Alzheimer's: who takes care of those who take care of them?

It was 2005 when, one day, an employee working at the home of architect Miriam Morata's parents, 66, mentioned that her boss, Rubens, had come home from work and left his car running in the middle of the street. She found it strange, but attributed it to stress. It seemed a plausible explanation. Over time, however, other intriguing behaviors began to be noticed. Rubens would disappear and take a long time to return. "He could be outside, looking for his pet dog, who got out," said Miriam's mother, Encarnação.

Until everything changed, at the table, during lunch. "I remember he mentioned some work he'd paid for, which hadn't been delivered as agreed. I suggested he stop the check," Miriam recalls. It was then that her father asked a question, which was the first sign of turmoil. A businessman accustomed to dealing with finance and banking, he asked his daughter, "What does a stop mean?" When Miriam began to explain the term, he asked another question: "What is a check?" It definitely wasn't just stress.

When seeking medical care for her father, Miriam was literally met with a hurdle. "I took him to a hospital, where he would be evaluated by a psychiatrist. By the time I was looking for a place to park the car, they had already been seen. I wanted to talk to the doctor, but she just said, 'Your father has Alzheimer's and can't be alone anymore,'" she says. Miriam asked what that was, but instead of answering, the doctor called the next patient and slammed the door. She found herself alone, not understanding what was happening, much less what her next steps would be.

The architect didn't know it yet, but from that moment on, she became part of a group of people who are still forgotten today: caregivers of people with dementia, including Alzheimer's. Information was so scarce that she decided to share her experiences on a blog. Maybe her story would become known? Maybe someone would identify? Maybe someone would offer help? It didn't happen. At least, not anytime soon.

Alzheimer's is the most common type of dementia. It is a progressive neurodegenerative disease for which there is currently no cure. According to the Brazilian Alzheimer's Association (ABRAz), the condition is caused by the abnormal accumulation of certain proteins in the brain, causing cell damage. In addition to primarily compromising memory, it can affect language, reasoning, mood, orientation, and, in advanced stages, motor functions.

Rubens's illness progressed rapidly, leading to his death within a year. But Miriam's journey with the disease was far from over. Eight years later, Encarnação, also diagnosed with Alzheimer's, began acting strangely and depended on her daughter for care until her death in 2015.

Invisible care

According to estimates from the Ministry of Health, approximately 1.2 million people live with Alzheimer's in Brazil, and 100,000 new cases are diagnosed each year. "With the aging population, these numbers are likely to increase. It's an urgent issue," warns Professor Walter Teixeira Lima Junior of the Federal University of São Paulo (Unifesp), co-author of a groundbreaking Brazilian study on the reality of caregivers of people with dementia in the country, published in June of this year in the scientific journal Alzheimer's & Dementia: Translational Research & Clinical Interventions .

The survey collected data from more than 700 Brazilian caregivers of people with dementia syndromes, shedding light on their shortcomings and unmet needs, as well as the emotional burden and financial hardships. The study showed that women are the most responsible for caregiving: 9 out of 10 caregivers are daughters, wives, or daughters-in-law in their 50s. Almost all (94.9%) provide this care without any pay, and 42.8% have had to leave their jobs to dedicate themselves fully to their family member with dementia. The consequences are devastating: 85% report emotional exhaustion and 78% constant physical fatigue.

Miriam lived this reality over the years, dedicated to caregiving and worrying, without any kind of help. The physical and emotional scars remain forever. "It will be 10 years in December since my mother passed away, and I still have pain in my shoulder [ from the physical effort of caring for her ]. Years after her death, I would still hear her calling me from the bedroom. I would rush up, go there, and see the empty bed. It was frightening," she recalls. "Even after the person who needed this care dies, the family caregiver will never be the same person again. We will always be someone with a gaping wound," she adds.

Miriam admits that, during her most difficult days, she even had suicidal thoughts. "When you live with dementia, you go crazy with it. I even thought about putting a gas canister in the middle of the room and blowing it all up. This was because I knew I couldn't die before I left her alone. Otherwise, who would take care of her?" the architect confesses.

A long (and urgent!) road

The numbers compiled by the Unifesp research group represent a snapshot of a problem that already seems enormous—but is likely even larger than the data suggests, considering the social, geographic, and economic barriers to diagnosis. For Professor Walter Teixeira Lima Junior, it's urgent to advance the implementation of public policies, the understanding of the disease, and practical support for these caregivers. "These are people who cannot continue to live alone and remain invisible," says the study's co-author.

Although slow, some progress has been made in recent years. In 2024, Law 15.069 was passed, establishing Brazil's National Care Policy. Among its points, the text proposes a fairer division of caregiving responsibilities between men and women, in addition to defining the responsibilities of the state, society, and the private sector. The law prioritizes parental care, care for people with disabilities, the elderly, and caregivers—paid and unpaid. Promises include expanding home care services and creating centers that promote collective care.

It's a start, but as Lima Junior points out, it's crucial to get all of this off the ground as soon as possible. "We still need to plan, allocate funds from national, state, and municipal budgets, create the physical structures and teams... All of this needs to happen 'yesterday,' but it will likely take years," he assesses. "The only way to ensure the well-being of the person needing care is to focus on the caregiver. By taking good care of the caregiver, you automatically improve the care provided to the person who needs it," he concludes.

Miriam, who has twice experienced caring for elderly people with dementia, has experienced this neglect firsthand and sees a considerable gap between the texts and reality. "The National Care Policy, the Elderly Statute—all of this is wonderful," she says. "In real life, however, you go to the health center and can only schedule an appointment for six months from now, the medicine is out of stock, the geriatric diaper doesn't arrive for ten days. But the problem is happening now. How are these people going to solve it today?" she asks.

Pain that became history – and welcome

Miriam had to walk her journey alone because there was no other way. Later, however, she transformed her pain into support for thousands of people facing similar challenges. In 2017, she published the book Alzheimer's – Diary of Forgetfulness . To promote the book, she created a Facebook page, which spawned several groups. These virtual communities are led by her and currently have over 100,000 members.

At the same time, the former caregiver also runs WhatsApp groups and promotes and participates in in-person meetings. Finally, Miriam created the platform "Cuida de mim – Alguém que eu amo tem Alzheimer's" (Take Care of Me – Someone I Love Has Alzheimer's), offering information and support courses for caregivers, and has written other books on the subject. Among them, one is dedicated to caregivers, titled Alzheimer's: Assombro e Cura do Cuidador (Alzheimer's: The Haunting and Healing of the Caregiver ). "We don't heal ourselves, but by transforming the pain into a story, we can validate it. The pain doesn't go away, but it helps," she concludes. Since the disease destroys memories, let the memories and pain be recorded, as support and a hug for those who care.