Dementia and Brain Damage
About 15 years ago, I was in the midst of my internship as a psychologist in the Netherlands. I worked in a large organization with long-term nursing care, complex dementia care, and community mental health care.
One day, as I was sitting in the living room observing residents with dementia, staff, and their interactions, my eyes fell on a woman who was sitting quietly. She was seemingly in a sort of absent state. Her name was Angie. She didn’t respond to anything that happened in the living room.
All of a sudden, she stood up, holding tightly to the table, and started crying.
She looked frightened, as if something horrific was happening in front of her.
The intensity of her tears, the pained look on her face, the anxiety, and the despair chilled me to the bone
The nurse in the room, meaning well, told her to calm down and requested she sit, but Angie didn’t want to hear any of it.
The nurse, appearing somewhat frustrated, then tried to convince her and insisted that everything was okay, that there was no need to cry.
Angie refused and pushed the nurse’s hand away.
A cup of coffee fell to the ground.
It didn’t go well.
As I witnessed Angie’s heartbreaking plight of fear and sadness, a long-lost memory resurfaced.
I must have been about five years old when, nearly every night, I would wake up crying after the same recurring dream. I can still remember the feelings of loneliness and confusion as I heard my own weeping in the empty silence of the thick darkness. It was as if I was abandoned and lost.
Now, looking back as an adult, I’m better able to describe what I felt as a child. During those nightmares, what I experienced felt like being locked inside myself without any ability to escape or ask for help.
Feelings of pure loneliness, desertion, and abandonment in a never-ending silent darkness prevailed. It was my mother who would come to me and calm me down, reassuring me and staying with me until I felt safe again.
I started to realize my deepest fear.
My deepest fear is not getting dementia.
My deepest fear is also not a family member getting dementia (although this happened a couple years later; my dad developed dementia).
My deepest fear is getting dementia AND not being seen anymore. Getting dementia AND not belonging anymore.
This fear became my biggest drive, and I dedicated my work to helping people with dementia, caregivers, families, staff, and those struggling with anxiety and depression to reduce overwhelm, stress, anxiety, aggression, and depression, and to help them feel safe and connected. From this passion, I developed the Experience-Centered Care with H.E.A.R.T. Methodology™.
It turned out Angie was re-living horrendous experiences from her youth. Her old trauma re-emerged, and in that moment in the living room, it was real to her.
We discovered that we could help Angie in a way that would significantly improve her experience and wellbeing.
We realized we needed to create the right environment.
Behaviours, no matter how odd, are not symptoms of dementia. They are normal reactions to a maladaptive environment.
As Geert Bettinger eloquently describes in his book, Moving on by Standing Still, they are signals.
All of our behaviours come from our perspective, our experience.
Everything we feel, what we do, how we perceive things, our functioning, our entire experience is regulated in our brains.
The human brain is incredibly complex, but underneath the complexity hides a simple hierarchical order in which layers are built upon each other.
The first two layers, the lower and deeper levels of the brain, are involved with impulsive, intuitive, emotional, and behavioural responses. These parts of the brain, already developed by the age of three, are often referred to as the “emotional brain.”
The higher and more complex parts of the brain are involved with complex thinking, planning, reasoning, decision making, the ability to see the bigger picture, insight, and orientation of time. These are fully developed by the age of 25. These layers of the brain are often referred to as the “thinking brain” or the “cognitive brain.”
All of us, as human beings, need a sense of safety, connectedness, and meaning or purpose.
As soon as we feel uncomfortable, nervous, anxious, or threatened, we feel unsafe. The emotional brain is in action, and the amygdala plays an important role. It is the part of the brain that scans the environment to check for danger in order to keep us safe. If the amygdala senses danger, the fight-or-flight response gets activated, and we experience anxiety and stress. We then also use the thinking brain to make sense of many factors in our environment. We do this with the help of the memory.
With Alzheimer’s disease, the higher-functioning brain layers are increasingly damaged, and functioning relies more and more on the emotional brain.
The emotional brain is the part that works together with the nervous system and regulates the fight/flight/freeze system in the body.
The problem is that if the thinking brain is not fully available anymore, like when some memory systems and complex parts of the thinking brain are damaged, different environments and situations can be easily perceived as threatening or scary.
The person becomes anxious, agitated, or stressed, and the fight-or-flight-or freeze response is activated more often. With a changing brain, the perception changes also.
This is why it’s necessary to create an environment that is safe, pleasant, and familiar, matching the old memories that are still available and including the right stimuli. When the person does not experience stress and anxiety and instead experiences safety and connectedness, behaviours and moods are calm.
Safety and connectedness are created by setting up the right environment.
Our environment plays a major role in feeling safe and whether the people around us make us feel safe, as assessed by the deeper parts of our brains.
A warm, gentle and co-regulating approach is essential for people with dementia.
However, this is not enough. If we don’t pay attention to creating the right environment, we will still miss the mark, and people with dementia might still feel a sense of unsafety or threat, or they may have other disturbing internal experiences.
Here’s the thing:
Our brains need stimulation. This means that human beings cannot do well without a sufficient amount of stimulation. This is why solitary isolation is one of the most feared punishments; it is a horrendous experience for those who have to endure it. It is often considered inhumane for the same reason: our brains cannot handle it.
Research has shown that the emotional brain can only process dynamic stimuli. This is everything that stimulates the senses, such as sounds, visual movement, touch, scents, taste, and the ability to feel your body in space. The thinking brain is able to appreciate and process static stimuli (books, photographs, paintings).
As dementia progresses, people rely more and more on their deeper brain parts, the emotional brain, and therefore rely on dynamic stimulation, as they can no longer process static stimulation.
If there is not enough dynamic stimulation available, the person’s experience is comparable to solitary isolation.
It is time to stop tolerating deprived environments and provide people with humane treatments.
Dynamic stimulation is not a luxury; it is an essential requirement for meeting basic human needs.
This is why I fully support Lark Angels in their mission and purpose to fulfill this important requirement.
Nadine Jans is a registered clinical counsellor in Canada and a psychologist in the Netherlands. She has gained over 15 years of experience helping individuals with dementia, family caregivers, and professionals with depression, anger, overwhelm, and complex situations, to significantly improve their relationships, behaviours, and moods.
In her work as a research participant at Zuyd University in the Netherlands, she co-created a handbook for clinicians to increase participation of people with dementia in health care.
After years of work and study, she discovered powerful strategies, insights, and tools, which led her to develop the Experience-Centered Care with H.E.A.R.T. Methodology™, a cutting-edge, step-by-step framework that enables people with dementia, family caregivers, and professionals to significantly improve behaviours, moods, and relationships and experience more inner calm and meaning.
Her work reached a deeper level after receiving training from Dr. Daniel Nightingale, PhD, in hypnotherapy for people with dementia, and she is now seeing even more powerful results in helping individuals with dementia find more calmness, meaning, and joy in their lives.
Nadine has personally experienced how life is affected when a close family member develops dementia, and she is on a mission to end the overwhelm, guilt, loneliness, and frustration for individuals and families living with dementia.