Even though there is now a specific therapy option and "alphas" can gain additional quality of life through appropriate lifestyle choices, there are sometimes moments when not only those affected reach their limits. Family members can also quickly feel overwhelmed and seek help.
Alpha 1 Germany is always open to experimentation. The "Let's talk about Alpha 1" experiment at the 2018 information day was a success. The valuable suggestions from the discussion on April 21, 2018, form the basis for new programs.
The survey conducted at the 2017 information day yielded a clear result: there is a strong desire for more attention to be paid to the families of Alpha patients. Usually, everything revolves around the patients. The burdens placed on caregivers in their daily lives and their contributions in critical situations are rarely acknowledged. And this is despite the fact that most patients identify their partners and families as their most important pillars of support.
Given this situation, what could be more logical than developing a support program for family caregivers? It should be "tailor-made" to meet the specific needs of these caregivers. Therefore, the first step is to gather the most pressing issues. This brainstorming session began with an informal discussion at the 2018 information day.
Saturday afternoon was the day: How would the offer „Let’s talk about Alpha 1“ be received?
The circle of chairs had to be expanded several times before the exchange could begin. Finally, 27 family members waited for the moderator's signal to start the discussion. A participant from Austria enthusiastically shared her experiences with a program for family caregivers. Alpha 1 Austria has been offering specialized seminars for caregivers for years. This immediately sparked a lively exchange of experiences and opinions.
Marion Wilkens, Chairwoman
Tel.: 06528-1329714
E-mail: marion.wilkens@alpha1-deutschland.org
Ms. Gabi Niethammer, Advisory Board Member
Tel.: 040 – 78891320
E-mail: gabi.niethammer@alpha1-deutschland.org
The family members expressed questions and doubts, differing needs, and individual coping strategies. A few themes kept recurring:
One topic didn't come up at this first meeting – but is certainly simmering in the background: love life.
The desire for special services for family members is consistently expressed. This need should be addressed promptly.
Responsibility and support, shared activities and interests, clear rules and agreements – finding topics that are important to family members isn't difficult. Developing "tailor-made" solutions for these is more challenging.
Therefore, you as a family member are welcome to take action here. The following ideas are available:
What appeals to you most? Which offer would you accept? Do you perhaps even have your own ideas and suggestions (4)?
I welcome any feedback. I would like to thank all participants in the "Let's talk about Alpha 1" discussion at the 2018 information day once again for the constructive exchange.
Yours sincerely, Monika Tempel
Scientific Advisory Board (Areas of illness management, mental health, relatives)
Evaluation of the questionnaire for relatives of an Alpha-1 patient during the members' meeting in Göttingen
At our members' meeting and information day on April 21st and 22nd, 2017 in Göttingen, we asked the relatives of our affected members to take a moment to answer a few questions about their own well-being. We would now like to present the feedback from the relatives and thank them for their participation. We received a total of 64 questionnaires back from you.
When we asked how their health as a family member had deteriorated, we very often received the response that their mental health was particularly under strain. We frequently read that high blood pressure and insomnia were consequences of the high demands of the job.
psychological stress.
One participant wrote a telling sentence in the comments section: "You can't get sick yourself." In response to our subsequent question about how we could support you as family members, we were pleased to read very often that we should continue exactly as we have been. But you, as family members, also asked for our informative support on topics such as oxygen supply in other European countries, choosing a doctor, or even palliative care.
In our last question, you, as a family member, were able to suggest lecture topics that you found particularly interesting. You made the following suggestions:
We found the frequently recurring suggestion to organize discussion groups/workshops with psychological support/moderation particularly interesting. This includes both discussion groups solely among family members and discussion groups with the affected person.
You can imagine yourself together with family members. Finally, we would like to take this opportunity to thank you for the positive "General Comments" at the end of our questionnaire. Words of appreciation for our journal, encouragement to "keep up the good work," and compliments on the organization and flow of our meetings, which were even described as familial and warm – this is what motivates us to always provide you with the best information and support.
