Being born with a 50% risk of developing Alzheimer’s before the age of 45 can generate fear, and even more so when they participate in research where they may experience more anxiety with the idea of the disease in a close proximity. However, in Colombian families with a genetic risk of inheriting the E280A mutation in the Presenilin 1 gene, there is evident courage in facing this reality every day. This article seeks to pay tribute to these families, but especially to the caregivers.
The testimony of a young caregiver whose life revolves around his mother’s well-being helps physicians and scientists understand the Alzheimer’s disease in ways that are not found in books or articles: the everyday experience of “being” and the struggle “continuing to be”. Fear is not only felt by those who will be research participants, or by those who believe they will suffer from the same disease as their parent. Fear is also present in researchers when faced with a disease that has the upper hand, that avoids us from looking into the eyes of those who no longer remember, but reminds us of our powerlessness.
There is also fear in recognizing how much that is humanly possible still remains undone. Medical, social, or psychological support means understanding the caregiver’s daily struggles, when diapers run out, or they manage without a proper bed to rest. With the cruelty of dementia, death becomes secondary.
And perhaps the caregiver only hopes not to perpetuate suffering, but our fear is mistaken for indifference, and the fear of not knowing how to help prevails. For over 30 years, the Neuroscience Group of Antioquia (GNA), Colombia, has identified and followed a population with autosomal dominant Alzheimer’s disease, specifically the E280A mutation in the Presenilin 1 gene1. These families have consistently participated in research at the with a 94% adherence and retention rate2, even for 9 years in a failed clinical trial3.
During a follow-up home visit to patients with severe dementia, the son of an Alzheimer’s patient, who was also her caregiver, felt afraid to return for the cohort’s follow-up evaluations, even though he had been evaluated 10 years earlier. He is a 34-year-old Colombian man, high school graduate and with technical degree. Currently unemployed due to his permanent responsibilities as the primary caregiver for his mother for the past 3 years.
When inquiring about his experience as a research participant and caregiver, he showed me his writings about her family’s life surrounding Alzheimer’s disease. I asked him: Is there anything we can do to lessen people’s fear to participate in research to prevent or treat Alzheimer’s disease? The following text, “A caregiver’s perspective”, was his response.
Extract — continue reading at the source.
