Alzheimer’s disease is a disease that you never live alone in first person. Due to its neurodegenerative and progressive nature, it requires constant adaptation not only from the patient who suffers from it, but also from their entire family and social environment. Although the medical orientation is … focuses on the memory loss and cognitive decline Associated with the accumulation of proteins such as beta-amyloid and tau, its collateral effects profoundly impact the figure of the primary caregiver, who assumes an incalculable emotional, physical and social burden.
As part of the ABC Cuidamos Contigo initiative and the collaboration with the General Council of Nurses, we spoke with Paloma Munoz Pedrazuelanurse of the Spanish Society of Neurological Nurses (Sedene), who emphasizes that the initial diagnosis is often accompanied, even for the patient himself, by symptoms of anxiety and depression when they perceive that “something is happening to them”.
But the impact quickly extends to the family, because all roles are modified, especially if diagnosed in young patients (before age 65) who have to leave their job and their social relationships are affected.
A constant duel
Sedene’s nurse explains that, as in any diagnosis of serious illness, at the beginning there is mourning with its respective phases. The key is to accept the disease and practice understanding its progressive stages. It is essential that the caregiverstay calm so that the patient considers you as a support”, especially in the first phases, and that stable routines are established, promoting autonomy as much as possible.
Muñoz Pedrazuela recalls that the most complicated part of this disease is precisely its evolution, since requires constant adaptation. “There are times when the patient has more autonomy and independence while maintaining their personality, and it is important to value this because we know that this will not be a permanent state.”
And the same thing happens with behavioral modifications. It is an illness that forces the family to make a permanent effort to try to preserve “the good of each stage and bring the best possible which is not so good“.
Take care of yourself to take care
In this context of continuous demand, the mental health of the caregiver takes on a particular meaning in the expression “take care of yourself to take care of yourself“, because it is “impossible to take good care of someone if you are not well”. However, the nurse admits that this is a very complicated situation, since the patient has more and more needs and the primary caregiver is usually not a priority.
His main recommendation is to find a good support network to turn to, and something essential: knowing how to ask for help. The key, according to Muñoz Pedrazuela, lies in “knowledge when are we overwhelmed and we have to go out for some fresh air or ask another person to take care of the patient for us”, sharing our concerns so as not to suffer from overload and to be able to manage the new realities.
The link that resists memory
The progression of the disease leads to times of great emotional ordeal for the family. One of the most complicated is the diagnosis, when the patient is aware of his illness; In this case, planning is crucial for the patient to maintain autonomy in their decisions, which is why in many cases advance directive documents are written early.
Other critical moments are behavioral alterations, when the family member is barely recognized, and the difficult time to consider institutionalization of the patient. In this regard, the nurse admits that it gives the family a “fatal” feeling, thinking you are abandoning a family member or that you have failed.
But perhaps the deepest fear is when the family member stops recognizing the caregiver. Muñoz Pedrazuela is categorical on this subject: “I believe that nothing prepares you for thisand there is no formula to make it not hurt either. ” However, it offers a message of comfort and hope, reminding caregivers that, “even though it is difficult, loss of recognition does not imply loss of linkand this is maintained until the end” if the emotional connection is maintained.
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