Majority of amyotrophic lateral sclerosis patients are not depressed

[Wise Young]

http://i-newswire.com/pr36625.html

Majority of amyotrophic lateral sclerosis patients are not depressed

Contrary to what you might think, most people with amyotrophic lateral sclerosis (ALS) are not depressed. They are also not more likely to get depressed as the end of life approaches, and they are not more likely to be depressed if they want to die or hasten their own death. Two new studies, published in the July 12 issue of Neurology, the scientific journal of the American Academy of Neurology, provide the evidence to contradict these assumptions.

(I-Newswire) - The two studies involved the same group of 80 people with advanced ALS. To enter the study, participants had to have breathing difficulties with a forced vital capacity, or breathing power, of less than 50 percent of normal, which is related to a high likelihood of hospice admission and death or the need for mechanical ventilation within six months. The participants were assessed every month until death; 53 of the participants died during the study period.

The first study found that 57 percent of the participants were never depressed during the study period, and only eight percent were depressed at all visits. The researchers also found that people were not more likely to become depressed as death approached.

"It's remarkable that a majority of ALS patients have a more positive attitude toward life even as the inevitability of death is imminent," Catherine Lomen-Hoerth, MD, PhD, wrote with her colleague and mentor Richard K. Olney, MD, in an accompanying editorial. Olney was founder and director of the ALS Treatment and Research Center at the University of California-San Francisco before he was diagnosed with ALS in 2004 and turned over the reins to Lomen-Hoerth, his former student. The AAN presented Olney with a special Public Education Award for his efforts to raise awareness of the disease and money for research by sharing his story as a researcher/doctor turned patient with the national media.

"The resiliency of people with ALS is inspiring for all working in the field of ALS and helps remind us daily of our own mortality and the importance of living each day fully," Lomen-Hoerth wrote.

The researchers also looked at factors that could possibly increase or reduce the risk of depression, such as the patient's spiritual beliefs, whether a spouse was serving as the caregiver, and the patient's financial status. None of these factors made a person more or less likely to be depressed.

The second study examined whether patients expressed a wish to die, and whether people who were depressed were more likely to wish to die. Of the 53 patients, 23 thought about ending their life, 10 expressed that wish to others, and three people hastened their death. In these cases, caregivers reported that the patients asked for relief from suffering and continued to ask even after they were told by the hospice team that additional relief would have the secondary effect of reducing the strength of their breathing muscles and hastening their death.

Those who hastened their death were not different from those who did not hasten their death demographically or in their level of disability or access to services. They were not more likely to be more or less educated, live alone, older, or have more unmet needs or use fewer services than other patients. The two groups also did not differ in how burdened they thought their families were in providing care.

Those who expressed the wish to die or to hasten their death were not more likely to be depressed, if their answers to questions about feeling they "would be better off dead" were excluded. "These findings suggest that the desire to die in end-stage disease may not simply be due to depression," said study author Steven M. Albert, PhD, MSc, of Columbia University in New York, NY. "It may be due to a more general loss of meaning and purpose."

The study found that those who expressed the wish to die were less optimistic, took less comfort in religion, and felt more hopeless.

Compared to those who were unable to act on their wish to die, those who hastened their death reported less suffering and an increased perception of control over the disease in their final weeks of life.

Timothy E. Quill, MD, director of the Center for Palliative Care and Clinical Ethics at the University of Rochester Medical Center in Rochester, NY, and a national spokesman on end-of-life issues, wrote in an accompanying commentary, "In discussing feeding tubes and mechanical ventilation as end-of-life options, we have found that having a willingness to discuss stopping them once started allows some patients who fear chronic dependence to try these treatments in a way that keeps them in control of the process. Sometimes knowledge that there could be an escape allows some patients to keep going in circumstances they would otherwise feel trapped."

The second study was supported by a grant from the National Institute of Mental Health.

The American Academy of Neurology, an association of more than 18,000 neurologists and neuroscience professionals, is dedicated to improving patient care through education and research. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, epilepsy, multiple sclerosis, Parkinson's disease, and stroke.

American Academy of Neurology
http://www.aan.com/press

[Sue Pendleton]

The study found that those who expressed the wish to die were less optimistic, took less comfort in religion, and felt more hopeless.

First, I find the above confusing. I assume feeling hopeless is a depressive emotion as is a pessimistic versus optimistic attitude. Or were those who expressed a wish to die considered depressed by the researchers?

Secondly, sorry for my absence from the forum. I was back in the Midwest (where rumor has it computers do not exist, ditto email) for my parents' 50th anniversary. And I was born a longgggggggggggggggg time after they got married. :-)

Many thanks to Wise for not only keeping watch over the forum but in immediately digging up recent information on different forms of ALS and like diseases. I recently received a request for information on the subject and I know very little about it at the moment. I am reading up though!

When I was first injured I wished I had cancer or some other disease where a fight was possible. Recovery from TM seems rather a game of chance and SCI, well, where is the waiting room? After hearing about the way this particular type of disease progresses I've been thinking of how one deals with this diagnosis. It's here that I find that you have two choices: head for totally hopeless and depressed or, as Tim Magraw sings, "someday I hope you get the chance to live as though you were dying. As if tomorrow was a gift. What would you do with it?" As long as the physical and mental abilities are there I would be doing some serious living. And after that? Maybe pass on to all I know that love does not necessarily end with death, that words can heal as well as hurt and that each day, each moment is a one time thing. No do overs as Chris Reeve once said. So enjoy that catnap and stretch every muscle as you wake, cry when the world hurts, say "I love you" to each and everyone it applies to and on a regular basis in case they have a bad memory.

[bigbob]

I'm starting to understand your posts
Even when I couldn't I liked reading them for the challenge and graphic rhetoric

[Lindox]

I guess these types of studies are interesting to a point. Well especially if you don't have ALS..I would guess.

I tend to agree with one very straight speaking ALS victim..who was also a military hero.

"Save my ass. Don't kiss it."

[Wise Young]

Sue, the reason I posted this is because it is widely believed that depression is one of the manifestations of the disease of ALS. Although ALS is widely known as a lower motoneuronal degenerative disease, there is signficant loss of cortical neurons as well. It just so happens that the motoneuronal losses kill the patients before the other symptoms manifest. In this way, ALS may not be that different from Parkinson's disease, for example. In the year, there has been a slew of papers contradicting the long-held belief that depression is common in people with ALS. While there is cognitive impairment, it is not necessarily associated with depression.

Wise.

Ringholz GM, Appel SH, Bradshaw M, Cooke NA, Mosnik DM and Schulz PE (2005). Prevalence and patterns of cognitive impairment in sporadic ALS. Neurology 65: 586-90. OBJECTIVE: To investigate the prevalence and nature of cognitive changes associated with sporadic amyotrophic lateral sclerosis (ALS) using a large scale study. METHODS: Consecutive patients with sporadic ALS (n = 279) underwent comprehensive neurologic evaluation and neuropsychological testing. Testing data from normal controls (n = 129) were used for classification and comparison purposes. RESULTS: On non-motor, non-speed-dependent tasks, 51% of patients with ALS had evidence of cognitive impairment compared to 5% of controls. Cluster analysis suggested four patient subgroups: 49% intact, 32% with mild impairment, 13% with moderate impairment, and 6% with severe impairment. Forty-one patients (15%) met criteria for frontotemporal dementia (FTD). ALS patient subgroups, excluding the intact group, performed significantly lower on tests of executive function and memory than normal controls. Patients with more severe disease also had deficits in confrontation naming. Although memory function declined with increasing severity of overall cognitive impairment, only two patients had the severe memory loss typical of Alzheimer disease. Cognitive impairment was correlated with clinical measures of word-finding, phrase length, and motor programming. Cognitive impairment was not correlated with depression scores or severity or duration of motor or bulbar symptoms. Patients with bulbar vs limb-onset ALS were not different in either level of impairment or pattern of performance. CONCLUSIONS: These data confirm the presence of cognitive impairment in 50% of patients with ALS and particularly implicate executive dysfunction and mild memory decline in the disease process. More severe impairment occurs in a subset of patients with ALS and has features consistent with FTD. Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16116120

Kubler A, Winter S, Ludolph AC, Hautzinger M and Birbaumer N (2005). Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabil Neural Repair 19: 182-93. OBJECTIVES: The authors aimed at investigating the occurrence of depression and the level of quality of life in patients with amyotrophic lateral sclerosis (ALS), an incurable neurodegenerative disease leading to progressive motor paralysis. They further wished to elucidate correlates of depression and quality of life, such as physical impairment, time since diagnosis, age, sex, and education. Additionally, the authors attempted to confirm previous studies that had shown quality of life to be underestimated by partners or caregivers. METHODS: To assess severity of depressive symptoms, the authors used Beck's Depression Inventory (BDI) and the ALS-Depression Inventory. To assess the patients' quality of life, they used the Scales to Assess Quality of Life. The same questionnaire was presented to partners or caregivers to estimate the patients' quality of life. RESULTS: Severity of depressive symptoms was everything from not depressed to clinically relevant depressed. On average, quality of life was rated as satisfactory. Severity of depressive symptoms and quality of life showed a moderate positive relation to physical impairment and a weak negative relation to time since diagnosis. Partners or caregivers rated patients' quality of life significantly lower than did the patients. CONCLUSIONS: Although depression occurs among ALS patients, it is not inevitable. Patients can remain free of depression and maintain a good quality of life. Depression should be treated, and patients have to be provided with unbiased information, including their medical and palliative care options. Institute of Medical Psychology and Behavioural Neurobiology, University of Tubingen, Tubingen, Germany. andrea.kuebler@uni-tuebingen.de. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16093409

Albert SM, Rabkin JG, Del Bene ML, Tider T, O'Sullivan I, Rowland LP and Mitsumoto H (2005). Wish to die in end-stage ALS. Neurology 65: 68-74. BACKGROUND: In retrospective studies, estimates of hastened dying among seriously ill patients range from <2% in one national survey to as much as 20% in end-stage disease cohorts. OBJECTIVE: To examine, in prospective studies, dying patients in the months before death, in order to understand the wish to die. METHODS: Patients with advanced ALS with a high likelihood of death or need for tracheostomy within 6 months were identified. Patients were assessed monthly with an extensive psychosocial interview, including a diagnostic interview for depression. Family caregivers were interviewed on the same schedule and also after patient deaths. RESULTS: Eighty patients with ALS were enrolled, 63% of eligible patients; 53 died over follow-up. Ten (18.9%) of the 53 expressed the wish to die, and 3 (5.7%) hastened dying. Patients expressing the wish to die did not differ in sociodemographic features, ALS severity, or perceived burden of family caregivers. They were more likely to meet criteria for depression, but differences were smaller when suicidality was excluded from the depression interview. Patients who expressed the wish to die reported less optimism, less comfort in religion, and greater hopelessness. Compared with patients unable to act on the wish to die, patients who hastened dying reported reduction in suffering and increased perception of control over the disease in the final weeks of life. CONCLUSION: These findings suggest caution in concluding that the desire to hasten dying in end-stage disease is simply a feature of depression. The Eleanor and Lou Gehrig MDA/ALS Research Center, Department of Neurology, Columbia University, New York, NY 10032, USA. sma10@columbia.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16009887

Rabkin JG, Albert SM, Del Bene ML, O'Sullivan I, Tider T, Rowland LP and Mitsumoto H (2005). Prevalence of depressive disorders and change over time in late-stage ALS. Neurology 65: 62-7. OBJECTIVE: To determine the prevalence of depressive disorders and symptoms in patients with late-stage ALS, to identify possible risk and protective factors associated with depression, and to determine whether depression increases as death approaches. METHODS: Semistructured interviews were conducted monthly with hospice-eligible patients with ALS and caregivers until the study endpoints of death or tracheostomy. Standardized measures were administered to assess depressive disorders and symptoms, hopelessness, spiritual beliefs, attitudes toward hastened death, quality of life, and related constructs. RESULTS: Sixty-three percent of eligible patients were enrolled. Of the 80 participants, 17 were seen only once; the number of monthly assessments for the others ranged from 2 to 18. For the 53 patients who died, median interval between last assessment and death was 30 days. At study baseline, 81% had no depressive disorder, 10% had minor depression, and 9% had symptoms consistent with major depression. Diagnoses of depression were made on 16% of 369 monthly assessments. Fifty-seven percent of patients never had a depression diagnosis at any visit, and 8% were depressed at all visits. There was no trend toward increasing depression as death approached. Presumed protective factors including spiritual beliefs, spouse as care partner, financial situation, depression in caregiver, and hospice participation did not distinguish between those who were depressed and those who were not. CONCLUSIONS: Results of multiple measures of depression and distress converged to indicate that major depression in people with late-stage ALS is rare, although transient depressive symptoms may occur, and depression does not generally increase as death approaches. New York State Psychiatric Institute, 1051 Riverside Dr., New York, NY 10032, USA. jgr1@Columbia.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16009886

Olney RK and Lomen-Hoerth C (2005). Exit strategies in ALS: an influence of depression or despair? Neurology 65: 9-10. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16009877

Lule D, Kurt A, Jurgens R, Kassubek J, Diekmann V, Kraft E, Neumann N, Ludolph AC, Birbaumer N and Anders S (2005). Emotional responding in amyotrophic lateral sclerosis. J Neurol Amyotrophic lateral sclerosis (ALS) is a fatal disease, leaving the patient in a partially or completely deafferented state. In an explorative study, we investigated responses to visual socio-emotional stimuli in ALS patients. Pictures from the International Affective Picture System (IAPS) were verbally judged by 12 moderately affected ALS patients with a spinal onset and a slow progression and 18 age-matched controls, and data were compared with psychophysiological responses. Verbal emotional judgments of patients were more positive than ratings of controls. Regarding arousal, patients neutralized extreme pictures, in that they rated calm pictures as more exciting than controls and exciting pictures as more calm. These changes of emotional processing were unrelated to depression or frontal lobe dysfunction. There were no major differences between patients and controls concerning physiological responses to emotional stimuli. We conclude that emotional responses of ALS patients tend to be altered towards positive valence and towards a more balanced arousal state in early stages of the disease. These findings contradict assumptions of a generally negative impact of the disease on the emotional disposition and may indicate compensatory cognitive or neuroplastic changes. University of Ulm, Dept. of Neurology, Oberer Eselsberg 45, 89081, Ulm, Germany, albert.ludolph@rku.de. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15977000

Chio A, Gauthier A, Calvo A, Ghiglione P and Mutani R (2005). Caregiver burden and patients' perception of being a burden in ALS. Neurology 64: 1780-2. The determinants of ALS caregiver burden and the feeling of the patients as being a burden were assessed using the Caregiver Burden Inventory and the Self-Perceived Burden Scale in 60 caregiver-patient couples. Caregiver burden was correlated to their level of depression and quality of life and, differently from other chronic disorders, increased with the worsening of patients' disability. ALS patients have a good objective perception of their impact on caregivers. Department of Neuroscience, University of Turin, Italy. achio@usa.net http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15911811

Paz-Rodriguez F, Andrade-Palos P and Llanos-Del Pilar AM (2005). [Emotional consequences of providing care to amyotrophic lateral sclerosis patients]. Rev Neurol 40: 459-64. INTRODUCTION AND AIMS: This study describes the emotional and personal consequences of providing care to amyotrophic lateral sclerosis (ALS) patients. SUBJECTS AND METHODS: Six caregivers aged from 23 to 67 years old (mean age: 38.2 +/- 15.6), weight interviewed. The Hospital Anxiety and Depression Scale (HAS) and the OARS Activities of Daily Living Questionnaire were applied. The subjects were interviewed with semi-structured questions about medical information, caregiver burden, coping, social support, impact on his/her health, stressor and religious resources. In order to be included in the research, the subject had to be an ALS patient caregiver. Every interview was audio recorded and transcribed, and a content analysis was realized. RESULTS: They show emotions caused by unfavorable life conditions and were classified into seven main categories: 1) defenselessness, 2) negative affection, 3) hope, 4) sadness, 5) depression, 6) isolation and 7) loneliness. CONCLUSION: This study shows that providing care to ALS patient affects the familiar, social and emotional caregiver's system. Departamento de Grupos de Apoyo, Instituto Nacional de Neurologia y Neurocirugia, UNAM, Mexico DF, Mexico. franciscopazinnn@salud.gob.mx http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15861326

Hillemacher T, Grassel E, Tigges S, Bleich S, Neundorfer B, Kornhuber J and Hecht MJ (2004). Depression and bulbar involvement in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 5: 245-9. OBJECTIVE: Patients with amyotrophic lateral sclerosis (ALS) often develop depressive symptoms. Little is known of the factors that predict or influence depression in ALS patients. PATIENTS AND METHODS: In 41 ALS patients we compared a self-rating depression scale with the ALS Functional Rating Scale (ALS-FRS), duration of disease, age, sex, education and participation in a self-help group. RESULTS: There was no significant relation between the total ALS-FRS score and the self-rating depression scale. In contrast, we found a significant correlation between the swallowing (r=-0.453; P=0.003) and breathing (r=-0.333; P=0.033) items of the ALS-FRS and the depressive scale. Depressive symptoms were negatively correlated with the duration of the disease (r=-0.377; P=0.016); there was no influence of age or sex. CONCLUSION: We found no evidence for a direct association between the loss of physical ability in general and depression, but for a decrease of depressive symptoms in relation to the length of time since diagnosis. Therefore, depressive symptoms in ALS patients seem to occur mainly as a depressive reaction following the communication of the diagnosis. In addition, patients with bulbar and respiratory symptoms should carefully be screened for depressive symptoms. Department of Psychiatry and Psychotherapy, Centre of Neuromuscular Diseases, University of Erlangen-Nuremberg, Germany. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15799555