‘Unfortunately, our help has come too late. Mrs. Maat died as a result of dehydration, general debilitation. She has fallen into a coma. Further investigation into her cause of death will not take place, as will many others who die in this way.
But we know the cause of death all too well, a painful realization that has been giving me severe abdominal pain for 2 days: a total lack of skills and knowledge in dealing with people with dementia. As painful as it may be, in far too many cases this amounts to life or death.’
This excerpt comes from the personal story ‘Rest in peace Mrs. Maat I’m sorry, our help is coming too late for you’ by the elderly psychologist Sarah Blom, which she recently published. It is about a woman with dementia who refused all help and did not want to eat. She said ‘no’ to everything. Her caretakers had their hands in their hair.
Overall attenuation
The patient became ‘that aggressive woman’ that was out of reach. At a certain point, Blom notes, she had been ‘in bed for 21 hours without food, drink, medicine and care’. But yes, the patient’s own choice, that had to be respected. She died ‘of dehydration and general debilitation’.
Blom: “That ‘no’ was understood as: ‘I don’t want to drink’. But it actually meant: ‘I don’t understand your question’.”
Her “inbox exploded” after the story was published, she says. “1.4 million people have read it. This example is no exception. Everyone in healthcare recognizes it,” she tells RTL Nieuws. Care providers recognize themselves in Mrs. Maat’s story. The Alzheimer Nederland and Nursing and Caregivers Netherlands also see the problems (see boxes later in this story).
Contrary to the ideal picture, caring for people with dementia is often difficult and frustrating. Many caregivers start with unrealistic expectations and too little knowledge. It is precisely because of this that the situation often gets out of hand, is the firm conviction of Blom, who as a consultant gives advice to these types of care providers.
Ideal picture is wrong
The fact that healthcare providers get stuck is the rule rather than the exception, according to Blom. We rarely get to hear that. That has to change, she thinks. This is one of the reasons why she published the story about Mrs. Maat.
According to her, an important cause is ‘the ideal image’. Healthcare is facing a serious shortage of staff. In order to recruit new forces, the sector sends out an ideal picture into the world. “You know them, the photos of carers with patients. The arms are tightly wrapped around each other. Everyone is smiling happily. Come on, the care for these people is fantastic!”
Unrest without structure
Unfortunately, that is a rather one-sided picture, she thinks. “The care for people with dementia is in a difficult, worrying phase. The training is falling short. The policy is increasingly aimed at ensuring that everyone retains control over their own life. The Care and Compulsion Act stipulates that people must agree themselves with a certain restriction of freedom. But people with dementia often can no longer do that themselves. So you have to respect their wishes.”
While, according to Blom, people with dementia actually benefit from structure. “Just like autistic people, for example. When boundaries and structure disappear, they become anxious and restless.”
At the same time, people with dementia are exhibiting more and more deviant behavior, says the psychologist. Stronger behavior too. “You are called a whore. People can be sexually disinhibited and touch you. Some want to eat all day, others refuse to eat. One wants to go to the toilet fifty times a day, the other not at all. There is physical aggression. “
Healthcare providers completely overwhelmed
Informal carers and care personnel are not sufficiently prepared for this situation. “They are usually completely overwhelmed by it. At school they mainly learn technical actions. But they don’t know how to deal with difficult or extreme behavior. Then you block.”
“I see it myself almost every day,” says Blom. “It happens more often than you think. I play the theater performance Dag Mama, which is about the care for these elderly people, throughout the country for caregivers and care professionals. Hundreds of people approach me and say: ‘Finally someone who understands’. : ‘I learned more tonight than during my entire training’.”
Response Julie Meerveld, Alzheimer Netherlands:
“We recognize the picture that Sarah Blom paints and we strongly agree with her. It is very important that carers and nurses who work with people with dementia actually know how to deal with the complex behavior that people with dementia can show.
This applies to the current group of employees who need better training on the job, but also to future employees. It is crucial that dealing with people with dementia becomes a permanent part of the curriculum of the training for carers and nurses.
In addition, it should be possible to work in a more person-oriented way in the nursing home. Every person is different and deserves the treatment and care that suits him or her.”
An additional problem is that it is ‘almost impossible to name’, notes Blom. “Of course it is just problem behavior, but you can’t say that anymore. You have to call it misunderstood behavior these days. So then you, the carer or nurse, are the one who doesn’t understand it. Then you place the responsibility very much on them. “
Stress in caregivers
And so the world of people with dementia and the world of their carers are drifting further and further apart, she believes. All parties are victims. The person with dementia receives insufficient quality care, the caregiver suffers from tension and stress, and care personnel seek refuge elsewhere, which further increases the workload. “While they are often so good at their job. They just want to mean something to other people.”
“And don’t forget”, emphasizes the psychologist, “caregivers are often vulnerable people themselves. We don’t think about this enough. Many struggle with issues such as abuse, abandonment and childhood wounds. They crave recognition and comfort. But people with dementia often lose their sense of empathy. They can often say very hurtful things. That frustration adds to it.”
There is no simple solution, Blom acknowledges. “More money must be made available for training. Training that is in line with practice. Because a lot of knowledge does not reach those people, and that is a shame. And: also name the problems. Because it can be a nice profession, but only if you recognize that it also has ugly and painful sides.”
Response of the nurses’ interest group
“The big problem is that there are more and more people with dementia and fewer and fewer staff,” says Thijs den Otter of Vervangers & Zorgenden Nederland, the association of nurses.
Den Otter emphasizes that it is heavy work that is underestimated. He indicates that research shows that staff has a great need for further training and to receive more lessons in how to better understand the behavior of people with dementia.
According to him, people with dementia are being admitted later and later. Then patterns are already ingrained and it is more difficult for staff to understand them. “There is not enough time for this now.”
There are also many changes in personnel, which does not make contact any better. He does not immediately see a solution to the problems, but a budget for training would be a start, according to Den Otter.