A recent study has shown that there are psychological factors that play a major role in the burdens carried by people who take care of Amyotrophic Lateral Sclerosis (ALS) patients.
The study looked into caregivers of ALS patients by investigating their quality of life, service engagement and assessing caregiver burden and the patients’ survival rate. It has been noted with due concern by scientists and researchers that, a limited number of studies have looked into caregiver burden and its relation to ALS patients. An ALS diagnosis can be devastating to both the patient and the caregiver. Usually anger, denial, fear and sense of loss are reactions that are expected and there is a need to remain positive and focus on the treatment and management of the condition.
Caregiving is readily done out of love, devotion and commitment to the ALS patient and can provide a sense of contentment. It has been discovered that over time, caregiving exerts a heavy emotional burden and can negatively affect the caregiver’s well-being both psychologically and physically. This will interfere with their ability to keep extending care to the ALS patients. Over time, constant anxiety for the patient will lead to the caregiver failing to attend to their needs in resting, eating well and pursuing other personal goals.
The most prevalent form of caregiving is that given by family members. They are the ones who give care and attend to ALS patients’ needs day in day out. It involves personal care, assisting with movement from one point to another, house chores and also taking care of other family members in the home. Most caregivers often provide societal and financial contributions within the home that can bring on stress.
Caregivers are important in dealing with any given disease. They are responsible for:
A study in Ireland was undertaken to investigate and determine the extent to which patient factors attribute to the burden.
These are: aspects intrinsic to the caregiver, experience of the caregiver in handling burden, trajectory and level of healthcare influence, site of onset and severity of the disease. A subjective assessment of the burden and problems experienced in the process of providing care to ALS Patients would then be described in detail.
The caregivers were split into two groups, that is, 41 low-burdened caregivers and 43 high-burdened caregivers. The analysis did not show major disparity between the two groups in measurable factors such as distinct disease characteristics, onset of various forms of ALS, disease duration or patient survival. In a different light however, the study found differences in the levels of anxiety, distress, depression and quality of life of the two groups.
The findings from this study show that while ALS patient related measurable factors have minimal effect on caregiver burden, the psychological burden may play a vital role on the caregiver’s own well-being and life quality. Based on this results, researchers speculated that coping mechanisms, resilience, personality and support links are to be highly considered in the provision of protective factors catering for the low-burdened caregivers. The caregiving difficulties were revolving around managing the reality of ALS disease, emotional and psychosocial effects such as limitation in maintaining relationships due to time and financial hindrances.
Caregiving encompasses long hours of care, psychological distress and they take a toll on the quality of life of the caregiver. These factors are used in the prediction and assessment of caregiver burden.
It has been established that proper management of caregiver burdens calls for strategies geared towards anxiety reduction, resilience-based interventions and coping mechanisms. Understanding the components of the burden and challenges faced when caring for an ALS patient facilitates effective support to the caregiver and an opportunity to assess the burden impact on the care recipient. This will aid in enhancing the quality of life for both caregivers and ALS patients.
There has been need for caregivers to be provided with pointers on how to ease this burden and maintain great physical and psychological health. They include:
It is vital that the ALS patient and his or her caregiver obtain all information necessary to be in a position to support their needs. This will ease the caregiving burden and ensure financial, emotional, psychological and physical health are well-balanced. In order to prepare for unexpected changed in management and treatment of ALS patients, good communication should be enhanced with family, medical team, community members, support groups and social services to achieve the greatest possible quality of life. An ALS diagnosis is not indicative of doom and people are able to continue living happy lives and drawing strength from the wide support network surrounding them.
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Source: ALS News Today