The Hard Part of Dementia Care Isn't the Dementia Patient—It's the Caregiver Who Gets Dragged Down
The difficulty of dementia care lies not in the patient's condition itself, but in the caregivers who are worn down day after day—care turns wives into nurses and forces post-90s to quit their jobs. Love is the starting point but not the support; the system hasn't caught up with these families.
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The care resource gap ultimately falls back on every family
China's population aged 60 and above is 323 million, accounting for 23% of the total population; there are 35 million disabled elderly, but only about 500,000 eldercare workers. The supply gap is not absorbed by the market or institutions; the pressure mostly falls back on families and individuals. Alzheimer's is not a distant term: reports say China's patient numbers account for nearly 30% of the global total, and the host estimates that on average, one in every 20 Chinese families is affected—for the first generation of only children, this may be the reality their parents are approaching.
Dementia has no standard symptoms; movies are unreliable
After interviewing 34 families, Tang Yong most wants to correct the misconception that dementia patients have a uniform image. Society's imagination of dementia mostly comes from movies, neighbors, or hearsay; the professor's incontinence in 'Still Alice' is just one type. He has seen an elderly man who, having been a tailor, still noticed stains on visitors' clothes and taught them to remove them with orange peel; and an elderly woman who, disabled after a car accident, could only hum 'Liuyang River' with focused expression. Dementia itself covers multiple causes—Alzheimer's, vascular dementia, and others—and each person's life imprints remain in different ways, so care cannot follow a script.
— Tang YongThe dementia village ideal depends on state nursing insurance
Most people see the Dutch dementia town Hogeweyk as the ideal answer: residents shop at the supermarket and visit cafes like ordinary residents, while staff pose as shopkeepers to maintain a normal atmosphere. But the host adds details that expose how hard it is to replicate: the 23 houses built in 2009 cost over 18 million euros, of which 17.8 million was borne by the government, and residents' costs are also covered by long-term care-related systems. In contrast, what Tang Yong saw in a low-income U.S. nursing home was the opposite: elevators had to be locked to prevent dementia patients from wandering off. The same disease differs not in philosophy but in the national payment system.
Love isn't enough; sacrifice drags down caregivers
The host captures the caregiver's predicament well: many oscillate between 'I love my parents very much' and 'I'm about to be dragged down by them.' Tang Yong says care is not one-way help but a relationship; when a spouse must learn to bathe, feed, and manage emotions, the original equal partnership is overlaid by a nurse-patient relationship. Long-term sacrifice is not a beautifiable devotion: twenty years ago in Guangzhou, he interviewed a daughter who, after caring for her disabled father, divorced and fell into severe depression; the book also features a post-90s caregiver forced to quit their job due to caregiving pressure. Love is the starting point, but without external resources and community support, caregivers themselves become patients.
— Tang YongThe more you see, the less confident you feel about eldercare
Having studied eldercare for years, Tang Yong himself has no clear plan for his own parents' care. He is a first-generation only child; his parents are both 75 this year, but the more cases he sees, the less certain he feels. His research assistant even said after each interview that the more families she saw, the less she knew how to arrange care for her own parents. Multi-child families also have friction: who does more, who pays less, or someone's rough caregiving causes bedsores. Only-child families lack shared manpower; one person moved their parents to Shenzhen, where rent, medical costs, and nanny fees stacked up faster than retirement wages rose. An ideal model cannot be designed by a single child independently.
— Tang YongThe pain of dementia care is losing every day
The biggest difference between dementia care and disability care is that caregivers must repeatedly accept loss. While volunteering in Seattle, Tang Yong observed an elderly man who initially could paint blue lines on wet watercolor paper, but weeks later could only praise others and dared not put brush to paper. Another woman's husband reported new losses every week: his wife couldn't recognize their daughter's newborn grandson and didn't know where this child came from. This daily, irreversible downward slide drains caregivers more than physical disability. The long duration of care is not repetitive hardship but facing a small farewell every day.
— Tang YongLong-term care insurance has arrived but doesn't cover all elderly
Long-term care insurance was piloted in Qingdao and Shanghai in 2016, and by around 2025 had expanded to about 90 cities; the official pace is to move toward universal coverage in the next two to three years. But Tang Yong reminds that long-term care insurance is not giving money to every elderly person; through unified assessment, it mainly covers those with moderate to severe disability, paying for home care, meal delivery, and other services; those with mild conditions may not qualify. The hardest part is also cultural: sending parents to a nursing home is often equated with filial impiety in China, and elderly people, like the grandfather in the interview, feel their hair would fall out within a month. Tang Yong's judgment is that as younger generations age, the proportion actively choosing institutional care will rise, but the institutional gap will not disappear automatically.
— Tang YongIn their own words · checked verbatim
I oscillate between 'I love my parents very much' and 'I'm about to be dragged down by my parents.'
我非常的爱我的爸爸妈妈 和我快要被我的爸爸妈妈拖垮了 这两种情绪之间反复摇摆
So I think care should still be a kind of relationship. In this relationship, I think both the caregiver and the care recipient undergo great changes in identity, emotions, and even the pace of life.
所以我想这个照护 应该还是一种关系吧 其实在这一段关系当中 我觉得照护和被照护者 他的身份情感 包括他的生活的步调 都会发生非常大的一些改变
Tang Yong36:31
It's like riding a slide—you're on the way down. So at that moment, I think this kind of care is indeed long.
就是坐滑滑梯 你是往下走的这个过程 所以这个时候 我在想这种照护 它确实是漫长的
Tang Yong37:31
I think although love is a very important foundation, it should not be the only condition for care. It still requires external resources, including social support, and so on.
我觉得虽然爱 是非常重要的基础 但他应该不是 照护的全部的条件吧 他还是需要一些 外在的资源啊 包括一些社会的支持啊 等等
Tang Yong41:34
Although I see more and more cases, it doesn't mean I have a very complete or perfect plan for my parents' future care. On the contrary, because I've seen so many different stories, I actually have more confusion.
虽然看得越多 然后接触的案例越多 但其实并不意味着 我自己有了一个 就是非常圆满的 或者非常完满的 一个未来父母的 一个养老计划 正因为看到的 各种各样的故事非常多 反而其实让我有了 更多的一些困惑
Tang Yong46:39
His wife couldn't recognize the baby her daughter had given birth to—her little grandson. She didn't know where this child had come from.
就是他的太太竟然没有办法认出来 他女儿生的这个宝宝 就是他的小外孙 他不知道这从哪里来了一个这个小朋友来到他们家
Tang Yong53:41
He said, 'In that nursing home, I felt like my hair would all fall out within a month.'
他说我在那个养老院里 我感觉我这一个月我的头发都快掉光了
Tang Yong55:43
Figures
| China's population aged 60 and above | 323 million, 23% of the total population | 0:00 |
| Number of eldercare workers nationwide | about 500,000 | 1:00 |
| Share of Alzheimer's among dementia cases | about 40%-50% | 15:19 |
| Long-term care insurance pilots | Piloted in Qingdao and Shanghai in 2016; expanded to about 90 cities by 2025 | 1:01:49 |
Glossary
- Hogeweyk
- A closed community in the Netherlands designed for people with severe dementia, where staff pose as residents to maintain a normal living atmosphere.
- The Soul of Care
- A book by Arthur Kleinman that argues care is not one-way help but a relationship.
- informal care
- Unpaid care provided by family members such as spouses and children, as opposed to paid caregivers.
- long-term care insurance
- A social insurance that pays for care services for disabled or demented elderly, not a cash subsidy.
- wet-on-wet watercolor
- Painting on wet watercolor paper so colors blend naturally, used as a non-drug intervention for dementia patients.
How to listen
Post-80s and post-90s only children, and urbanites whose parents are aging while they haven't made any eldercare arrangements; also those who want to understand the real gaps in the care market.