Mark Ackerman, PA-C

By Mark Ackerman, PA

Several years ago during my Physician Assistant training, I heard this story of an elderly man with fairly severe dementia who was hospitalized. Upon admission to his room he got down on his knees and crawled under the hospital bed where he stayed and wouldn’t come out. The nurses on each shift tried to coax him out, but to no avail. Every physician, resident and medical student who came to see the patient tried to talk to him and get him out from under the bed. At one time, an orderly even went so far as to reach under and try to drag him out. But with all these attempts, he wasn’t coming out. The patient wouldn’t say a word. He wouldn’t eat or come out for food. And so for about 3 days, he stayed, laying under the bed, his hands on the bed springs as if examining every twisted wire.
Finally, a resident came to see him and made a decision, “If he won’t come out and talk with me, then I’m going to go under there and talk to him.” And so, the resident, got down on his knees and crawled under the bed with the patient to see what was going on. The resident observed that the man was lying on his back with his hands on the bed springs, moving them to and fro, inspecting and twisting each wire again and again. After multiple questions about what he was doing and offers to help him, the resident finally asked when he was coming out. The man, finally speaking, said, “Well as soon as I get this Camaro fixed. No one else is going to get under here and do it.”
Unbeknownst to everyone who went to see him, the patient had been an automobile mechanic. He was doing his job. He couldn’t be bothered with interruptions from people who wanted to chit chat or bring him food. All he wanted to do was to get that car fixed so he could move on to the next project. Finally realizing this fact, the resident changed his tact and tried to convince the man that he should take a break and they would find another mechanic to take his place. Eventually, the man got out from under the car, or bed as it were, and was able to be evaluated medically. And it only happened because someone was finally willing to meet him where he was.
When it comes to dementia, we, the friends and family members as well as medical staff all need to do the same thing- meet them where they are. This is difficult to do since what we really want, is to help them see the reality of their situation. It seems easier, at least at first brush, to think that “If I can just convince them of what is going on and how they need to see things differently, then I could help them.” This idea, of course, is a bit comical in that we forget how hard it is to even convince normally functioning people that our view of reality is right and theirs is wrong. But then again, I guess logic only gets us so far.
Another example of this is a story of my Uncle Frank. In his early 20’s, Frank was employed as a concrete worker helping to building the Spokane Airport. He was pushing a wheel barrow of concrete up a long scaffolding when at one point the scaffolding broke. Frank fell 3 stories to the ground and shattered his right leg. From then on, he always walked with a stiff leg, never being able to bend his knee; until he acquired dementia in his old age. One day, while “playing with his boyhood dog” in the living room of his home, his dog took off running. Frank jumped up to his feet and took off running down the hall after the dog. And while this is something he would never do in his adult years, his reality changed. Uncle Frank ran down the hall bending his knee as if a little kid again. He had forgotten that he couldn’t bend the knee. Unfortunately, he tore a lot of scar tissue and for the next several weeks could do nothing but lay in bed with terrible knee pain and swelling, unable to walk at all.
So, we need to talk about dementia. As everybody who has had a cognitively impaired loved one knows, this can be a really hard topic. Besides just the medical issues, there are a lot of financial and legal issues to deal with. But, from a medical aspect, there are essentially 5 different types of dementia: Alzheimer’s Dementia, Vascular Dementia, Mild Cognitive Impairment, Frontotemporal Dementia and Dementia with Lewy Bodies.
It is interesting that there are distinct differences between each of these types of dementia. While all dementia involves a decline in cognitive function; how, when and why that decline happens is what really separates each type. In some cases, the dementia is even temporary and reversible. This is especially true when it is caused by an illness. For example, depression, pneumonia, a urinary tract infection or even medications can cause a reversible cognitive impairment. It is important to understand that this reversible dementia can be the first sign of impending long term dementia. Another interesting point is that while we list distinct types of dementia, there can be a mix of dementia types and this can cause a lot of confusion about diagnosis and treatment.
We often think that dementia is a fixed problem of global cognitive impairment. The reality however is that, especially in the beginning, it is more fluid. People with dementia can fool us. They can be very lucid at one moment and not lucid in another. They can be filled with accurate historical knowledge in one moment and then can’t remember their phone number in the next. They can be their typical self at times and the next thing you know their personality has changed. All of this changing in mental status is like shuffling a deck of cards, and then mid-way through the card game, the cards get shuffled again; and this is the biggest challenge for caregivers. It is also a huge challenge in trying to treat this disease.
So how do you deal with dementia? Suffice it to say that there are not any real good treatments for dementia at this time. Most of the treatment is symptomatic and is performed by family members and care givers. So I do have some suggestions from a caregiver perspective however.
The first thing we need to do is to understand that while things have changed in our loved one’s reality, we still have to keep them oriented. Make sure they have a clock and a calendar that they can refer to. Make sure they can hear and see well. If we start handicapping demented people, their dementia will only get worse
I think the second thing we need to do is to accept that we are playing a figurative game of cards with our loved ones. The rules of the game will change when you don’t expect it, and the cards will randomly be shuffled and changed as well. You as a caregiver have to accept these changes in order to keep your own sanity. In addition, you need to know that you have an extra card up your sleeve and you should not feel guilty using it. When you play this card it gives you the power of “Therapeutic Lying.” That is you are allowed to lie to your demented loved one for their own sake. You can tell them that another mechanic is coming to work on the car. You can tell them that their car has gone to the shop. You can tell them that you have called the repair man to come fix their broken stove (even though you simply unplugged it). These are things that can have an impact on your loved one to help keep things moving in the right direction.
In the end though, I think the take home message here for helping a loved one with dementia is to “meet them where they are.” Holding your loved one’s hand and trying to understand their view of reality is likely more productive than trying to convince them that they are wrong. And, while we may feel guilty using it, there are times that pulling that card out of your sleeve is you ace in the hole. These are the best treatment options than anything else at this time.