This post is aimed primarily for family caregivers of persons living with frontotemporal dementia (FTD). However, bursts of anger or rage can happen across the dementias. In fact, there is a variation of Alzheimer’s Dementia that–behaviorally–looks a lot like FTD. The goal of this post is to provide one way of communication that may avert a rage or anger moment.
Anger and Dementia
We all get angry. At ourselves, at others, at situations. Most of us have enough brain power and insight to read other peoples’ faces and body language. And realize we just messed up. Or we were out of line. Or maybe we were justified in having the anger, but definitely not in acting out. This awareness and insight can be lost as the frontal lobe, prefrontal cortex, and other parts of the brain shrivel away. Behaviors, for the most part, are really part of the brain damage.
In Dementia Land, opportunities for frustration exponentially increase–because of the brain changes. Step into their shoes for a second:
The world does not make sense. Everyone is telling me I’m wrong…but I’m not!! I’m trying to meet my needs and live my life, but I’m constantly in trouble. And everyone is talking “at” me. All I hear is “no.” I’m not stupid and I’m not a child, but I’m starting to feel like I’m guilty of being both.
Allow me to introduce an important contributor to the dementia caregiver conversation:
Glen Davis is a prolific author of some really cool booklets that target aspects of dementia caregiving. Glen was the principle carer for his wife Carole who died in 2019 after their 20-year journey with her dementia. He cared for Carole at home until 2015 when her needs became too great for him to keep her safe. The remaining part of the blog is an excerpt from his post, “Managing the Rage Stage,” which he graciously shared with me. Thank you, Glen!
The “Yes” Technique
Some people with dementia tend to miss logical steps in a discussion. It happens because their logic circuitry in the frontal lobe is suffering intermittent faults. We notice their tendency to hear the first point of a reply and, if it is not pleasing, they stop following. The strategy we have slowly developed in response is one that seeks to keep them listening.
We try to make the first words a recognition of their request or viewpoint. Especially, avoid contradicting them.
Resist asking them to “stop it”. Try to avoid starting any response with “No” because it will stop them from understanding what follows. Instead, start every response with a “Yes”. It keeps them listening.
The “New Yes” means something different from agreement. It is a validation, saying ‘I understand your question or request’. I gave this strategy a label: “Yes, we have no bananas”.
Implementing this is not easy and takes a little practice. The best tip is to try to start each response with a “yes”, especially if you suspect any tension or anxiety in the subject.
Short, Sweet, Concrete
Avoid arguments. Avoid confrontations. Calmly look directly at a person with dementia. Even your attention is a signal of respect and openness. If you get an early opportunity to nod in understanding of the person’s message, do so.
Logical discussion, debate and argument are no longer effective communication tools when logic has become a disability in a person with dementia. Logic is no longer your friend. You will not “win” a logical discussion and you are likely to trigger a rage from frustration in the person with dementia.
You Can Be Right or You Can Be Happy
Change your attitudes or actions. The person with dementia can no longer change theirs. When we finally realize that, owing to the disease process, our loved one is incapable of being different, we then find a way to adapt our thinking. He CAN’T so WE must. Everything is up to us now. Factor him out as a helpmeet, a partner, a sounding board. He will find your insistence on involving him in things annoying. They are YOUR things. Why should he care about YOUR issues, your appointments, your feelings, your anything? Your loved one is approaching or is already entrenched in the following mindset of want/don’t want and like/don’t like.
WANT/DON’T WANT…LIKE/DON’T LIKE
Understand that this is the only thing important to him from now on. Using this mindset to your advantage is all you can depend on. Make everything about him, cater to his every want or need. Lose your personality when around him. Agree with everything that isn’t flat out dangerous.
The deeper in the disease process, the easier for you it will be to subjugate your desires to his. At first he “looks FINE to me !” That stage is very difficult for us. We tend to think he can control what he does, that he is doing these things, whatever they are, on purpose. This ‘phase’ lasts a very long time. The loved one will “look fine!” to everyone else but us for quite a while. After a certain point the disease dictates, not the loved one’s former personality, morals, ethics, or reason.
NO MATTER WHAT, ARGUING OR DISCUSSING WILL NOT END WELL
Don’t ever do it. Though it may seem like he is capable of a reasoned discussion, he is not. Keep this ever present in your mind. Listening to him while not having an actual discussion is very beneficial. In response, use frequent positive and encouraging conversational ploys but bring up nothing of substance.
LOWER YOUR STANDARDS. EXPECT NOTHING FROM HIM AND YOU WILL NOT BE DISAPPOINTED
Don’t expect your loved one to care. Don’t expect him to participate when he “isn’t feeling it.” Don’t expect him to know anything. Don’t expect empathy, humor, involvement, conversation or positivity.
‘YES. I’M SORRY YOU FEEL THAT WAY.’
Decline to be the focus of his combativeness. The person suffering a rage stage may perceive that you can do no right, even when you are trying. Remove yourself physically or verbally from the equation then the person in rage stage has nothing to fight about and no one to fight with. It renders him helpless to continue his allegations. If unable to leave, such as when travelling, keep repeating periodically: “I’m sorry you feel that way.” If you have to live in silence, that may be preferable to living with negative, angry rage reactions.
ANY SUGGESTION THAT TRIES TO DEFLECT HIM FROM HIS PROPOSED PATH WILL BE PERCEIVED TO BE CRITICISM. It is not reasonable. It is not logical. But it IS all these things to him. If you continue to suggest anything that does not wholeheartedly agree with his choices you will be the enemy. You need to avoid that at all costs.
You have a unique relationship to protect, so you should choose to deflect blame elsewhere. Some authority is responsible for the cancelled driving licence or the impounded guns. Some medical practitioner is responsible for diagnosis and medication. You take his side in discussions between you on these matters. You praise his achievements. There may come a time when you can go so overboard into praise that a normal person would gag. A person in FTD rage stage will often purely ‘eat it up’. Unless advised in advance, most carers miss the opportunity to calm FTD behaviours with praise and appreciation. By the time praise works, overpraise may be even better.
LEARN TO CONTROL THE DISPLAY OF YOUR NEGATIVE EMOTIONS
Allow only positive or neutral expressions on your face, no matter what the provocations. Know that things can escalate quickly when the loved one perceives you disapprove of an action or you are upset in some way.
A person in a rage stage will often exhibit urgency and impatience. Where you can, be ready to act on their whim. If they are ‘smokin’ their tires’, try suggesting a leisurely event. “How about we go to a movie?” Or “Would you like to have a picnic and walk the dog?” Where you cannot, use Yes We Have No Bananas : “I want to go to my sister’s NOW.” Yes, good idea. We have arranged with her that we are going for dinner on Saturday. She is a great cook. Shall we take a bottle of wine?
Making the environment safe is a must. Weapons need to be removed, knives locked up, power tools disabled or locked away. Once a carer expects or experiences a rage event, an escape plan must be created. A ‘go bag’ should be ready with some emergency cash and placed where it can certainly be retrieved, perhaps with a friend or neighbour. The carer’s phone should be backed up and consideration given to a ‘burner’ phone.
Special thanks to Glen for allowing me to repost this important blog!