30% of caregivers of people with Alzheimer’s have problems balancing work and family, while 12% of the total have had to leave work to devote themselves to caring for their family member.
This was stated by the President of the Spanish Alzheimer’s Confederation (CEAFA), Marilo Almagro, during the conference ‘Update of scientific research on Alzheimer’s disease and the needs of those affected’, organized by the Pascal Maragall Foundation in the Senate and containing the challenges. The problems faced by caregivers in different walks of life were also discussed.
Given the confirmation of the Alzheimer’s diagnosis, the president of CIFA explained that “there is very 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, for this reason, the CEAFA notes the “high impact of a diagnosis of dementia on family, work, emotionally calls for measures to reduce and economic level, as well as training and education to all agents involved”.
Alzheimer’s is a disease that affects 1,200,000 people in Spain, a figure closer to 5,000,000 if families are counted. On many occasions, as indicated by the President of CIFA, 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 dependence,” Almagro pointed out.
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 the president explained, “This reduces the environment for the home, the sick person and the rest of their family. It is a form of unwanted loneliness, but in most cases it is forced.
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, causing discomfort and anguish,” Almagro explained.
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 combined with a lack of support and a reduction in 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, the Spanish Alzheimer’s Confederation highlights the significant denial and underestimation that still exists in society regarding Alzheimer’s, such as, for example, ignorance of new profiles and the needs of people affected by the disease that are not recognized in research in the early stages. emerging due to progress. diagnosis.
