{"id":673,"date":"2014-05-09T10:19:19","date_gmt":"2014-05-09T09:19:19","guid":{"rendered":"http:\/\/www.alpha1-deutschland.org\/?page_id=673"},"modified":"2024-11-28T10:58:00","modified_gmt":"2024-11-28T09:58:00","slug":"hilfe-fuer-angehoerige","status":"publish","type":"page","link":"https:\/\/alpha1-deutschland.org\/en\/hilfe-fuer-angehoerige","title":{"rendered":"Help for relatives"},"content":{"rendered":"
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Help for relatives<\/span><\/h1>\n<\/div>\n

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.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t

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A communication guide for Alpha-1 caregivers<\/span><\/h1>\n<\/div>\n<\/div>\n\n\n\n\n\t
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Communication Guidelines<\/a><\/h3>\n
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\u201e"Let's talk about Alpha 1" \u2013 An offer for relatives<\/span><\/h2>\n

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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

Saturday afternoon was the day: How would the offer \u201eLet\u2019s talk about Alpha 1\u201c be received?<\/p>\n

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.<\/p>\n<\/div>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t

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Contact phone for adults<\/h3>\n
For questions regarding AAT deficiency in adults, please contact:<\/div>\n<\/div>\n<\/div>\n

Marion Wilkens, Chairwoman
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Tel.: 06528-1329714
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Contact telephone for children\/young people<\/h3>\n
For questions regarding AAT deficiency in children and adolescents, please contact:<\/div>\n<\/div>\n<\/div>\n

Ms. Gabi Niethammer, Advisory Board Member<\/strong><\/p>\n

Tel.: 040 \u2013 78891320
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From A for shortness of breath to Z for future<\/span><\/h2>\n

The family members expressed questions and doubts, differing needs, and individual coping strategies. A few themes kept recurring:<\/p>\n