ALS Disease Psychological Aspects
This paper explores the psychological profile of patients with Amyotrophic lateral sclerosis (ALS). Aside from the physical challenges experienced by patients, they also have to endure psychological changes such as depression and denial. There are several factors that may contribute to the psychosocial profile of a patient such as degree of severity, age, onset of disease, time span, and dependence on machines like respirator.
This paper examines the psychological features of ALS patients and how it affects the family and support team. Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s disease is a progressive degenerative disease attacking the brain and spinal cord. The destruction of the nerve cells, called neurons, in the body’s upper and lower motor neurons leads to the inability of the voluntary muscles to function normally (National Institute of Neurological Disorders and Stroke, 2008).
With the death of the muscles, ALS patients will have impaired use of their arms and legs. Loss of control is the trademark of ALS. As the disease progresses, the patient will have trouble accomplishing day-to-day activities like eating, tooth brushing and putting on clothes (Olney, 2005, p. 8). Furthermore, the patient’s breathing will suffer and in the end, a ventilator will be needed (2005). Although the disease is debilitating, it does not impinge on the patient’s senses- sight, taste, and smell, hear and touch (2008).
There are three diagnostic factors in ALS: clinical features such as “weakness and involuntary muscle contractions”, having positive results of electromyography (EMG), MRI and blood tests) and ruling out other disorders (Amyotrophic Lateral Sclerosis Society of Canada, n. d. p. 1). Not only is the etiology of ALS unknown but there is also no cure for it, which makes the disease more frustrating. The drugs and treatments currently available are targeted only to mitigate ALS symptoms.
Given the complexity of the disease, it is not surprising to find that ALS-afflicted patients endure physical symptoms as well as cognitive and behavioral changes like memory and speech problems and emotional distress (Levine, n. d. ). Another study reports the onset of depression and denial in ALS patients (Houpt, Gould, and Norris, 1977). Given the grim prognosis that accompanies the disease, there are ALS cases when the patient undergoes severe psychological/ social/ spiritual distress. After all, ALS is a “life-changing event for an individual and his/her loved ones” (Ciechoski, 2002, p. 9).
Typically an individual facing the end of life undergoes what psychiatrist Elisabeth Kubler-Ross the five stages of dying: denial, anger, bargaining, depression and acceptance (Morris and Maisto, 2002, p. 437). The same phases may also apply in patients with ALS (Ciechoski, 2002, p. 12). In an ALS Patient Profile project, it was found that ALS patients experience greater bouts with depression- 60% compared to the 16 -20% exhibited by the normal and fit population (McDonald, 1992). This can be construed as a sign that the ALS patient is overwhelmed with sadness, apathy and feelings of worthlessness.
Depression, after all, is a normal reaction in individuals diagnosed with a life-threatening disease (Ciechoski, 2002, p. 15). Another study concurs with finding, adding that aside from depression; ALS patients are also more to go through denial as a response pattern (Houpt, Gould, and Norris, 1977). Denial, as Kubler-Ross suggests, is the first in a sequence people undertake as they await death. It means that the individual refuses to accept the diagnosis and swears that everything is all right. The study conducted by Drs. Houpt, Gould, and Norris reports that 22.
5 percent of ALS patients are “major deniers” (1977). Again, this is something common to an individual coping with changes. For example, an ALS patient may refrain using a wheelchair even though he/she is clearly demonstrating difficulty being mobile. It may take some time before the patient finally accepts the situation and resorts to using a wheelchair. However, this does denote giving up or succumbing to the disease but merely a sign that the patient is looking after his/ her well-being. In doing so, the patient will have a “sense of control” (p. 17).
Yet, another research shows that ALS-afflicted patients suffer from behavioral instability- displaying polarity in emotions, from being overly reactive and exaggerated to being extremely reticent and dull (Levine, n. d. ). There is also an increased chance of the patient becoming withdrawn, becoming less interactive and shying away from interaction with others, as well as professing “lack of insight” (n. d. ). Likewise, the patient may start having troubles making decision. Decision making in a serious ailment such as ALS is crucial, thus is requires a great amount of “flexibility and creativity” (Ciechoski, 2002, p.
18). Among the issues that need to be addressed by the patient are living accommodations, employing caregiver services, use of ventilator and feeding tube, family and work life, and even the subject of creating a living will (p. 21). Decision making should be consulted with the family, medical and support group but ultimately it must be stressed that it is the patient that makes the final decision (p. 22). Despite the torrents of emotions experienced by the patient, it is not suffice to conclude that ALS patients have a predictable psychosocial profile.
There have been studies indicating that some ALS patients only go through mild depression or none at all (McDonald, 1992). There are several factors that contribute to the psychosocial profile of an ALS patient- the onset of the disease, age of acquisition, seriousness of ALS, extent of the disease, reliance on respirator and other medical machines, and rate of deterioration (1992). It was found that the onset of the symptoms do no factor in the patient’s psychosocial status (1992). It will also be a factor when there are unresolved issues on the patient’s part prior to diagnosis.
On the other hand, age contributes to the patient’s well-being. ALS patients that are diagnosed during late adulthood (over 65 years old) tend to be more depressed and hopeless than those diagnosed in their younger years (1992). While ALS may not primarily be the root of depression, if one is to follow Kubler-Ross’ stages of dying, depression is a normal reaction when the subject of end-of-life id talked. An ALS diagnosis will only aggravate the fear. In addition, when a patient exhibits an acute presentation of ALS, the probability of it affecting the individual’s psychosocial status intensifies.
The same assumption, on the other hand, does not apply to the length of ALS. When one is faced with ALS, the prognosis is grim, giving the patient a time life of 3-5 years (1992). However, current data shows that there are ALS patients, roughly 18-42%, outliving the five year mark (1992). Thus, it can be deduced that it is not age but the patient’s will and family support that help him/her uplift his/her psychosocial welfare. When an ALS patient suffers rapid deterioration, his/ her psychosocial profile is also affected.
Furthermore, it was found that the longer the patient has been diagnosed with ALS, the more distressed he/she can be (1992). The same is applied to patients whose symptoms have worsened, thus have the need to rely on respirators and other machines. Such individuals may feel more helpless, affecting their attitudes and behaviors. As with any illness, ALS affects relationships- between spouses, siblings, children, friends, family, colleagues and other support system. Family, especially first-degree members are inclined to report periods of depression and denial (McDonald, 1992).
One study reports that an astounding 47% of spouses experience stress during an ALS diagnosis (1992). An ALS diagnosis changes the role play in a family, sometimes the wife become the breadwinner or the children take on the role of main caretaker, depending on who gets ill. Aside from family, the patients’ relationship with friends and work colleagues may also suffer, depending on the degree of closeness experienced. Furthermore, the patient’s relationship with the health care professional is important. The better the line of communication between the patient and the health care team, the better outcome there will be.
The health care professional may help the patient deal with depression by prescribing medication and counselling, whichever is appropriate. The psychological characteristics of ALS patients vary in patients. Some may be depressed while others may be hopeful. Coping with a difficult illness like ALS is difficult not only for the patient but the family and support group as well. Worsening of symptoms may hinder their psychological well-being. Thus, it is important for everybody concerned to remember that ALS is a disease not to be battled alone.
With help and support from everyone involved, patients will be able to live full lives. References Amyotrophic Lateral Sclerosis Society of Canada. (n. d. ). A guide to all ALS patient care for primary care physicians [PDF file]. Retrieved Mary 12, 2009 from Amyotrophic Lateral Sclerosis Society of Canada Website: http://www. als. ca Ciechoski, M. (2002). Coping with change [PDF file]. Retrieved May 12, 2009 from The ALS Association Website: http://www. alsa. org/files/cms/Resources/ALS_manual2. pdf. Houpt, J. , Gould, B. and Norris, F. (1977). Psychological characteristics of patients with
amyotrophic lateral sclerosis (ALS) [PDF file]. Retrieved May 12, 2009 from Psychosomatic Medicine Website: http://www. psychosomaticmedicine. org. Levine, S. W. (n. d. ). Neurocognitive, behavioral and psychological changes associated with ALS [PDF file]. Retrieved May 12, 2009 from ALS Connection Website: http://www. alsconnection. com/Neurocognitive_Testing_vers_2. pdf McDonald, E. (1992). Psychological aspects of ALS patients and their primary caregivers. Retrieved May 12, 2009 from American Holistic Health Association Website: http://www. ahha. org/articles/McDonald2.
htm Morris, C. and Maisto, A. (2002). Psychology an introduction 11th ed. New Jersey: Prentice Hall. National Institute of Neurological Disorders and Stroke (2008). NINDS amyotrophic lateral sclerosis information page. Retrieved May 12, 2009 from National Institute of Neurological Disorders and Stroke Website: http://www. ninds. nih. gov/ Olney, A. (2005). Daily activities made easier for people with amyotrophic lateral sclerosis [PDF file]. Retrieved May 12, 2009 from The ALS Association Website: http://www. alsa. org/files/cms/Resources/OT_Manual_2006. pdf.