30% of caregivers of people with Alzheimer’s have problems balancing work and family; While 12% of the total must give up their work activity to devote themselves to the care of their family member. This was stated by Marilo Almagro, President of the Spanish Alzheimer’s Confederation (CEAFA), during the conference ‘Update on scientific research in Alzheimer’s disease and the needs of those affected’, organized by the Pascal Maragall Foundation in the Senate and in which the challenges are faced by caregivers in different walks of life. The problems faced were also discussed.
Looking at the confirmation of the Alzheimer’s diagnosis, the CEAFA president said that “there is little information about what the disease represents and what the itinerary is.” It is common for carers to experience fear and anguish that they do not know how to properly care for or care for the person, therefore, “At CEAFA we are addressing the high impact of a diagnosis of dementia on family, work, emotional and demand measures to reduce the economic level, as well as training and education for all agents involved”.
It must be remembered that Alzheimer’s is a disease that affects 1,200,000 people in Spain, a figure closer to 5,000,000 if we include the family. On many occasions, the stigma attached to the disease causes delays in accessing the health system. This narrows the potential for intervention options, “which leaves the family with the challenge of caring for a person in the more advanced stages of Alzheimer’s-type dependency,” the president said.
Effect of social isolation
The demands of permanent care for a person with Alzheimer’s mean that whoever bears the primary responsibility for their attention and care must give up the routine of their daily life and devote themselves to the task of caregiving. As explained by the president, “It causes the atmosphere to reduce to the home, the sick person, and the rest of their family. It is a form of unwanted loneliness, but it is inevitable in most cases.”
In this sense, it is worth noting that the majority of caregivers are still women (76%), who face great difficulties not only in maintaining professional or work activity but also in fully re-engaging in the world of work. represents.
With regard to the emotional part, as the disease progresses, “caregivers see a series of conflicting emotions that settle in their conscience, creating discomfort and anguish,” Almagro said.
According to CEAFA data, the progressive progression of Alzheimer’s disease and its dependency in caregivers represent an economic cost of 32,000 Euros per year on average, between direct and indirect costs. A very high figure that adds to the lack of support and loss of family income as a result of the labor impact.
Therefore, “it is necessary to have a plan that comprehensively addresses the problem to improve the quality of life of the people to avoid the inequalities that exist in this country with regard to access to resources and care based on the autonomous community of residence.” Do”. from the unit.
Finally, from the Spanish Alzheimer’s Confederation, he highlights the significant denial and trivialization still present in society about Alzheimer’s, such as, for example, ignorance of the new profile and needs of people affected by Alzheimer’s that emerge due to advances in research. Are in early diagnosis.