“Normally, it is a very severe blow for the family,” explains Teresa Díaz, director of the CAI-Afedaz center and its Social Services department. After the diagnosis, many families do not know what the next steps will be, how the disease will progress or what resources are available to them. “We hear about what Alzheimer’s is, but until you have someone who has it, you do not really know what the disease involves,” she acknowledges.
One of the first emotions is uncertainty. Families want to know what stage their loved one is in, what will happen next or whether they will go through all the stages they know about. But there is no single answer. Each person progresses differently, and support needs also change as Alzheimer’s advances.
WHEN A FAMILY MEMBER BECOMES A CAREGIVER
After the initial shock, a quieter transformation begins in many homes. Someone in the family starts taking care of appointments, medication, meals, safety at home and everyday assistance. “It completely changes your life. They become completely dependent on you, not only physically, in terms of care and healthcare, but emotionally as well,” Díaz explains.
The burden usually falls on one person. When the patient is older and lives with a partner, Afedaz’s director explains, it is normally the spouse who assumes much of the care. When the children take over, her experience is that daughters often play that role.
And caregiving ends up taking over almost everything. Eventually, the person may no longer be able to stay alone; doors, stoves and meals must be monitored, and the caregiver must remain attentive for much of the day. “In the end, your whole routine revolves around the person you have to care for,” Díaz says. This strain can lead caregivers to gradually give up their own space, stop meeting friends or become isolated from those around them.
“The primary caregiver suffers the most, above all, because they are there 24 hours a day, seven days a week,” she points out. That is why the association emphasizes one idea in particular: “They also have to take care of themselves. It is something we stress a lot: they have to take care of themselves in order to care for others.”
A SPACE ALSO FOR FAMILIES
Afedaz tries to support them from the very beginning. The usual first step is an interview with a social worker to understand the situation of the person diagnosed and their family and then guide them toward the available resources. The association offers residential care, a day center, workshops, home care and psychological support, as well as mutual support groups.
These services are not aimed only at caring for the person with Alzheimer’s. They also allow caregivers to regain part of their everyday lives for a few hours. “Even if it is just going shopping,” Díaz says by way of example. The association’s psychologist works individually with relatives and also through groups where they can share experiences with others going through similar situations.
The association is also calling for more research and greater accessibility to the healthcare system, especially when behavioral disorders arise and can make care at home even more difficult.
