“The elderly are useless — we only cause trouble. Try not to blame me too much.” This was the final coherent sentence my grandmother said to me, uttered as I was leaving home for university in 2005.

That winter she began getting lost in the streets that she had navigated for decades, started mumbling to herself, and often forgot our names. At first we just chalked it up to old age, but it eventually became clear that something much more serious was wrong.

She deteriorated quickly. Soon I couldn’t even understand her when she called me on the phone. When I returned home in 2006 I found her laying silently on the bed, motionless, unable to recognize me. My mother sighed and told me that she was simply getting old. She couldn’t bring herself to admit that my grandmother had dementia.

We failed to find a reliable nursing home in our home city of Nanchang in eastern China’s Jiangxi province, and so we decided to care for my grandmother ourselves. The rules were set: sons would provide money; daughters would provide time. As the oldest daughter, my mother quit her part-time job and took on the majority of caregiving responsibilities. Her two sisters came over to assist on weekends and public holidays.

My two uncles provided a monthly stipend to buy medicine and nursing materials. In later years, my mother told me that those 11 months were among the hardest of her life. The feeding, diapering, and sleepless nights were bad, but what was worse was losing the emotional connection with someone she loved so deeply.

When I suggested that my grandmother had perhaps had dementia in 2008, my mother reacted violently, telling me: “Silly! How could she get that illness? She simply overused her brain from raising eight children and grandchildren, including you!”

Since 2009, my research has focused on long-term care and mental health of the elderly. Dementia is often stigmatized in China and there is a severe lack of literacy on it. I have encountered many times the same attitude my mother espoused when she chalked up my grandmother’s dementia to “overusing her brain.”

Dementia is caused by the decay of brain cells, and refers to a wide variety of brain diseases that reduce a person’s ability to perform everyday activities through progressive degeneration of memory, thinking, and language skills.

Alzheimer’s is the most common form of dementia, accounting for 60 to 80 percent of cases, but other types include vascular dementia, Lewy body dementia, and Frontotemporal dementia.

Alzheimer’s Disease International estimates that 10 million Chinese families have a relative suffering from dementia. However, statistics from China’s National Committee on Aging reveal that over half of these families are unaware of symptoms of dementia, and the diagnosis rate in China is about 27 percent, compared to 50 percent in the United States.

Most dementia-affected families in China mistake the disease with natural symptoms of aging. Consequently, nearly 70 percent of dementia patients are already in the later stages of the disease when they are first sent to the hospital. Although the progression of dementia is not reversible, it can be slowed through early diagnosis and proper treatment in the initial stages. It is very important for family members to recognize dementia as a serious disease and understand the importance of early treatment.

Ironically, although most Chinese lack dementia literacy, we use the word “dementia” quite often. The Mandarin word for it is chidai, but we also use this as a swearword for somebody who is dull-witted. The double-meaning of this word is indicative of the stigma toward mental health in China. In an epidemiological survey in the countryside nearby Chengdu, the capital city of southwestern China’s Sichuan province, I visited a couple who kept their mother who suffered from dementia chained to their bed.

With the brain section that regulates emotions in an advanced state of deterioration, the 79-year-old woman was severely affected by mania and kept cursing at people. Every time she walked through the village she was followed by a group of children who chanted “mad woman, mad woman.”

To minimize embarrassment and to ensure her safety, the couple chose to lock up the old woman. “We don’t want others to know we have a mad mother, and we don’t want her in danger or for her to put others in danger when we’re not around to supervise.”

Many of the interviews I request to do with families who have a relative suffering from dementia are turned down. The ones who do agree to talk to me usually just chalk up the illness to natural aging. Internalizing the stigma, many dementia-affected families in China intentionally alienate and isolate themselves from their communities. They are afraid of being associated with chidai.  

Without sufficient support from the government and the market, health facilities and professionals for dementia are scarce in China, leading most patients to be treated at home by families. However, stigmas and a lack of dementia literacy substantially weakens Chinese families’ capabilities to provide proper care.

What happened to my grandmother happens all over China on a daily basis — elderly afflicted by dementia are inappropriately cared for and the caregivers are overworked and struggle against societal prejudice.

An aging population and shrinking birthrate may worsen the situation. It is critical to create a support network for dementia by providing facilities that care for the elderly and work to eradicate the stigma of the disease. Some efforts are being made, but not nearly enough.

(Header image: A man suffering from dementia holds his wife, Guiyang, Guizhou province, Feb. 21, 2014. Liu Tingting/VCG)