Precis

Zhen remembers her wedding day well. When her father gave his speech, he urged her to have two children. But now Zhen is unsure whether she even wants to have one.

Not long after her wedding, Zhen’s father Liang was diagnosed with dementia. He was in his 50s. Now Zhen and her mother are caring for Liang full time. And Zhen doesn’t want to impose that burden on her children.

"The way I see it," Zhen explains, "without kids, if I develop the same condition as my dad, with what I know now, I can just send myself off to a nursing home and it’s done. I won’t put any extra pressure on my kids, and they won’t have to endure any depression or anything like that."

It’s a problem many families in China are grappling with. As the population ages, dementia is on the rise. But there’s little awareness of the disease and few government services.

In Australia, around 65% of patients with dementia live at home but in China more than 96% of people with the condition are looked after by their families. The obligation to care for your elders is deeply rooted in Chinese culture.

"That’s probably the traditional Chinese concept of filial piety, but the reality is you can’t fulfil your duty," says Zhen.

ABC reporter Lydia Feng presents this intimate and moving program about China’s hidden epidemic.

Working with local filmmakers, we take you inside three families stretched to the limit as they do their best to look after a loved one with dementia.

We meet a widow and daughter living in the countryside, where there are even fewer services for the elderly and their families.

We spend time with a blind couple in Beijing, where despite all hardships, Uncle Xing is still utterly devoted to his wife of nearly 50 years.

"I’ve looked after only one woman my whole life. She needs special care," says Uncle Xing. "I feel bad if she suffers."

"We’re not ready. We’re not even prepared for the challenge of aged care as a whole, let alone dementia care," says social worker Wang Shihong, whose organisation helps support the elderly.

Shihong believes the public needs to be educated about the problem.

"The symptoms are showing up but they’re not taken as something that needs medical attention," she says. "If it can be spotted early in its development, through screening for example, more can be done to slow the patient’s deterioration before it’s too late."

This film is a unique insight into the struggle of ordinary families in China to deal with a debilitating but little understood condition.

Episode teaser

Music

00:10

WANG SHIHONG: We’re not ready. We’re not even prepared for the challenge of aged care as a whole, let alone dementia care.

00:13

LYDIA FENG, Reporter: As China’s population ages, dementia is on the rise. But public awareness, support services and medical care are lagging far behind.

00:22

XING: "You’re remembering stories from the past."

00:35

LYDIA FENG, Reporter: It’s putting an enormous strain on Chinese families.

QIN ZHEN: That’s probably the traditional Chinese concept of filial piety, but the reality is you can’t fulfil your duty.

00:40

JIN RULIAN: "Get off!"

00:57

Intro

LYDIA FENG, Reporter: The expectation that you should care for your elders within the family is

01:00

Lydia Feng to camera. Super:
Lydia Feng
Reporter

baked into Chinese culture and even written into law.  More than 96% of dementia sufferers in China are cared for at home. For this program, we’ve worked with Chinese filmmakers to take you inside three families grappling with this Duty of Care.  

01:04

Title: Duty of Care

Music

01:25

Qin Liang in lift

01:33

Qin Liang in bedroom

LYDIA FENG, Reporter: Qin Liang was diagnosed with dementia in January 2021. His condition is worsening rapidly. The disease is already affecting his

01:43

Qin Liang and Yongmei testing motor skill

speech and motor skills as well as his memory.

01:55

YONGMEI: "Good. No problem."

02:05

Liang and Yongmei with book

LYDIA FENG, Reporter: Liang was a teacher but has been forced to retire early, and now spends his days at home, cared for by his wife Zhang Yongmei. 

02:11

Liang and Yongmei in kitchen cooking

Yongmei lost her mother to dementia just a few years ago.

YONGMEI: There's always a sense of strain.

02:22

My mum started to show symptoms at 83. So when he was diagnosed with the same disease early last year, I couldn’t accept it.

02:37

Liang takes pills

I took care of my mother. I know what it's like.

02:55

Family photos

Our daughter was already so emotionally mature.

03:02

Qin Zhen in car on phone

She'd come home every weekend to help me care for her grandmother. I feel like I owe my daughter so much.

03:08

Qin Zhen interview in car

QIN ZHEN: I was at university when my grandma started showing symptoms. I could see my mum was devastated. Grandma was unhappy too because Mum controlled her too much. Mum and Dad are even closer. They’re together 24/7. So it’ll be even harder for them.

LYDIA FENG, Reporter: Liang and Yongmei’s only child Qin Zhen visits more often since her father’s diagnosis.

03:18

Qin Zhen visits parents

China’s now abandoned One Child Policy has increased the burden of care on her generation.

QIN ZHEN: I think my main role is to calm their emotions. Often when I turn up, my dad is losing it.

03:51

Qin Zhen in kitchen with mum

04:19

Family at table

YONGMEI:  Lord, thank you for letting our family love and support each other. We thank you and appreciate you, and pray in the name of Jesus Christ. Amen. 

LYDIA FENG, Reporter: Qin Liang and his family are the lucky ones.

04:24

Alzheimer's printed info

They’re financially secure and well informed,

04:45

View of apartment buildings and homes

with access to medical services and expertise. It’s a very different story for millions of other families affected by dementia. Many lack the awareness to even seek a diagnosis. 

04:48

An estimated 93% of dementia cases in China go undiagnosed and therefore untreated, leading to increased suffering

05:04

Wang Shihong into office

for patients and their carers.

WANG SHIHONG: We’re not ready. We’re not even prepared for the challenge of aged care as a whole,

05:15

Wang Shihong interview

let alone dementia care. People in policy planning see the problem. They’ve started to learn more.

05:24

Wang Shihong at work

LYDIA FENG, Reporter: Wang Shihong is the founder of Xianhe Social Work Group, a network of community-based service centres covering greater Beijing. China’s nursing homes cater for just 1% of the elderly population.

05:35

Few of them offer specialised care and many simply refuse to accept dementia patients. Groups like Xianhe get government funding to help relieve the burden on people at home.

05:53

Beijing street GV

In this part of central Beijing, Xianhe serves around 500 households, about 50 of which include someone with dementia.

06:07

Xing and Zhu Min's home. Xing cooks

XING: I get up around 5 or 6am. I do some cleaning and laundry. When I’m in the kitchen and she’s inside, I need to be able to hear her. If something’s wrong, I need to rush to her.

06:20

LYDIA FENG, Reporter: Xing Dengyun and his wife Zhu Min are among those who get support from Xianhe. They’re both blind.

06:45

Xing and Zhu Min eat, Zhu Min takes medication

Min has the most common form of dementia, Alzheimer’s, and relies on Dengyun for everything.  They have a son, married with one child, who travels a lot for work and visits when he can. They met almost 50 years ago while working in a State-owned factory for the visually impaired.

06:59

Xing interview

XING: She was alone. I noticed, so I helped her get some water from the tearoom. That was the beginning. I’ve looked after only one woman my whole life. She needs special care. You can’t make her anxious, angry or sad. I feel bad if she suffers.

07:26

Xing puts phone on bed

XING: "I’ll put it here."

ZHU: "Don’t care."

XING: "You don’t care? Okay, I’ll just leave it here." 

Does she have feelings? She does. Once I played her a certain opera that reminded her of her mum. She started to cry. She missed her mum.

08:03

Xing and Zhu Min sit on bed

"Are you hungry?"

ZHU: "I’m going home."

XING: "Going home? This is our home."

ZHU: "No.

XING: "No?"

ZHU: "No."

XING: "Okay, let’s go. Wear one more layer."

ZHU: "No."

XING: "Okay, let’s go.

08:36

Xing and Zhu Min at front door

Now we’re at our doorstep."

ZHU: "No, it’s not."

XING: "Isn’t this the gate?"

ZHU: "No."

XING: I’d like to go out, but I can’t leave her alone. Actually, she likes going out too. She loves going out.

08:58

Xing and Zhu Min return inside

But our health doesn’t allow it.

ZHU: "Where’s my mum?"

XING: "Your mum’s not here."

ZHU: "Where is she?"

XING: "She died in 1984."

09:17

Xing helps Zhu Min into chair

My dream? I’d like to take her to the beach.

09:38

By high-speed rail. By plane. I need to postpone it for now. Interview

By high-speed rail. By plane. I need to postpone it for now.

09:40

Elderly woman walks in Changping

LYDIA FENG, Reporter: In Changping district, on the rural fringe of Beijing,

09:49

Wang Shihong visits elderly

Xianhe Social Work Group runs an outreach service for the elderly.

09:58

WANG SHIHONG: The two 'left behind' groups in rural areas are the elderly and the kids. Workers who move to the city have no choice but to leave the elderly and very young behind.

10:02

Rural elderly

LYDIA FENG, Reporter: The rural-urban divide is one of the defining inequalities of life in China.  For the elderly, it’s especially stark. Old age pensions and medical rebates are much lower in rural areas than in cities. Rural elderly have smaller incomes, fewer services and yet far higher rates of chronic illness like dementia. Rural seniors are more likely to be empty-nesters, and they suffer the highest rates of suicide of any group in China.

10:15

Wang Shihong on phone

WANG SHIHONG: "Yeah, I’ll meet you first. "

10:52

Wang Shihong with case worker on home visit

LYDIA FENG, Reporter: Wang Shihong is joining one of her local case workers on a follow-up home visit. At the woman’s home they’re met by two of her relatives from the village.  Shihong believes the elderly woman they’re checking on has Alzheimer’s, although she has not been formally diagnosed.

LI: "Why are you untying your shoes?"

10:55

Wang Shihong visit Jin Rulian and daughter

LYDIA FENG, Reporter: Jin Rulian is widowed and lives with her daughter Liu Shuangyan, also a widow. Shuangyan is her mother’s principal caregiver, even though case workers believe she has an undiagnosed intellectual disability.

11:19

LI: "Sit down, sit down. Have you eaten?"

JIN: "What did I have today? I forgot. When did I eat? I forgot."

11:36

LI: "What did you have for breakfast?"

JIN: "What meal? They left early. Today’s the first day."

LI: "What?"

JIN: "Of school."

LI: "Who went to school?"

JIN: "Both of them."

11:48

WANG SHIHONG: She’s going back to their childhood. One symptom is mixing up different timeframes. She can’t control her mind and gets easily confused.

12:05

"Try not to remind her too much. The more you try to remind her, the more anxious she gets."

12:15

Families aren't very aware of this condition.  The symptoms are showing up but they’re not taken as something needing medical attention. If it can be spotted early, through screening for example, more can be done to slow the patient’s deterioration before it’s too late.

12:23

JIn and daughter

JIN: "I take care of myself. Myself for myself. If I can do it myself, I’ll do it."

LIU: "Yeah. It’s good you’re mobile. If you weren’t, who would look after you? Live two more years."

JIN: "I’ve lived until I’m stupid."

LIU: "Going mad won’t help."

JIN: "No."

12:54

LIU: "Hey. Sit down. Sit down."

JIN: "No. I won’t sit anymore. I still want to…"

LIU: "What is it?"

13:32

JIN: "None of your business! I’ve got places to go."

LIU: "Sit down."

JIN: "No, no, no! This is my, this is my…"

LIU: "Where are you going?"

13:42

JIn attempts to pack bag

JIN: "I’m leaving with my luggage! What place is this? I can’t be here."

LIU: "Where are you moving it? Just put it here!"

JIN: "No, I’m leaving."

LIU: "Where are you going?"

JIN: "You tell me. Where can I go?"

LIU: "What are you doing? Just sit here and wait."

JIN: "I’m done trusting you.

13:52

Whoever fucking trusts you is a fool. You’re a scheming bastard. And I thought you were a good person. Go fuck yourself! As soon as I leave, you’ll have me killed. Don’t sit there! That’s someone’s spot."

14:22

WANG LIYAN: So, the situation is a woman in her late 40s with impaired mental capacity is taking care of someone with Alzheimer’s. It’s a very difficult situation.

14:47

Wang Liyan with Wang Shihing

Families like theirs are not isolated cases at the lowest levels of society.

WANG SHIHONG:  Especially in rural areas.

15:05

LYDIA FENG, Reporter: Back at the Changping office, Wang Shihong catches up with her old friend and colleague, Wang Liyan.  Liyan recently retired as the manager of a nursing home. She understands more than most the challenge of dementia care.

15:17

LIYAN: Caring for these patients requires a lot of expertise. Even if it's your own mum or dad, it’s a tough job taking care of them when they can no longer do it themselves. If my parents deteriorated that far, I couldn’t look after them on my own. It’s almost a reflex to turn away from such a difficult scene.

15:34

Liang walks with Zhen

QIN LIANG: Normally I can’t bring one with me, but today I just managed to grab my pack.

QIN ZHEN: I come home every second weekend or whenever my mum has something on or a friend asks her out. On weekdays I’ll come and walk with my dad. It gives them some space.

"What’s up?"

16:04

QIN LIANG: "Huh?"

QIN ZHEN: "Let’s go."

QIN LIANG: "Let’s go."

QIN ZHEN: The saddest thing is the idea that he’s lost his self-worth.

16:43

Zhen and Liang play badminton

Also, sometimes when his mind’s a mess he’ll forget who I am. Or Mum. When he can’t recognise me, he’s quite calm. But when he can’t recognise my mum, he’ll push her away, or even get violent.

16:57

Liang at home cutting fish

YONGMEI:  He’s always been a very easy-going person, tolerant and kind. Now on a bad day, if you initiate physical contact he’ll bristle, 'Don’t touch me!' And you don’t know what to do.

17:36

Yongmei

It feels terrible, it really does.

18:02

Zhen and Liang with stimulation device

QIN ZHEN: "Here. Quick, quick, quick! I don’t know exactly what it is. Sometimes I use it to stimulate the nerves in my brain."

18:08

YONGMEI:  It’s been seven years since my mother died. Now I’m trying to look after someone with similar needs, my stamina is waning. Yesterday, his condition flared up again and again.

18:26

Family at home

I said to God, 'If I can’t do this, find me a nursing home'. I just can’t bear to put him in that environment. Then I think about my daughter and I don’t want her to endure so much pressure. She needs to have her own life, her own family, her own children, and social life.

18:48

QIN ZHEN:  It’s like, we should start to look for an institution, but as soon as I contemplate it, I feel I can’t do it. That’s probably the traditional Chinese concept of filial piety, of keeping your parents with you. But the reality is you can’t fulfil your duties of filial piety. I have considered not having kids, because without kids, if the same thing happens to me, with what I know now, I could send myself to a nursing home and it’s done.

19:15

YONGMEI:  In the end when my mum had a fall, I couldn’t care for her anymore. I sent her off to a hospital. On my way home, I cried a lot. I felt like I’d abandoned my mum. But God knows, I just don’t have the strength. Even though it’s many years since that happened, I still feel sad. One day when I do the same to him, what will happen?

20:08

Xing listens to talking clock

TALKING CLOCK: "2022, March 25^th, Friday. Lunar calendar, 2/23. Current time 10:48pm. Temperature 23.2 Celsius."

XING: "Min, you hungry?"

ZHU: "No."

XING: "Not hungry?"

ZHU: "No."

20:51

XING: Let me take a rest. I’ve been busy all day without a break.

21:14

Xing sits at table

I’m exhausted, mentally and physically. In the senior services centre, they asked me why I haven’t had a recent health check. I said sorry, I’m too busy taking care of a sick lady.

21:24

Xing at sink/Zhu sitting on bed

It’s just my heart. Everything else is ok. I stopped my medication in summer but in winter it got bad again. She was really anxious. She’s afraid she’ll be left alone if I die.

21:42

Xing washes Zhu's feet

"Here, come to the sofa. Let’s wash your feet."

22:04

ZHU: "It’s too hot."

XING: "The heat is soothing."

ZHU: "The water. It’s too hot."

XING: "Other foot."

22:13

If I can’t do all this in two years’ time, I’ll hire a helper. That’s my only option if my health fails.

22:26

Xing takes medication

23:00

Xing sits beside Zhu

"Let me rest."

ZHU: "Would you like to go out? You don’t?"

XING: "No."

ZHU: "You won’t take me out?"

XING: "Need some rest."

23:18

Church choir

23:48

Yongmei and Liang in church

YONGMEI:  We started going together in October. I asked him, would you like to come to a service with me? He said, okay. Even though he didn't share my faith.

PASTOR: "To our brothers and sisters, beloved by God, peace be with you."

CONGREGATION: "Amen."

23:55

[Singing]

24:20

YONGMEI: Compared to a child, it's different looking after someone older. With a child there’s always hope for the future. But with dementia patients it’s bound to deteriorate. That sense of a downward spiral can take your mind to a place of despair.

24:25

PASTOR: "Is Communion important?"

CONGREGATION: "Yes!"

YONGMEI: Whatever happens, there’s a line in the Bible about the Lord’s grace being enough for all. That gives me strength to carry on.

24:47

"Let’s not focus on this now. Focus on the service."

25:08

Qin Liang looking at photo albums

QIN LIANG: High school. This is my graduation photo. Over 50 people. It was 1980… 1985… '82…  '82… I think I graduated from high school in '85. I forget so many things now. There’s some issue with my head. There seems to be a… a hole. The doctors say this disease, it’s like cancer. I won’t live for many more years. I was born in 1964. Born in '64. Born.

25:24

Super:
Xianhe Social Work Group

26:39

Social workers visit Xing and Zhu and take them on outing

FAN YINAN: Grandma wants to go out. Last visit, she said she wanted to go to the shopping district.

26:47

XING: "Yes?"

SOCIAL WORKER: " Are you ready?"

XING: "Yes."

FAN: "Have you got the wheelchair?"

XING: "Yep."

26:56

LYDIA FENG, Reporter: Social workers collect Min and Dengyun to take them on an outing to Wangfujing in downtown Beijing.

27:03

XING: "It’s over there."

SOCIAL WORKER: : "Oh, you know the way?"

XING: "Yeah."

SOCIAL WORKER: "Ok, I’ll let you lead the way. The light is green."

XING: "Head south."

SOCIAL WORKER: "Right, I’ll hold you and you lead the way!"

XING: "Right, let’s go. Head south."

27:11

SOCIAL WORKER: "When was the last time you came here?"

XING: "40 years ago."

SOCIAL WORKER: "Wow! That’s a long time but you still remember it clearly."

XING: "Yeah, I remember. Luckily the streets don’t move.

27:28

Xing, Zhu and Social Workers sit in square

Min! We’re at Wangfujing! Let’s sit here."

FAN: "Auntie, Uncle Xing is next to you. He’s not running away."

27:42

XING: "The sun feels good. As soon as we left home, I wasn’t tired anymore."

27:56

Xing plays song on phone. Xing and Zhu sit in square together

SONG: From the end of the earth to the furthest sea I searched for my true love.

28:10

XING:  Think about little kids. When they’re babies, they look different day by day. When they’re older, they change month by month, then year by year. When they’re adults, it’s decade by decade. Then it switches. At first, decade by decade, then year by year, month by month, and finally day by day. It goes backwards."

28:29

SONG: Who in life does not cherish their youth?

29:05

Credits [see below]

29:26

Out point

29:51