Alzheimer's was diagnosed as Maria Josefa more than a year ago and has since been treated by Maite, her daughter and sister Mentxu. She lives with her sister in Viana (Navarra) and every evening she is with Maite. Maite explains that he cares “a lot” because the resources are “scarce”: “To manage everything, great support is needed, both family and institutional.” They're invented names because they want to protect family intimacy.

A week after being diagnosed, the association of relatives of Afan Alzheimer's and other dementias in Navarra had to teach a course in Viana and decided to participate. They talked about the phases of Alzheimer's and her care, among other things. Since then, they have come to Afghanistan every month.

Before she knew she had Alzheimer's, Maite explains that they had some suspicion: “We saw that I didn’t have energy forever and it wasn’t always.” He adds that from the beginning it has been “very hard”: “The main concern is where the disease will take its mother, because she is slowly losing out. That’s why Afan’s people tell us that grief begins before death.” Besides the concern, they felt fear at the beginning: “We know the disease and we know where it is going, it never improves.”

Self-care tools

In Afán, the information about Alzheimer's and other dementias, the guidelines for the management of the disease, the techniques of communication with the affected person, the care of the caregiver and the psycho-emotional consequences that occur in the families work. Association psychologist Zuriñe Muzkize explained that it is “very important” to provide the primary caregiver with tools for self-care: “As a reference person for Alzheimer’s, they spend a lot of time and give up their lives.”

The purpose of these tools is to help prevent the overload of the primary caregiver: “There may be behavioral problems and their management is very difficult for the caregiver.” Muzkiza explains that it does not happen in all cases, but that responsibilities can be increased. “In our case, we initially had small difficulties, but then well,” Maite says.

Although there is usually a primary caregiver, in the case of Maria Josefa has two: her sister and daughter. “Don’t neglect your life, but you have your mother in mind all the time,” Maite said.

At first, Maria Josefa was with Mentxu in the mornings, but Maite decided to go to the service of the day center of the Viana Elderly Residence to carry out actions: “It’s all right, you see that energy has changed and helps.” But at first he had doubts, he spoke to Muzzi: “He told me he was going to be OK. As it is difficult to make such a decision, it helps another to give a small boost.”

However, it has had difficulties in moving to the day centre, as the beginning of the pandemic closed: “I started asking long ago that I knew that that moment was going to come.” So far they have had to go to the Estella day centre.