Thoughts on communication

Monika Tempel, scientific advisory board Alpha1 Germany e. V.

The second online seminar, "Alpha-1 and the Psyche," concludes with this witticism from George Bernard Shaw. In the video, which is primarily aimed at the families of Alpha-1s, the topic of communication plays a central role. And for good reason! For those with Alpha-1 personality disorder, so much depends on successful communication.

Communication: a challenging task for people with Alpha-1 disorder

It is by no means a given that communication between people will succeed. Communication is often so difficult because what is said, what is meant, and what is perceived do not match up.

In many cases, misunderstandings and their consequences can be avoided by observing some basic communication rules. The principles of active listening are generally well-known in this context.

• perceive what is said
• Reflect on, evaluate, and classify what was meant through feedback.
• only then react to what has been perceived (in words or deeds)

That sounds simple – but it's challenging!

For individuals with Alpha-1 dementia, the exchange of information is often stressful due to the burdens and needs associated with their illness. This experience of stress has two aspects:

• Communication takes place under stress.
• Communicating about stress (the experience of stress) is particularly sensitive.

Communication under stress

Alpha-1 caregivers primarily report on: acute stress situations and chronic stress situations.

Acute stress situations include episodes of shortness of breath and exacerbations (sudden worsening of symptoms in a chronic illness). These situations put the body and mind on high alert, creating uncertainty and anxiety. In these situations, decisive and clear communication is especially important.

Chronic stress situations include overload and excessive demands, as well as anxieties about the future and loss. These persistent stress experiences can also lead to physical and psychological symptoms, such as sleep disturbances, tension, exhaustion, and depression. Self-awareness and self-care are crucial in these situations.

The family member version of the online seminar „Alpha-1 and the Psyche“ uses several examples to show what appropriate reactions to acute and chronic stress can look like in detail.

Communication of stress

As already mentioned in the section on chronic stress, self-awareness is an important aspect of communicating stress (the experience of stress). Furthermore, the following communication principles are important:

• Pay attention to when and where the conversation takes place (i.e., catch the "right" moment, e.g., talk while walking).
• Sending "I" messages ("This is really important to me...")
• Actively ask for comprehensibility ("If it's still unclear to you: Should I explain again in a different way what's important to me?")

So far, it's clear: Communication within the patient-caregiver relationship is a central and challenging task. But it gets even more demanding.

The communication partners of Alpha-1 caregivers

In addition to the communication within the relationship between patient and caregiver, numerous other conversation partners are involved:

• Relatives nearby
• Relatives far away
• therapist

The majority of Alpha-1 support workers must find appropriate ways to communicate with all these people – in a wide variety of roles and situations. The following list of topics illustrates how complex this communication network is and which "nodes" hold it together.

To ensure that Alpha-1 support staff do not get tangled up in the many threads, but can use the communication network as a helpful tool for support, a few exemplary recommendations follow.

How do I talk about it, …

… when I feel alone with my burdens?

• Explain the problem you have.
• Tell the other person what specific help you need.
• Describe exactly how she can help.
• Explain how this will help you.

However, if this withdrawal persists despite important issues needing clarification, caregivers may need to cautiously reopen communication. This could be done, for example, as follows:

• „"I've noticed you're withdrawing. Would you mind telling me what's on your mind? ... When would be a good time for you to talk about it?"“
• „"There's something on my mind that I'd like to discuss with you... But I don't know when the best time for it is."“
• „"I sense that we are finding it difficult to talk to each other here and now. My suggestion: Let's choose a time and a specific place. Perhaps the conversation will then be easier for us..."“

… if I have a „bad conscience“?

Caregivers sometimes develop feelings of guilt when they cannot provide the level of care they expect of themselves. They may then secretly accuse themselves of being selfish or doing something wrong.

The following reflection questions are suitable for dealing with doubts and feelings of guilt:

• Do my self-reproaches change anything about the situation? Does the patient experience relief from my feelings of shame and guilt?
• Do my pangs of conscience bring any benefits to the patient – or do they burden me (e.g., through tension and restlessness) or our relationship (e.g., through suppressed anger)?
• Can I examine my own perceptions? Can I let go of my image as the "ideal caregiver" and choose a more palatable approach for everyone?

… when I feel ashamed because of certain thoughts and feelings?

This question also revolves around the ideal image of a "good" caregiver. For many, this includes the expectation of only showing positive feelings, always being balanced and strong, being considerate, and reacting in an exemplary manner. They believe that caregivers shouldn't even think, feel, or do anything unpleasant – so as not to worry or burden the patient, or because they fear harming them.

But what happens when this ideal image clashes with the caregiver's actual feelings, desires, and needs? Where do they put their fears, anger, longings, aversions, and other taboo subjects? A few suggestions offer examples of how caregivers can deal with these often unspoken experiences.