Resilience among patients with amyotrophic lateral sclerosis (ALS) and their caregivers

Amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disorder, is the most common form of motor neuron disease in adults. People with ALS become severely disabled when the disease is progressing. The confrontation with constant losses, with dying and death poses enormous challenges both for them and for informal carers, who are most often spouses or close family members. However, there is evidence that the quality of life of ALS patients is often quite high and not correlated with the physical status. What does this mean for the quality of life of the caregivers? What are the sources of distress and what factors are helpful for the resilience of ALS patients and their families? Resilience is defined as the human ability to overcome crises using individual and social resources, and to use crises as inducement for personal growth. Worldwide longitudinal studies have shown that resilience is dependent on the interaction of various factors - to be found in the person, the family and the social environment. Surprisingly, for many ALS patients both the quality of life and their mental health are quite stable over time. However, for their caregivers it is a different picture: their quality of life and mental health deteriorate with increasing dependency of and help needed by the patient. The following factors have been identified as protective for ALS patients so far: active problem solving, autonomy, finding meaning in/despite the illness, spiritual/religious attitudes, altruism, the feeling of not being a burden for others, close and supportive family relationships and a functioning and stable social environment. For carers similar factors have been identified. Moreover, it appears to be extremely important for caregivers to receive sufficient information on the illness, its course - including the terminal phase - and on practical help options. Additionally, participation in support groups has been shown to be beneficial. How can the resilience of patients and their caregivers be boosted? First of all, the patient wants to be respected as a person. Therefore, breaking the news and providing information about the illness should be done honestly, stepwise and in an empathic way. In addition, patients and their families need information and advice with respect to legal issues, access to support and practical aid. Furthermore, support in coping and finding meaning may be helpful for their resilience. It is known that the caregivers play a central role for the patients' well-being; therefore, they should be part of the unit of care and should be involved in all decisions from the beginning. Although most needs seem to be overlapping for patients and carers, one has to be aware of the possibility of diverging needs, especially as the disease progresses and the burden of care increases. A single person will hardly be able to provide the complex care needed by ALS patients and their families. Ideally, and in line with the palliative care concept, a multi-professional team should adopt this task.