Alpha-1 and the psyche: Challenges and coping strategies

Dr. Paul Köbler, as published in Alpha1 Journal 1/2024.

Studies concerning the topic of Alpha-1 and the psyche describe that

• Due to lower resilience, there is a need to deal with the limitations in everyday life.
• The unpredictable course of the illness can lead to anxieties about the future.
• Financial problems due to limited performance are possible.
• The long and arduous journey to a frequently late diagnosis can be exhausting.
• Concerns about genetic transmission exist. Almost all chronic illnesses have a negative impact on quality of life. However, this relationship is not linearly related to the severity of the illness, but rather mediated by the psychological burden. Thus, it is not necessarily the case that a serious illness must directly lead to a lower quality of life. The crucial factor is the psychological reaction, that is, how the illness is dealt with.

For dealing with those affected and for therapy options, this means that mental illnesses must be considered, monitored, and treated, as the impact of psychological stress can be very high. Therefore, it is particularly important for therapists to take mental illnesses seriously. The most common mental illnesses are affective disorders, especially depression, and anxiety disorders.

When is someone diagnosed with depression?

If a phase lasting at least two weeks with

• intense depressed mood, negative thinking, loss of joy
• Depression is characterized by a marked loss of interest, severe loss of motivation, and exhaustion, with at least two of these three criteria being met. Further symptoms that exacerbate depression include low self-esteem, feelings of guilt, sleep or appetite problems, negative rumination, and weariness of life.

When is someone considered to have an anxiety disorder?

• An exaggerated fear response in a situation that is already frightening.
• Unfounded fear of situations that would not frighten most others, often characterized by physical reactions such as rapid heartbeat, shortness of breath, trembling, sweating.
• Often very restrictive in everyday life due to avoidance behavior and intensive preoccupation with fears.
• Common forms of anxiety disorders: panic attacks, phobias, generalized anxiety.

Avoiding anxiety-provoking situations can create a vicious cycle. The more often you ignore them, the more likely anxiety disorders are to become chronic.

Both mental illnesses (depression and anxiety disorders) have a significant impact on physical health. In addition to reduced quality of life, studies show that anxiety disorders and depression contribute to more frequent and longer hospital stays and a poorer prognosis.

Studies have shown that people with manifest mental health problems often have difficulty adhering to therapy, exhibit less healthy behaviors and lower activity levels, and receive less social support. Furthermore, there are hypotheses that possible biological processes such as inflammatory responses, overstimulation of the stress axis, and autonomic dysregulation (e.g., reduced heart rate variability) may be exacerbated.

Several studies of lung patients show that there are three key pillars for supporting mental health. The first is patient education, which can significantly reduce anxiety and depression. Continuing education is a crucial component of coping with illness and has been proven to have an antidepressant effect.
The second pillar is psychotherapy, in which, for example, gradual activity is combined with relaxation exercises during rest periods, with the aim of, for example, "unlearning" fears.

Specific breathing and mindfulness training, as well as forms of movement, constitute the demonstrably helpful third major pillar. Here, performance and quality of life can be improved, and anxiety and depression reduced.
It is well known that good results are achieved during rehabilitation stays in which the three pillars are combined and trained.

Psychosomatic interactions in lung diseases

The word 'psychosomatic' is composed of the terms soul and body and affects every human being, because we are all in psychosomatic interactions, such as fear making our heart beat faster.

In psychosomatic medicine, one always deals with interactions. Using the Breathing-Thinking-Functioning model, developed in Cambridge, UK, in 2017, various interactions regarding breathing and shortness of breath are described in the form of several vicious cycles. The first vicious cycle is the physical process of breathing itself, because when we experience shortness of breath, we intuitively tend towards inefficient, rapid, and hyperventilating breathing. This leads us to fall into increasingly inefficient breathing patterns that quickly exhaust us. Helpful measures here include breathing techniques, training of the respiratory muscles, as well as handheld fans to calm breathing on a sensory level, or even non-invasive ventilation.

The second vicious cycle, which exacerbates shortness of breath, is described psychologically, as it addresses the focus on the symptom, which often intensifies it and, in combination with catastrophic thoughts, can trigger anxiety and even panic attacks. Currently, cognitive behavioral therapy, with its three pillars already described, offers the strongest evidence for treating this interaction.

The third vicious cycle concerns functional activity, because when we experience shortness of breath, we may become increasingly hesitant to be active and exert ourselves. This can lead to muscle atrophy, which, due to increasing immobility, in turn leads to a greater need for assistance. Supportive measures here can include pulmonary rehabilitation, pacing (gradually approaching the exertion limit), or walking aids to support mobility and activity.

How can one deal with stressful issues?

The speaker conducted a survey on quality of life and mental health in various pulmonary wards, interviewing 62 patients with advanced COPD. The patients completed screening questionnaires on psychological distress and quality of life, as well as the Freiburg Questionnaire on coping with the illness. In addition, they were asked two open-ended questions in an interview about their individual burdens and how they dealt with the disease.

The study revealed that despite the serious illness, one-third (20 patients) reported a good quality of life and no psychological symptoms. The much larger group of 42 patients felt significantly burdened by the illness. A comparison of the two groups showed that the burdened group exhibited significantly higher scores in the categories of 'depressive coping' and 'trivialization and wishful thinking'. This group described themselves as more prone to letting themselves go, lacking a positive outlook, and predominantly focused on their limitations. At the same time, they tended to downplay the illness to avoid confronting it.

The positively minded third displayed a more grateful attitude. Instead of thinking, "Nothing works anymore," these patients tended to focus on, "What else is possible?" In this way, they contributed to actively coping, were generally more stress-resistant, more positive, and more motivated to make the best of their respective situations.

It was striking that not a single one of the psychologically stable patients reported experiencing distress due to social reasons. This includes feeling alone and isolated, being stigmatized, or being a burden to others. In contrast, a quarter of those experiencing psychological distress reported, for example, finding the nasal tube disturbing or living almost unreachable, as if in a bubble.

The role of family members

What role do family members play in coping with the illness? How high is their stress and burden? It is important to recognize that those affected and their families stand together as a team, because family members are always affected by the chronic illness. Loss of flexibility and opportunities in professional and social life, financial difficulties, loneliness, and reduced participation can trigger the same worries and fears in family members and thus have serious psychological consequences. Furthermore, feelings of guilt and anxiety for future generations can make life even more difficult.

A shared and proactive approach to coping with illness can be the path to a significantly improved quality of life. Actively and consciously managing the illness, as well as mobilizing social and emotional resources, is helpful. People who feel a sense of belonging and value, who seek information and exchange experiences with one another, and who learn to manage their problems with the help of psychotherapeutic interventions, can actively contribute to their own psychological stability and experience a higher quality of life. It's a goal worth striving for.

Summary: Gabi Niethammer