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2019-03-04 11:17:07 Voices

Whenever our conversation turned to Liu’s husband — I’ve given her a pseudonym to protect her identity — I watched as she struggled to hold back tears. “When he was young, he received an education, was cultured, and always dressed neatly,” the 76-year-old recalled, her hands clutching his. “Matchmakers were always trying to set him up, but he still wanted his parents to come to my house [to discuss marriage].”

Today, such memories help keep her going. Her husband has been diagnosed with dementia and has been bedridden for over a year. He’s barely able to talk, leaving Liu to spend her twilight years navigating the physical, mental, and emotional challenges inherent to caring for a loved one with the condition.

It’s a challenging role, even in the best of circumstances, but in rural China, it can be a task of herculean proportions. Between September 2015 and March 2018, my research team and I carried out two surveys on dementia caregivers in rural and rapidly urbanizing parts of the southwestern province of Sichuan. We found that a lack of basic medical knowledge led to many of them misunderstanding dementia symptoms, potentially compounding the problem and worsening not just the patient’s quality of life, but their own as well.

Currently, China has the largest population of people living with dementia in the world. According to a report published by the Bulletin of the World Health Organization, as the country’s population continues to age, the number of dementia patients is predicted to jump from 9.6 million in 2010 to 23.3 million in 2030, when the country is expected to account for roughly 30 percent of the worldwide total.

Meanwhile, the medical profession is at a loss for how best to treat the condition, which is not a specific disease, but an umbrella term describing a range of symptoms related to a loss of memory and cognitive skills. Although targeted, effective interventions and care can slow the progression of dementia, the work involved is staggering and exacts a significant physical and mental toll on caregivers. Over time, this can easily lead to resentment or a decrease in their levels of attentiveness and care — which in turn can have a negative impact on patients.

In one extreme case, an elderly dementia patient was moved several times a month, living with each of his three sons for 10 days before rotating.

In developing countries like China, the burden of dementia care falls disproportionately on families and loved ones. According to the World Alzheimer Report 2015, more than 94 percent of Alzheimer’s patients in developing countries are cared for by family members. In China, the challenge of providing effective care can be especially formidable in rapidly urbanizing areas, where traditional family structures and values are fading away right when they’re needed most.

Our own study backs this up: We found that in rural Sichuan, caregiving responsibilities were still divvied up along traditional lines, with sons and their wives the most common source of care, followed by spouses, daughters, and occasionally grandchildren or extended family members. In addition to their nursing duties, caregivers must also juggle their professional and familial responsibilities — all while trying to integrate into rapidly expanding cities. Some handled this by splitting care duties among family members. In one extreme case, an elderly dementia patient was moved several times a month, living with each of his three sons for 10 days before rotating, an arrangement that allowed his caregivers to continue working part time.

The work of caregiving has a significant impact on caregivers’ physical and mental health. Over 31 percent of those surveyed reported that their roles had a frequent or constant effect on their health; 32 percent said the same of their personal lives. We found that caregivers’ perceived levels of burden were strongly correlated with the amount of time they spent each day caring for their loved ones, their age and physical health, and the severity of the patient’s symptoms. 

Take Liu’s husband, for example. Before he was incapacitated, he repeatedly wandered off and would often lose his temper and shout at her for seemingly no reason. Likewise, it’s not uncommon for those living with dementia to become verbally or physically aggressive. Even dealing with the nonaggressive behavior associated with the condition — such as anxiety, fear, or increased irritability — can be draining. A high percentage of dementia patients also have depression, further complicating care.

In the course of our research, we found that a key contributing factor to caregivers’ stress levels — and thereby the quality of life for those under their care — was a lack of awareness of the condition. To begin with, in the early stages of dementia, patient behavior was often misunderstood by their loved ones as them acting out. Due to their insufficient knowledge of the condition, caregivers frequently failed to recognize the symptoms, instead attributing any misbehavior to “naughtiness” or a lack of self-control. Many caregivers also reported having a hard time acclimating themselves to the personality changes that accompany dementia. All this can have a negative impact on patients, too. People with dementia do not completely lose their cognitive abilities; they sometimes perceive their caregivers’ frustrations and internalize them, which can worsen their own condition.

Families will therefore remain the country’s primary source of care for the foreseeable future, and they should be trained to identify and care for dementia patients.

To cope with their new role, caregivers often try to find meaning in their nursing work. According to our surveys, rural Sichuanese tended to do this four ways. First, they framed the care they provided as beneficial to themselves and their families, viewing it as a means of strengthening family ties. Second, they contextualized the work in terms of religion. Several respondents, for example, reported viewing their caregiving roles through the lens of karma: They were being punished for misbehaviors in their past lives, and must either fulfill their obligations or risk further punishment in the next. Third, they regarded caring for their elderly loved ones with dementia as a basic way to discharge their familial responsibilities and their responsibilities as humans more generally. Finally, they used their new role as an opportunity for reflection, a reminder of what is valuable in life.

Yet while many have been doing the best they can in a difficult situation, if China is to have any hope of caring for the millions of new dementia patients expected to appear over the next decade, they will need help. The country’s health authorities must pay more attention to the needs of its caregivers. According to our research, although the proportion of elderly people with dementia willing to live in nursing homes is on the rise, it remains low overall. Families will therefore remain the country’s primary source of care for the foreseeable future, and they should be trained to identify and care for dementia patients. This should include not just the dissemination of basic facts about the condition, but also tips for maintaining their own mental health. Professional intervention and support groups are also effective ways to improve care and help caregivers find meaning in their work.

China’s health authorities aren’t the only ones who should be thinking about how to meet this challenge, either. Urban planners must ensure neighborhoods are equipped with high-quality elder care facilities, and they should incorporate “dementia-friendly” design principles into their plans. One Shanghai neighborhood has already started doing so, as planners there have implemented a system meant to catch cases of dementia early and provide patients and their families with additional assistance.

In the near future, however, none of this is likely to help caregivers like Liu. Still, she continues to find her own way as best she can. “Unlike other men in the village, he rarely drank and never beat me,” she told me. “Now that he’s old and confused, it’s time for me to take care of him and pay him back.”

Translator: Matt Turner; editors: Lu Hua and Kilian O’Donnell; portrait artist: Zhang Zeqin.

(Header image: An elderly man sits alone in a nursing home in Beijing, March 22, 2012. Yin Yafei/VCG)