Like any severe disease, Amyotrophic Lateral Sclerosis (ALS) has a significant effect on the life of the patient and relatives and the people caring for them. It is not unusual for people who have Amyotrophic Lateral Sclerosis to suffer from anxiety and depression as well as other emotional difficulties stemming from having Amyotrophic Lateral Sclerosis.
Prevalence Of Depression Among Patients Suffering from Amyotrophic Lateral Sclerosis
According to a study by Alessia Pizzimenti, PsyD, and co-authors, “The complications related to amyotrophic lateral sclerosis (ALS) include pain. A higher risk of depression and a negative effect on quality of life (QoL) might be expected in ALS patients with pain. […] Our study suggests that pain is frequent in ALS patients and that depressive symptoms are significantly related to poorer QoL. Clinicians should pay more attention to both pain and depressive symptoms in ALS patients considering their effect on QoL.”
Depression is not very common nor very strong among patients who have Amyotrophic Lateral Sclerosis. It is less common among people living with Amyotrophic Lateral Sclerosis compared to patients suffering from other diseases that are neurological such as MS. But when depression does exist in the person with ALS, it has a significant impact on the person’s life.
Generally, people feel depressed after they are informed that they have Amyotrophic Lateral Sclerosis. Depression is usually felt at the disease’s start rather than near the end of the disease. But many of them who have the condition typically have a positive outlook in life, including when the disease progresses.
There is no correlation between a patient’s feelings of depression and their religion, their finances, whether they have a significant other or not, and whether someone is caring for them or not. Also, there is no correlation with how severe the disease is. However, as the patient’s physical capabilities lessen their emotional well-being will also be adversely affected. There is also no correlation with patients who want a quicker or earlier death. The wish for a swift or early death may be due to lack of hope rather than feelings of depression.
Relatives of a person with Amyotrophic Lateral Sclerosis may also suffer from depression. And people caring for the patient are more likely to be depressed than the person who has ALS. At the start of a research study, one-tenth of the people caring for the patients were depressed. Several months later that number multiplied by two.
Warning Signs Of Depression
The depressed individual is usually the last one to recognize that they have depression. Signs of depression are typically slow to appear.
Allison Abrams, LCSW-R, wrote, “When someone is depressed, something as simple as taking a shower can seem like an arduous task, as can any social interaction. Often one’s view of themselves becomes so distorted that they may see the world and everyone in it as an adversary, including family and friends.”
Depressed individuals usually feel negative emotions such as guilt or lack of hope. They may stop enjoying activities that they would normally love to do. Focus is also an issue and they may not remember things as well as before. They may stop socializing. And they may even think of suicide.
The depressed person may sleep less, but there are rare cases of them sleeping more than usual. They may also eat less, leading them to lose weight, but there are also rare cases where they eat more and gain weight. They may complain of physical ailments like headaches. But they very seldom inform others that they are depressed.
Living with ALS is hard enough. It will change the way you move physically in an extreme way, and this can shake your entire world in an instant. Having both ALS and a mental health disorder like depression or anxiety will not make things easier. It will be harder.
But there is always help. According to Francesco Paganini, PhD, PsyD, and co-authors, “Psychologists can play an important role in ALS care, by providing clinical activities in every step of the disease, including support and counseling activities directed to patients, their caregivers and to physicians.”
For next week, more details about coping with depression if you have ALS and other related matters will be discussed.