The president of the Alzheimer Foundation Spain (FAE), David Pérez Martínez, has claimed that the perspective with which Alzheimer is approached should be broadened, so that attention is not limited solely to the diagnosed person, but also includes their closest environment and, as a priority, the one who assumes the role of primary caregiver.
The also head of the Neurology Service of the La Luz University Hospital has launched this message during the inauguration of the day "Unwanted loneliness in caregivers of relatives with Alzheimer," organized by FAE on the occasion of World Alzheimer’s Day.
In the opening, the director of the Institute of Elderly and Social Services (IMSERSO), Mayte Sancho, also intervened, defending the need to move towards a more flexible care model, centered on the person and their family and social context.
"Those who need long-term care deserve to be able to remain in their environment with the necessary supports, combining services and resources that truly respond to their needs and also to those of the caregivers, both family and professional," she stated.
Unwanted loneliness in caregivers
The meeting, which brought together experts, professionals, and family members, emphasized unwanted loneliness. Regarding this phenomenon, the member of the Technical-Scientific Committee of the Network for the Care of the Elderly in Loneliness of the Community of Madrid, Josefa Ros Velasco, recalled that being physically accompanied does not guarantee feeling supported.
Ros Velasco, responsible for the invited conference, emphasized that caregivers present a special vulnerability to loneliness, derived from a lack of social recognition, sufficient supports, and opportunities to maintain meaningful connections. Therefore, she insisted that the caregiver also needs to feel cared for.
In this context, the first results of a pilot project on unwanted loneliness in caregivers of relatives with Alzheimer, promoted by FAE, have been announced. The program proposes a mixed intervention that combines in-person sessions and workshops with online group follow-up and support.
According to the psychologist of FAE Alberto Sánchez Cañizares, the preliminary data indicate that the task of caregiving is gradually transforming social relationships, personal activities, and time management, especially when the process extends over years and the demands of the person with Alzheimer’s increase.
In this line, the psychological intervention developed has contributed to reducing the subjective feeling of isolation, reinforcing emotional regulation strategies, and promoting the creation of community networks and mutual support among caregivers who go through similar situations.
"This study represents a first intervention to verify the effectiveness of this type of support for caregivers. Our goal is to take a step further, expand the sample, and move towards a clinical trial that allows us to consolidate a model that can be applied and reach many more people," pointed out Dr. David Pérez.
Detecting loneliness and accompanying the caregiver
The day concluded with the round table "Addressing Alzheimer’s also implies preventing unwanted loneliness," in which the available scientific evidence, the experience of professionals working with families, and the day-to-day life of those who care were shared.
The technical director of Fundación Alzheimer España, Esther Armanz Narganes, emphasized the importance of timely identifying situations of loneliness and providing support, information, and resources to families, reminding that the well-being of the caregiver directly impacts the quality and sustainability of care.
"The caregiver is a fundamental resource for caregiving, but we need to change the approach and also ask ourselves how we can help him. We must intervene from the beginning, before overload and loneliness appear, and adapt resources to the needs of each person and each moment of the caregiving process," she highlighted.
At the table, Juanjo, a family member and primary caregiver, recounted his experience to show how the disease not only affects the person receiving the diagnosis but also profoundly alters the life of the caregiver, conditioning their routines, social circle, and future projects.
The closing of the day has served to reinforce the idea that the well-being of the caregiver must be integrated into the global approach to Alzheimer’s, a pathology that forces the reorganization of family dynamics and demands specific responses for those who provide daily care.