Her father wanted her to become a doctor, but she chose anthropology – only to end up in healthcare. Anne-Mei The, professor by special appointment of Long-term Care and Social Approach to Dementia, wants to give people with dementia their normal lives back as much as possible. “Many doctors still say: ‘Nice such a social approach, but those people are sick, aren’t they’.”
Do not forget, emphasizes Anne-Mei The (57), that the majority of people with dementia still live at home. They often withdraw. Also for fear that someone will come in who thinks the house is a mess: ‘You’d better go to the nursing home.’ The endowed professor of Long-term Care and Social Approach to Dementia: “Nowadays I think: then it’s just a bit dirtier. Maybe not fun, but not the end of the world either. Moreover, what does it smell like in a nursing home? Can’t be described.
Of course, accidents can happen at home. But many accidents also happen in nursing homes. People trip over there at night over a diaper and break everything. I hear so many children say, ‘If I had known this, I would rather my mother had fallen down the stairs at home, at least in her own environment’.” Anne-Mei The just wants to say: “At some point it will be ready. Whether you are still scratching around in the nice old house or are wasting time in the nursing home. But we dare not think that way. While: where the road ends is clear. But what that road is like, what you experience, how others treat you: that’s what counts.”
‘The disease is bad enough, but the environment just adds to it. Dementia patients feel like second-class citizens’
At the beginning of October, the endowed professor, writer and entrepreneur gave her inaugural lecture at the VU on dementia, diversity and inclusion. The common thread in her argument: see the person behind the diagnosis of dementia. How the environment sees an Alzheimer’s patient largely determines how he feels. A belief that has grown stronger over the years. She comes from a Chinese-Indian family of doctors. Her father was an internist in Groningen. When Anne-Mei was a young girl, he sometimes took her to the hospital, into the ward. He hoped that his children would also study medicine. “But I’m not the type for that. A little dreamy. Not good at science subjects.” Laughing: “I think maybe I didn’t have the courage to get out of it completely. Because I did study healthcare.”
The chose to study anthropology, later followed by law. In the 1990s, she ended up as a student assistant in the Groningen hospital where her father also worked. “Actually, as an anthropologist you go to strange, unknown places. But now I suddenly looked through the eyes of an anthropologist at the culture of a hospital I knew so well. They have been the most impressive years of my working life.”
Ambiguous
She walked around the lung ward to study euthanasia, but gradually shifted her PhD research to the hope of a cure. The was wrong when the pulmonologist had to tell a shagroker that he had an aggressive, incurable form of cancer. “The patients didn’t want to talk about death at all. They wanted to live. The doctors said, ‘We can’t make you better anymore’, but then they suggested an arsenal of treatments. Which gave those patients hope again. It was like a big play, in which everyone had their own part. Those years in the hospital taught me so much about life and death and how ambiguous people are. That in one situation they know they are going to die, and in the other they don’t.”
She discovered how ambiguous the professor herself is through Mr. De Winter, one of the lung cancer patients she followed. A sweet truck driver, a family man, who fought hard against death. He was on chemo on chemo on chemo. The sat next to him in the waiting room, next to his bed in the hall. Then the inevitable moment came when Mr. De Winter told her he didn’t know if he would see Anne-Mei again. “I’m almost crying now. I said, “Well… if you can’t come to the hospital anymore, I’ll go see you.” A few days later his daughter called: father had passed away. I thought, so that’s how it works. I study death and have repressed it myself.”
Hesitantly: “It was also a time… The doctors were nice, but you did have that hierarchy. And a culture of not crying. Then Mrs. Jansen came and I said: ‘That’s the lady with the dog, who really wanted to go to Spain. The doctors said, ‘Dog? That’s the lady with a small cell bronchus carcinoma with metastases in the brain.’ They simplified her into an organ that no longer worked.” The encountered the same blind spot when she walked into a nursing home in the late 1990s and gained national fame with her book about it: In the waiting room of death. “You didn’t really know who those residents were. It was overloaded washing-urine care.” Again the anthropologist was confronted with himself. Her book made her instantly become the dementia expert.
Then she was asked painful questions: what is it like to have dementia? She realized: I don’t know at all. “I myself had also walked around the demented residents with a bow. I was mainly concerned with the staff.” The real insight only came when she came into contact with acquaintances who suffered from dementia and when she started researching them. “The previously successful husband of a colleague said: ‘I notice that people suddenly see me as that shuffling man at Albert Heijn.’ The wife of a former teacher said: ‘My friends are suddenly afraid to come. I have to reassure them.”
They simplified her into an organ that no longer worked.
Misunderstood
It was obvious that these people felt misunderstood. That there was a misunderstanding in which it was assumed that they could no longer do or realize all kinds of things, while they had a keen eye on how others looked at them. “The disease is bad enough, but the environment adds to it, for example by talking about you when you’re sitting there. How you are seen through the eyes of another also determines your own image. People with dementia feel like second-class citizens. See the man whose life has come under pressure – that’s what they taught me.
Of course, dementia is a disease, I don’t deny that at all. Only: the suffering of people with dementia is that disease, but also very much how they can live their normal lives. Can I still be a mother, girlfriend, partner? Help me with that. Help me to feel more confident.” That’s what Anne-Mei The does, already seventeen years old. With her company Tao of Care, she supports healthcare institutions to put her ‘social approach’ into practice.
“We help people with dementia to live a pleasant life for as long as possible.” Tao of Care has now run eight social trials at various healthcare institutions, municipalities and insurers throughout the Netherlands. “You know the movie Intouchables? It’s about a paralyzed man who gets a black ex-con as a caretaker. That boy – his name is Driss – looks at that man with fresh eyes. Of course he has to be taken care of, but the man mainly wants to do fun things. Go out. And be taken seriously. They undertake all kinds of things, drive a red sports car, and have a lot of fun together. The contact is equal. That movie was an example for me.”
Tao of Care now has 25 permanent employees who lead social approach teams: teams of ‘Driss’ that have been selected and trained by the company. “Suppose you have dementia and we come into contact with you, through your GP, your children or husband. Then a Driss comes to listen to you. And you say, “I’m so bored. I always liked to play the piano but I can’t read the music anymore.’ Driss can find a student at the conservatory who will practice with you on the grand piano in the corner and talk about music. In this way we build a shell around you of students, status holders and volunteers. And we try to resuscitate your former social network, for example by organizing dinners at your home.”
We help people with dementia to live a pleasant life for as long as possible.
Later to nursing home
The company has been working on these social trials since 2018, where the guiding principle is: what makes you tick? “I wanted to demonstrate that this approach works. Because it has to be paid for.” Financial services provider PwC is now helping its company collect data and measure efficiency so that insurers can see results. According to The, these are very promising: people with dementia are happier with this approach, feel less alone and want to die less often. “Quality of life is number one for me. But because of this approach, they also go to a nursing home later and fewer highly educated healthcare professionals are needed. This will partly solve the labor market problem in healthcare. Moreover, if people continue to live at home for a year longer, that quickly saves 50,000 euros.”
The number of dementia patients in the Netherlands is now estimated at 290,000, it is ‘the epidemic of the 21st century’. The is convinced that the multidisciplinary approach she advocates can help to better control this epidemic. She also mentioned in her inaugural lecture that she regularly clashes with the medical world. “Not with general practitioners or geriatricians; they know this. But still many other doctors say: ‘Nice such a social approach, but those people are sick, aren’t they’.” The more specialized doctors are, the more they think like that. They consider it a brain disease against which a pill should be developed. Of course they have to search for that pill, but there are more than fifty forms of dementia.” Cheered: “I’m optimistic. I must be too. In recent years, healthcare has become much more aware of this broader perspective. We are already ten steps in the right direction. However, we have to go one step further. Really seeing the other, that requires a tough culture change.”
CURRICULUM OF LIFE
Anne-Mei The (1965) born in Amsterdam
- 1984 – 1988
cultural anthropology, University of Amsterdam - 1990
researcher, University of Groningen - 1986 – 1993
law, University of Groningen - 1995 – 2005
researcher, VU University Amsterdam - 1997
publishes first book Tonight at eight o’clock. Four books follow, about nursing home care and dementia. - 1999
PhD in Medical Sciences - 2007 – present founder/owner company Tao of Care
- 2010 – 2016 lecturer, Windesheim University of Applied Sciences, Zwolle
- 2015 – 2018 lecturer, NHL Stenden University of Applied Sciences, Leeuwarden
- 2012 – 2020 endowed professor of Long-term Care and Dementia, UvA
- 2020 – present professor by special appointment Long-term Care and Social Approach to Dementia, VU