The aging process of the world’s population is increasing diseases such as Alzheimer’s, a neurodegenerative disease that progresses into the loss of cognitive and motor functions, leading the patient to need constant medical assistance from many parts. During the present times, many debates over prevention, causes, and scientific research looking for a possible “cure” are held. With all the talk over the patient, most of the time, the caregiver seems to be forgotten. Forgotten with a most of the time silent burden, of mental and physical exhaustion, and many doubts over the future.
Due to the high intensity of the routine as a caregiver for such patients, levels of stress may rise and lead to physical and mental exhaustion, especially with the feeling of guilt. Brazilian psychologist, Juliana Meleu, describes which type of care is needed with such important people:
“It is often reported that family members and caregivers of people with Alzheimer’s disease experience a sense of guilt and self-criticism in the sense of not having noticed the early signs shown by the patient or not having insisted on preventive habits. This feeling, when persistent, can trigger physiological changes, such as elevated cortisol levels and increased risk of developing depressive and anxiety disorders, as evidenced in studies on chronic stress in caregivers”, explains.
“In this context, it is recommended that the caregiver and/or family member conduct an assessment with a psychologist or psychiatrist to define the best strategies to mitigate emotional distress and promote psychological resilience”, shares Mely. “Strategies may include mapping thought patterns that arise automatically but do not accurately reflect reality, biased ways of interpreting reality that lead to untrue conclusions, Psychoeducation to increase knowledge about the health conditions of both the caregiver and the patient, and self-care practices.”
Many researchers discuss the sociopolitical side of these situations: most caregivers are women, from the patient’s own family, who are also responsible for household chores and, many times, also money providers. These data clarify how women are still classified as responsible for any type of care for every member of their family, neglecting their own well-being for others, while no one else would do it for them. It is estimated that at least 70 hours a week are dedicated to the care of the patient in question.
As said, the routine of a caregiver can be extremely busy. Therefore, the risks of a Burnout crisis are extremely elevated. We asked the psychologist for some examples of how to identify early signs of Burnout and how to avoid it: “In the context of caring for people diagnosed with Alzheimer’s disease, especially when performed by family members, it is common that the multiple demands compromise the time that would be devoted to rest and self-care of the caregiver. This overload can precipitate physical and emotional exhaustion, raising the risk of developing burnout, characterized by chronic fatigue, depersonalization, and reduction of personal fulfillment”, said Meleu.
“To avoid it, it is recommended that management of the workload, insertion of breaks for rest, delegation of tasks, weekly planning, proactive monitoring of early signs of burnout (such as irritability, excessive tiredness, and sleep alterations), and building healthy and sustainable habits, among other possible strategies. Maintaining these strategies also strengthens the capacity for empathy, which is essential to the patient’s quality of life.”
In this context, it’s possible to observe the importance of a network group not only for the patient but for the caregiver. Juliana proceeds to explain and give examples of how such a group can help:
“Since it is a progressive condition that gradually compromises the autonomy and identity of the affected person, the support network becomes essential in sharing both the practical responsibilities and the emotional weight of care. Either by offering emotional support so that the caregiver feels welcomed, or by promoting the participation of the caregiver in support groups where participants experience similar contexts, by dividing care tasks, or facilitating access to updated information about the disease, enabling more conscious decisions about treatment behaviors, the support network relieves the burden and preserves the mental health of the caregiver.”
Many people do not have a network group around all the time, but if they at least have one, it is important to also learn “tricks” for individual self-care: physical activity, affirmations, even yoga. Studies made at the Federal University of Rio de Janeiro proved how the ancient Indian tradition can help stabilize mental and physical well-being. Also, psychology teaches many actions that can be taken individually, working with your own self, to maintain mental health, Meleu explains:
“These practices are recognized by neuropsychology for the maintenance of emotional balance and promote positive changes in the brain and body. Among the benefits of regular practice are improving concentration, reducing the effects of prolonged stress, promoting relaxation, and reducing inflammation in the body. It is recommended to gradually insert the practices into the routine, which facilitates adherence. The use of apps that guide activities and track progress is a suggestion that can help the caregiver to realize the benefits over time.”
Many caregivers do not have access to a network group to help during these hard situations. Wrongly, many people tend to try giving advice or words of support, but not always are they positive. We asked Juliana what doesn´t have to be said, even with good intentions:
“Even if the intentions are empathic, when interacting with the caregiver or relatives of the affected person, caution is needed to avoid minimizing the complexity of Alzheimer’s disease, invalidating the report, or intensifying a possible sense of guilt. Comments like ‘I also live forgetting people’s names!’ can devalue the severity of symptoms. Likewise, questions such as ‘Does he still recognize you?’ or ‘Did no one notice this?’ can evoke guilt or discomfort. It is recommended, if at your disposal, that you actively contribute to the support network by being respectfully available to assist with specific tasks. By strengthening support, these attitudes become beneficial to the well-being of all involved.”
__________
The article above was edited by Isabelle Bignardi.
Did you like this type of content? Check Her Campus Cásper Líbero home page for more!