Caring for a father with Alzheimer's: "To treat him with dignity, I had to transport myself into his world."

BarcelonaNo one is ready to receive an Alzheimer's diagnosis for a family member. For American cardiologist Sandeep Jauhar, the day he was informed that his father, an eminent scientist and geneticist, was in the process of cognitive decline, he couldn't muster any other feeling than denial. It couldn't be. But it was, and at that moment, the entire family wasn't yet aware of how difficult the journey through his father's illness would be. A testimony he now recounts in the book My father's brain (Lunwerg, 2025).

"Despite being a doctor and treating patients, I now realize I wasn't prepared to be a family caregiver. If this was the case for me, I can't even imagine how difficult it must be for a non-specialist," he reflects. Therefore, in his book, he not only recounts his personal experience caring for his father, but also attempts to share key aspects of the disease to make it more understandable.

"At first, we all understood that having memory problems was a natural part of aging for any person," Jauhar explains. Even his father was aware that he suffered from lapses, but he didn't give it much thought. He mostly spent the day telling the same stories, or he would forget relatively simple things, like what he had eaten that day or the secret code to the safe, which was his wife's birthday.

However, there comes a time when his father not only forgets where he parked his car, but he no longer even remembers if he owns a car. "Paradoxically, that's when he stops having the metacognition to evaluate his own thought processes and being aware of his situation," Jauhar clarifies. That's when his father most believed he could lead a normal life as usual.

White lies

And here begins the real hustle and bustle for the family, who must tirelessly ensure his safety. And also his emotional situation. One day, his wife, who had long suffered from Parkinson's disease, dies. Soon, he begins asking about her as if she were still alive. "Where is my mother? When will she be back?" he keeps repeating. This creates an ethical dilemma among the brothers. While one of them decides to tell him that their mother will be back soon, that she's gone shopping, Sandeep believes it's fairer to tell him the truth: their mother is dead.

"For a long time, I thought telling him the truth was how to show him that he was still part of my world and that I valued him as a person. As if I were telling him he still deserved to know the truth," she reflects. But she soon realized that every time she told him her mother had died, her father suffered greatly, as if it were the first time he'd found out. On the other hand, if she did like her brother and told him her mother had left, he would remain calm and after a while, ask her the same question again, without remembering anything else. "I realized it was better to accept his reality, and that treating him with dignity wasn't about telling him the truth, but about transporting me to his world," Jauhar continues.

The moment palliative care was also not easy for the family. "My father had written that if one day he was very ill, we would not provide any more care. But when the time came, he didn't seem so unhappy because of the illness itself. He still wanted to live, he laughed, and he enjoyed things," she continues. What should you do in that situation? Should you heed what someone with a reasonable ability had written twenty years ago, or should you heed the person in front of you who seems to still want to live?

After much pain and tension, the father finally left. And with his loss, the rest of the family, despite experiencing their grief, also felt relieved. As survivors of a long battle, they all still bear the scars, "like soldiers returning from the front," says Jauhar. For him, having experienced his father's illness has also shaped him into the person and doctor he is today. These are lessons that are never forgotten and that, despite the years of darkness, end up shaping a personal, often positive, evolution. And if he had to take one lesson from all those years of struggle and sacrifice, Jauhar would choose the importance of knowledge. "Knowledge is power: the more you learn about the illness, whether physical, psychological, or social, the better caregiver you will be," he concludes.