In one ofmy previous blogs, I mentioned Teun, the 22 years old Dutch graduated nurse wholived as a resident for more than one year in a nursing home for people withdementia. He wrote a bestselling book about the lessons he learned from hisroommates with dementia.
Theuncaptured way of writing seizes me and is a real eye opener for people whowork in elderly care and in particular the people who work with dementia patients.We seem to have been forgotten that working in elderly care is not aboutticking off a standardized checklist. It is about tailor-made caring, havingtime for people, and seeing them as human beings.
AlthoughTeun writes about the current situation in The Netherlands, we also can learnfrom this young expert on dementia. That’s why I want to share some conclusionsof his book with you too.
Teun putsforward that the current care system of The Netherlands is characterized by hierarchy. Almost like a military system. In times of war,it is logical and vital that one listens to the commander's orders and do thesame thing instead of starting a discussion during a shootout.But if it's your job to take care of people in a place that doesn't have anythingfrom a battlefield, what is the use of such hierarchical structures andassociated behavior? In elderly care, everybody in the organization cancontribute to caring. A manager, doctor, PT, cleaning staff, sales staff,waiter, office staff, all can help. Everyone can have a chat with one of theowners if they sit alone or pick up the rubbish off the floor when there's nocleaning staff around. This must be something you like to do for each otherwithout your job title playing any role.
Teun alsomentioned Article 25 of the Universal Declaration of Human Rights. It providesthat every human is entitled to a good standard of living, regardless of age orhealth. That means that disease must never affect people's equality.And dementia must never be a reason to be treated unequally – never! Accordingto Teun, the society and in particular the care organizations have the duty tokeep someone's self-determination for as long aspossible. If there are serious behavior problems, we must manage them withoutdepriving human rights. Only then can we put an end to the inequalities withinour healthcare system. Only then will the ‘patient’ become a resident, and thecaregiver/nurse become a guest, because that is how it should be. If we do so,we will increase the chance that residents will experience the nursing home astheir home. It is all about vision and approach. Smallscale thinking is nothing more than listening to people and creating a niceplace that makes them feel at home. Let the residents themselves indicate whatthey need. Make a home!
Anotherimportant message of Teun is: ‘let's not treat people with dementia likethey're crazy but treat them with respect’. A disease or condition does notmake everyone the same, let alone in the case of thecomplexity of dementia (what is a collection name for many variants). Whenyou see people as part of one group, you not only deprive them of everythingthey stand for as an individual, but also create a distance that will make iteasier to make decisions with negative consequences. Like for example: ‘thosepeople are sick, and they can be locked up in a department if they show problembehavior, they even don't realize it’. If you are doubting a care dilemma,replace an unknown patient for someone you love (a relative or yourself).
Onestatement of one of Teun’s roommates really catches me. ‘Life here (the nursinghome) is pointless, we don't matter anymore, so you better be really dead’. Letus, as a society, ensure making the lives of people with dementia become meaningfulagain. Make them part of society. Open up the nursing home doors and make surethat people don't feel locked up anymore. Half of the running-away problemswill be solved, because being able to leave is something else than actuallyleaving. Nobody wants to leave if they feel at home.
Teun alsowrite about an important lesson he learned while living in the nursing home.You can make contact with anyone, regardless of in what stage of dementia aperson is, as long as you take the time to get to know him or her. Open up topeople with dementia, don't judge them on their first reaction, don't goagainst them, but listen and go with them. Look what they respond to, what theylike, and adapt yourself every time. This takes time, but it will generate somuch more. Like Teun says: Only if we continue to look at people as humanbeings, they will never disappear!
In hisbook, Teun describes many familiar examples. If you want to read them all, youmust read the book, but I want to share one that is particular to my heart.People with dementia are normal people. They're sensitive to what they wear orwhat they look like, we must not underestimate that.This is something we forget in a nursing home. While the whole world isdressing according to the latest fashion trends to radiate a certain dignity, we do not seem to consider that dignity is alsoimportant if someone is stuck in a nursing home. Sleeping wear, too small ortoo large t-shirts, faded sweaters with a laundry service label on it - it'sjust a random sample of the latest nursing home fashion collection that onceagain shows how we feel about people with dementia. And here too, the solutionis simple: at least make sure that people who are locked in are not lookinglike they don't have to face anyone anymore. Let people that live in a nursinghome look perfectly groomed. Because they also have a sense of self-esteem. Ifthey prefer to walk in an old sweater, that's fine, but we can't just neglecttheir dignity.
This is notthe place to criticize all the nursing homes. I know that they are doing theirbest within their budgets and with the spare labor force they have. But I thinkwe all agree on the need for change. Because in too many cases, this is not theway we want to grow old in a nursing home. But what exactly needs to be done?An important question we have to ask ourself is, what would I want when I haveto go to a nursing home. We often come to the conclusion that we want to betreated as normal as possible, in a normal environment. We just want to get outif we want, have a nice messy room sometimes and just eat what we love. Nofences, no closed doors, no sterile floors, orover-cooked food.
Whendeveloping work processes and systems, we always strive for efficiency. But itis the question whether this efficiency concept is always appropriate inhealthcare. We are not a producer of hamburgers, but we must providetailor-made care to people who are all responding differently and copedifferently with their diseases. People who are trained in caring for peoplewill be lost into a bureaucratic mill of control force. It seems we are devoting ourselvesmore in capturing and recording everything in case something goes wrong than to prevent something from going wrong in a more human way.Because if all precious time is lost behind the computer and at the office,what could possibly go wrong?