Caring for parents with dementia tests families

Five years ago, Dung’s granddaughter Hoang Thanh, 26, and her family found themselves caring for another "child" when Dung’s dementia began to get the better of her.

At first, she forgot her relatives’ names, and even her own.

When her children came to visit, Dung saw them as strangers. During Lunar New Year festivals (Tet) and other national holidays, all she could do was join the children in asking for and receiving lucky money.

Dung and her 2-year-old great-grandchild inside their walled-up home, built to ensure that she does not wander out and get lost in the streets alone at night. Photo by Hoang Thanh

Nowadays, Dung has completely lost her memory and is unable to function on her own. The family has to lock their doors every night because she’s taken to walking out and wandering the streets alone and aimless if given the chance.

Statistics show that there are currently 531,000 people with dementia in Vietnam. It is estimated that this number will triple by 2050 due to the aging population. With 1.8 million people expected to be suffering from the disease by then, that means close to a full 2 percent of the population will be adults in need of full-time care.

According to Professor Nguyen Tuan Anh of the National Aging Research Institute, Swinburne University of Technology, models of long-term care for the elderly with dementia have yet to be fully developed in Vietnam.

Full services are only present in a small number of facilities such as nursing homes. More often than not, dementia sufferers have to rely on their family or under-trained caretakers.

At first, Dung’s occasional lapses in memory made her family chuckle. But as her condition worsened gradually, it became an intense pressure on her daughter Thanh and caring for her became an immense undertaking for the whole family.

"You’ll only understand how terrible dementia is when someone in your family suffers from it," she says, adding that no one in her family has any training on how to care for an elderly person unable to help themselves with the daily tasks of life: eating, bathing, going to the bathroom, et al, etc.

Doctor Nguyen Thi Thanh Binh from the Memory and Dementia Research Center at the National Geriatric Hospital states that caring for a loved one with dementia can take a toll on the family’s finances as well as their physical and mental well-being.

Members of the Patients with Dementia and Caretakers Club, part of the Memory and Dementia Research Center, National Geriatric Hospital, drawing at a workshop on July 14, 2023. Photo by Thanh Binh

The caretaker can become anxious and stressed because the patient is not eating, bathing, and instead is screaming, cursing, and wandering around getting themselves into risky situations.

Nguyen Van Duc, a 65-year-man living in Thanh Hoa, has even been scorned by acquaintances for neglecting his mother. Ever since the once healthy, active 90-year-old suddenly experienced frequent bouts of memory loss the whole family has tried their best to help her but it’s never enough and it never ends.

As a degenerative disorder, dementia in the elderly only gets worse over time, never better, except in very rare cases.

"Once, after we all ate and bathed her, she went all the way to the neighbor’s house to ask for a bowl of rice, saying that we didn’t feed her," Duc says.

She can’t sleep at night and thus gets out of bed and wanders out into the street at night alone, causing everyone in the family to lose sleep frantically looking for her. Duc and his wife now have to watch over her every night, often staying up the whole night to make sure she doesn’t leave her room and put herself in danger.

"My wife and I are also old now, and because we have to take care of my mom and work at the same time, we’re suffering sleep deprivation and are even losing weight in the process," Duc laments.

To ease the burden and confusion when caring for the elderly, Dr. Thanh Binh advises everyone to actively learn about dementia. When a family member shows symptoms of it, we must bring them to the hospital right away, as early detection begets the best treatment.

The family of the patients should join dementia support groups to learn the best practices that have eased the burden for others.

In April 2023, the Memory and Dementia Research Center established a club for patients with dementia and their caretakers to guide the caretakers on how to improve the well-being of the patients.

Unfortunately, all experts can often recommend is that families keep their elderly company during these difficult times, despite the hard work and diminishing rewards.

They also remind families that no matter how much they suffer from their loved one’s dementia, it’s important to remember that the person going through it is struggling far more. And their burden is doubled because they can’t even communicate it, even if some are aware of their condition. That awareness can lead to even more anger and frustration.

After experiencing all the hardships that her family had to go through, Thanh’s only wish is that all senior citizens can stay healthy and have a clear mind to be with their family for the rest of their lives.

"My grandma is a testament of what time and aging can do to a person. She doesn’t remember anything anymore. I feel so much pity for her," she says.