Amyotrophic Lateral Sclerosis Research Paper
Amyotrophic Lateral Sclerosis
Kasandra Cartwright
Angelina College Lufkin, Texas
Abstract
The purpose of this paper is to show how amyotrophic lateral sclerosis (ALS) psychologically and physically affect the human mind. Amyotrophic lateral sclerosis is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The psychological impact of the disease is huge, on both patients and caregivers.
Amyotrophic Lateral Sclerosis
“Amyotrophic lateral sclerosis (ALS) is a fatal neuromuscular disease characterized by progressive degeneration of upper and lower motor neurons, which are responsible for the transmission of information form the cerebral cortex to the skeletal muscles and production of voluntary movement of the upper and lower extremities. It is associated with progressive paralysis, loss of communicative ability and functional decline”, stated (Ozanne, Graneheim, & …show more content…
Strang, 2013). “ALS is also known as Motor Neuron Disease, it leads to weakness, spacisty, dysphagia, dysrhythmia and respiratory failure”, stated (Averill, Kasarskis, & Segerstrom).
Quality of Life
Quality of Life (QOL) is defined as “a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment,” printed (Pagnini, 2013). “QOL has been reported to be negatively correlated to suffering, a sense of burden, and hopelessness and positively related to social support; the reaction with physical functioning is still unclear of patients with ALS,” printed (Pagnini, 2013). “Because of the short period of time between diagnosis and the patient’s demise, few studies have investigated psychosocial variables over time in ALS patients. QOL has been studied longitudinally with caregivers showing increased depression and decreased QOL, while the patients QOL ratings stay the same despite disease progression,” printed (Montel, Albertini & Desnuelle, 2012). “Some new instruments have been developed to study QOL in the ALS population such as, The ALSAQ-40. It contains forty questions measuring five areas of health status: eating and drinking, communication, activities of daily living,” printed (Pagnini, 2013).
Caregivers
“Caregivers can be defined as people who live with a person with ALS and provide the patient “with the most care and assistance”,” printed (Pagnini, 2013) “Caregivers are usually the patient’s relatives: spouses, partners, children, or siblings.
The fatal nature of the illness affects the whole family, with a significant emotional impact,” printed (Pagnini, 2013). “Caregivers spend a lot of time in everyday caring, sometimes more than 11 hours a day, and they often need to reduce their work activities or even completely end them. Those who believe they cannot leave the patient are the most distressed,” printed (Pagnini, 2013). “Together with emotional strain, care in ALS requires a certain amount of physical impairments. This is particularly true for patients with ALS. The progressive nature of the decease promotes the dependence of the patient on a primary caregiver, and it is important to identify factors relevant to quality of life for both the patient and the caregiver and to improve these as much as possible.” printed (Pagnini,
2013).
Conclusion
The psychological issue in ALS has explored quality of life, depression, and other psychological responses to the ALS.
References
Averill, A. J., Kasarskis, E. J., & Segerstrom, S. C. (2013). Expressive disclosure to improve well-being in patients with amyotrophic lateral sclerosis: A randomized, controlled trial. Psychology & Health, 28(6), 707-713. doi:10.1080/08870446.2012.754891
Ozanne, A. O., Graneheim, U. H., & Strang, S. (2013). Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients. Journal of Clinical Nursing, 22(15/16), 2141-2149. doi:10.1111/jocn.12071
Montel, S., Albertini, L., Desnuelle, C., & Spitz, E. (2012). Evolution of quality of life mental health and coping strategies in amyotrophic lateral sclerosis: a pilot study. Journal of Palliative Medicine, 15(11), 1181-1184. doi:10.1089/jpm.2012.0162
Pagnini, F. (2013). Psychological well-being and quality of life in amyotrophic lateral sclerosis: a review. International Journal of Psychology, 48(3), 194-205. doi:10.1080/00207594.2012.691977
Kasandra Cartwright
Angelina College Lufkin, Texas
Abstract
The purpose of this paper is to show how amyotrophic lateral sclerosis (ALS) psychologically and physically affect the human mind. Amyotrophic lateral sclerosis is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The psychological impact of the disease is huge, on both patients and caregivers.
Amyotrophic Lateral Sclerosis
“Amyotrophic lateral sclerosis (ALS) is a fatal neuromuscular disease characterized by progressive degeneration of upper and lower motor neurons, which are responsible for the transmission of information form the cerebral cortex to the skeletal muscles and production of voluntary movement of the upper and lower extremities. It is associated with progressive paralysis, loss of communicative ability and functional decline”, stated (Ozanne, Graneheim, & …show more content…
Strang, 2013). “ALS is also known as Motor Neuron Disease, it leads to weakness, spacisty, dysphagia, dysrhythmia and respiratory failure”, stated (Averill, Kasarskis, & Segerstrom).
Quality of Life
Quality of Life (QOL) is defined as “a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment,” printed (Pagnini, 2013). “QOL has been reported to be negatively correlated to suffering, a sense of burden, and hopelessness and positively related to social support; the reaction with physical functioning is still unclear of patients with ALS,” printed (Pagnini, 2013). “Because of the short period of time between diagnosis and the patient’s demise, few studies have investigated psychosocial variables over time in ALS patients. QOL has been studied longitudinally with caregivers showing increased depression and decreased QOL, while the patients QOL ratings stay the same despite disease progression,” printed (Montel, Albertini & Desnuelle, 2012). “Some new instruments have been developed to study QOL in the ALS population such as, The ALSAQ-40. It contains forty questions measuring five areas of health status: eating and drinking, communication, activities of daily living,” printed (Pagnini, 2013).
Caregivers
“Caregivers can be defined as people who live with a person with ALS and provide the patient “with the most care and assistance”,” printed (Pagnini, 2013) “Caregivers are usually the patient’s relatives: spouses, partners, children, or siblings.
The fatal nature of the illness affects the whole family, with a significant emotional impact,” printed (Pagnini, 2013). “Caregivers spend a lot of time in everyday caring, sometimes more than 11 hours a day, and they often need to reduce their work activities or even completely end them. Those who believe they cannot leave the patient are the most distressed,” printed (Pagnini, 2013). “Together with emotional strain, care in ALS requires a certain amount of physical impairments. This is particularly true for patients with ALS. The progressive nature of the decease promotes the dependence of the patient on a primary caregiver, and it is important to identify factors relevant to quality of life for both the patient and the caregiver and to improve these as much as possible.” printed (Pagnini,
2013).
Conclusion
The psychological issue in ALS has explored quality of life, depression, and other psychological responses to the ALS.
References
Averill, A. J., Kasarskis, E. J., & Segerstrom, S. C. (2013). Expressive disclosure to improve well-being in patients with amyotrophic lateral sclerosis: A randomized, controlled trial. Psychology & Health, 28(6), 707-713. doi:10.1080/08870446.2012.754891
Ozanne, A. O., Graneheim, U. H., & Strang, S. (2013). Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients. Journal of Clinical Nursing, 22(15/16), 2141-2149. doi:10.1111/jocn.12071
Montel, S., Albertini, L., Desnuelle, C., & Spitz, E. (2012). Evolution of quality of life mental health and coping strategies in amyotrophic lateral sclerosis: a pilot study. Journal of Palliative Medicine, 15(11), 1181-1184. doi:10.1089/jpm.2012.0162
Pagnini, F. (2013). Psychological well-being and quality of life in amyotrophic lateral sclerosis: a review. International Journal of Psychology, 48(3), 194-205. doi:10.1080/00207594.2012.691977