Nuria Esandi Larramendi, Ana Canga Armayor,, Professors of the School de Enfermería
A heart for Alzheimer's disease
Alzheimer's disease affects more than 3.5 million people in Spain, including patients and their family caregivers. In Navarra there are between 9,000 and 10,000 affected. This disease, recognized by the World Health Organization (WHO) as an "epidemic of the 21st century", is one of the major national health concerns.
Remember Me! is the slogan with which this year the World Health Organization and association Alzheimer's International intend to recognize and remember all people living with Alzheimer's disease on World Alzheimer's Day.
Similarly, "nNOW Alzheimer's", an initiative of professionals and family associations involved in the care of these people, has launched an online social awareness campaign to help these patients. Put your heart into Alzheimer's! consists of sending a message of encouragement through its website(www.pontucorazonporelalzheimer.com).
As every year, this day is an opportunity to make society more aware of the disease and its consequences, which are not limited to the person affected, but extend to all those who care for and support them, mostly family members.
Currently, despite the knowledge that is held about the disease, its diagnosis brings with it stigmatizing ideas and behaviors. Evidence sample that affected individuals and their families isolate themselves and hide the disease because of the negative reactions they may encounter in society. Avoiding this erroneous perspective of understanding the disease requires a better knowledge of its different symptoms and implications throughout the process.
During the First WHO Ministerial lecture on the Global Fight against Dementia (Genoa 2015), the fight against stigma and social isolation was recognized as a central goal for the different governments of the world. Among the priority actions are, promote a better understanding of dementia and its consequences, and to encourage a real commitment of the population towards respect for affected people, favoring their participation and integration into society.
A study conducted at the University of Navarra with families and people with Alzheimer's disease in Navarra reveals that families continue to demand more political and health actions to obtain an early diagnosis of the disease. The traditional models of evaluation and diagnosis are reduced and ritualistic, mostly focused on physical symptoms, ignoring the personal experiences of the affected person and his or her family caregivers. Likewise, the findings of the study identify the need for actions aimed at promote a greater knowledge and awareness of the signs and symptoms of Alzheimer's, so that those affected can seek and obtain financial aid and access to information in a timely manner. Certain behaviors in the family, for example, justifying and hiding the symptomatology, or not reaching agreements regarding what is happening to the family member, may contribute to the delay in diagnosis.
Families often wait too long to seek care and, when they do, their concerns are not addressed comprehensively, i.e., physically, psychologically, emotionally and socially. After receiving the diagnosis, families express "feeling abandoned". The lack of contact with care services at the onset of the disease prevents families from receiving the necessary financial aid to organize and redefine their lives again, and thus reestablish family balance.
Therefore, in Alzheimer's disease care, it is urgent to adopt an inclusive and integrative approach , focused on the family unit, which offers support to the whole family to achieve proactive care planning.
At final, helping to overcome the stigma associated with Alzheimer's disease, as well as to ensure a better quality of life for those affected and their families is one of our priority objectives. Therefore, from the School of Nursing of the University of Navarra we invite everyone to put their heart for Alzheimer's!