What kind of nursing care is necessary and available?
Due to the progressive motor deficits affecting the hands, arms, and trunk, ALS leads to a reduction in the ability to care for oneself and, consequently, to the need for nursing care. The timing and extent of the care required depend on the individual course of the disease.
Nursing care for ALS is a complex and extensive topic that goes beyond the scope of this guide and warrants a book of its own. In fact, the German Society for Muscular Diseases (DGM) has published an ALS handbook that addresses nursing and socio-medical issues.
In general, a distinction is made between different types of care: basic care (defined by law in Book XI of the Social Code) and medical care (Book V of the Social Code).
Basic care involves immediate personal care, nutrition, and mobility, as well as ensuring the ability to perform activities of daily living. The options for financial or in-kind support are governed by long-term care insurance.
This should be distinguished from therapeutic care, which includes medical nursing procedures (administering medication, changing dressings, caring for PEG tubes, mask ventilation, or invasive ventilation). Therapeutic care is covered by health insurance.
Applying for and receiving health or long-term care insurance benefits (SGB V or SGB XI) can be complex. In such cases, it is advisable to seek specialized long-term care counseling to ensure you receive the best possible support from existing health and social insurance systems.
In addition to counseling from self-help organizations, it is helpful to seek advisory and organizational support from municipal care resource centers and care counseling agencies. Care counseling services that are tailored to the specific care challenges associated with ALS are increasingly being integrated into care networks.
Care counseling agencies can (with funding from health insurance companies) visit those affected at home to better assess their specific care needs and assist them in being classified into the appropriate care levels (under long-term care insurance).
In addition to financial assistance from long-term care insurance, the long-term care counseling service also provides specialized care training for family members, friends, and other relatives who are responsible for caring for ALS patients.