Hallucinations: Real or Imagined

Today was just another day, trying to help a family navigate the complexities of a dementia diagnosis. Advocating for the patient who is stuck in a world where he is frightened and yet our world continuously ignores this because we know it's not real. But is it? Yes to the patient who may or may not have the formal diagnosis of dementia, who doesn't understand why their family is stealing their money, who doesn't understand why people are coming after them, why people are trying to kill them, why there is a certain annoying scent which they are sure is a poison being blow out into the air, to the bugs that one sees crawling on their body, to the people in the room, the voices, assuring them that in their world these are all very real! Yes to the patient who goes running out of their home to escape, to run for their lives, it sounds dramatic I know but to them it is very real, this is their reality.

Doing what I do everyday, I am around dementia a lot. I see a lot of medical professionals that need a lot of education. I used to be one of those professionals, simply because we are not taught enough how to manage the complexities of dementia. I see a community that is dropping the ball, I see a stigma where people are afraid to talk about Dementia. Today, I am hoping to change that , to give you a new look on how you view the hallucinations that a person suffering from dementia lives with. I do this in hope that as you treat that next patient, as you counsel that next family, that you take 10 minutes to stop, listen and imagine. Put yourself in the shoes of that patient. If we only put together a protocol that would help with early detection, early intervention we could significantly reduce the chaos that comes with this diagnosis. We always say, the patient with dementia can't live in our world, and we say this because our world is too face paced, has too many expectations, causes stress, agitation, fear yet when we create a safe space where they can function at their own level, with others who are like them, a world where we can promote calmness by removing the expectations that they feel in our world, where we remove or reduce the fears they do very well in " their" world.

Our job is to make them feel safe in "their" world and we are failing miserably. We need to do better. Imagine if you were walking in a dark alley, and you heard footsteps behind you, you know someone is there, your heart rate increases, your hearing intensifies, your eyesight, you may begin to sweat, you have activated Flight or Fight. This person is coming after you, had this been a case of aggravated assault, the police would have been called, the patient, the victim nurtured and cared for, and supported so they were made to feel safe and not alone. Enter the dementia patient who is suffering from hallucinations, delusions, made to feel crazy, alone, not supported because the person standing in front of them knows this isn't a real threat, very little if anything is done to help alleviate those fears. Maybe we wait a couple weeks a few months to get to the bottom of it. I ask you if you were that person in the alley, or the person that suffered from a violent attack would you want to wait weeks. months to get help? Of course not! So please tell me why we think it is ok to do this to our dementia population. They are scared. In return they become more agitated, moody, verbally or physically aggressive and many times we administer the wrong type of medication for the situation. We need to ask " Are we treating the behavior or the cause?" If we treat the cause the behavior will likely improve on it's own, if we treat the behavior, we risk bringing on the cause as a side effect of the withdrawal of that medication. Indeed it is a tricky balance, and we always want to use the lesser to obtain the greatest response. However, our evaluations of treatment need to be clearer. What is our desired outcome? That the hallucinations stopped? Or that the patient became less combative? Again, using the cause vs behavior theory. We need to find the cause of the hallucinations, not just put a bandaid on it, send the patient home only to have a repeat the next day. We need not make our families feel like they are alone to figure it out. This is scary, it is emotional to watch our loved ones be in such a complicated state. We are the professionals, it is our job to embrace the patient and the family to give them the education, resources, and the support they need to make some very difficult decisions. We can not check the wandering combative patient for dehydration, a UTI, head injury, and when all negative discharge them home and hope they figure it out.

It is time, it is denial, shame, guilt and a whole slew of other emotions however if we address the elephant in the room, if we take the time to do a thorough assessment of what this patient's world looks like, where they are struggling and if we identify those who are having hallucinations and we intervene earlier, with the proper class of medications, maybe we can reduce the amount of elopements, maybe we can make the patients who are fearful of their environment feel a little safer in " their" world. Diagnosis takes time, its a label folks, we gotta stop treating the labels and treat the person. Isn't that what healthcare is about? To heal? To manage what's broken? The patients are not numbers, quotas, research rats, they are not dementia, they are people, just like you and me and they are scared. We need to do better at providing them a safe headspace to live in.

The patient I described to you above was diagnosed today with "possible" early stage dementia. These hallucinations which have caused the patient to elope 2 x in a week and to have 2 other attempts is absolutely not in the "possible" early stages of dementia. The patient Is fairly independent in his ADL's. Many times people with dementia are but that doesn't mean they can sit down and make a sandwich or balance a checkbook.The brain is complex with many different rooms, and we are never exactly sure which room has the light on and which room has the lights off. This is why we say everyone's dementia diagnosis is unique however their are many similarities and we need to start addressing those early on, getting interventions on board before the patients are running out the front door, trying to get away from the man in the alley, and endangering themselves over and over again.

Ruthie Barkus, RN, BSN, CDP, CPRS.