Investigation of the relationship between mindfulness levels, caregiver burden, quality of life of caregivers of amyotrophic lateral sclerosis patients (ALS)

Objective: Informal caregivers play an important role in the care process of amyotrophic lateral sclerosis (ALS), and caregivers have a burden of care due to the challenging nature of the disease. Within the scope of the research, the main purpose of the study is to evaluate the mindfulness levels and care burden of the elderly caregivers, especially the elderly caregivers, and to examine the relationship between the mindfulness levels of the individuals and the caregiver burden and quality of life. Method: 57 caregivers registered to the Antalya Branch of the ALS Association were interviewed. In the study, data were collected using the "Demographic Information Form", "Conscious Awareness Scale", "Caregiver Burden Scale", "Quality of Life Scale". SPSS Statistics Base v23 version of SPSS software was used in the analysis of the obtained data. The significance level was accepted as 0.05 in all analyzes. Results: 26.3% (15 people) of the caregivers participating in the research consist of people aged 60 and over. 66.7% of these people are women, 73% are primary school graduates, 86.6% are economically difficult, 60% have a chronic disease. The average point of mindfulness level of elderly caregivers is 62.5. The fact that the average score of the care burden level of the individuals is 46.2 indicates that they have an advanced care burden. A weak and negative relationship was found between the level of mindfulness and the level of caregiver burden of all caregivers participating in the study. Conclusion: With the developing technology, the gradual improvement of the management of ALS disease prolongs the life expectancy of patients and caregivers can spend many years with the patient. Thus, it is thought that the number of elderly caregivers will gradually increase. Mindfulness-based gerontological interventions and services can be developed and implemented, since it is thought that the decrease in the caregiver burden of caregivers may be related to the increase in the level of mindfulness. Key words: Amyotrophic lateral sclerosis (ALS), mindfulness, caregiver burden, informal elderly caregiver, older adult caregiver