Major stressors facing patients with amyotrophic lateral sclerosis (ALS): a survey to identify their concerns and to compare with those of their caregivers

Abstract

Health care professionals should apply a holistic approach to treatment and care of patients with ALS. Families should be included in the process, and it should not be assumed that patients and caregivers will agree on all issues. Future research should focus on therapeutic interventions to help ALS patients and their families cope with the multiple stressors accompanying a catastrophic illness.

Depression and quality of life issues in patients with amyotrophic lateral sclerosis

“…An early opportunity to educate the family and patient on what lies ahead and applying a holistic approach to the care of the patient are important [32,Class II], and it has also been shown that issues of QOL, depression, and attitudes toward treatment options need to be periodically discussed with the patient and the caregiver [33,Class II]. It is especially important for the health care provider to recognize and understand that the needs and goals of both groups may be different.…”

Interdisciplinary palliative care, including massage, in treatment of amyotrophic lateral sclerosis

“…The autonomy of the patient may be affected by the wishes of the family. Since both the patient and the family members may have different views on treatment and quality of life, communication is extremely important (Trail et al, 2003(Trail et al, , 2004. The patient and the caregivers must both be educated in treatment options to limit disagreements (Trail et al, 2003).…”

“…The physiological effects of stress decrease the immune response for both the caregiver and the patients with ALS (Trail et al, 2004). In a number of studies, massage has been shown to decrease hormones that are associated with stress, anxiety, depression and pain (Field et al, 2007(Field et al, , 2005Lund et al, 2006).…”

“…The increased responsibility issues that the caregivers feel places stress on the caregivers and the patients and may have a psychosocial effect on the caregivers. The complex issues facing the patient and the caregivers have negative effects on the quality of life and possibly the caregivers' health (Trail et al, 2004).…”

“…Currently treatment for ALS is treating the symptoms, thus improving the quality of life for the ALS patient (Trail et al, 2004). The only FDA-approved treatment for ALS is Riluzole (Bruijn and Cudkowicz, 2006).…”