralsclerosis • depression • assisted suicide • caregiver
Abbreviations: ALS = amyotrophic lateral sclerosis; ALSFRS = ALSFunctional Rating Scale; BDI = Beck Depression Inventory; BHS= Beck Hopelessness Scale; DSM-IV = Diagnostic andStatistical Manual of Mental Disorders, fourth edition; FVC = forced vital capacity; SAHD = Schedule of AttitudesToward Hastened Death; STAI = Spielberger Trait Anxiety Inventory; VAS = visual analog scale.
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