Dementia Myth No. 1: You can predict the progress of dementia

No, I’m afraid that you can’t. As I stated in my previous post, we as a society cling to the idea that dementia is simply a gradual fading out, a progressive loss of memories and self-awareness. While that’s not exactly comforting, it’s less disturbing than many of the cases that I see every day:

Confused elders whose illness has made them so anxious that they live in a state of constant terror.

Elders whose disease has made them dangerously paranoid, unable to trust anyone, convinced that everyone is trying to hurt them or kill them.

Elders who hit and bite and kick anyone who comes close to them, making it next to impossible to care for them properly.

Elders whose dementia has erased all their inhibitions, making them hypersexual. These elders make inappropriate comments. They may grope passers-by. They may make advances on caregivers, family members, you name it.

Elders who run away, again and again. They slip out through doors. They climb out of windows. They scale fences. They may wander miles and miles, for hours, sometimes even days. Each moment that they are out on their own they are in danger: of being hit by a car, of being abused, of being robbed, of experiencing a health emergency because they aren’t taking their medications.

Elders whose dementia has changed their brains in such a way that they feel an overwhelming need to engage in repetitive behaviors: They may swing their arms. They may walk constantly. They may cry out endlessly, even though there’s nothing wrong. They may ask the same questions over and over and over, or make the same statements, driving everyone around them a bit crazy.

While sometimes these behaviors start gradually, it’s common for them to begin at the snap of a finger. I believe it’s likely that this results from the physiology of many kinds of dementia. Alzheimer’s seems to be related to the build up of “plaques” that interfere with the signals between neurons in the brain. But there’s also vascular dementia—which can result from many mini strokes in the brain. There’s alcoholic dementia, which results from the damage of drinking too much. There’s dementia that results from other conditions like Parkinson’s disease. Sometimes, one of these maladies will just take out an important bit of the brain tissue, and suddenly you’ve got a behavior problem.

It can happen overnight. I’ve had patients who were charming and kind one day, then nasty and mean the next. A patient might be calm, then suddenly become inconsolably terrified or anxious. A patient may have a fairly solid grasp on reality, then suddenly come to believe that a devoted caregiver is trying to steal everything in the house, or that the hospital has been taken over by Nazis, or aliens, or unseen monsters.

Why do I think this is so important to point out? Because I believe that we all need to recognize that dementia is a dynamic, ever changing, malady. As healthcare professionals, family members and caregivers, we need to constantly be alert to changes in a patient’s behavior. We need to be willing to adjust our approach to dementia patients accordingly. We need to think nimbly, changing both behavioral and medical strategies as needed.

Dementia care is not a “set it and forget it” enterprise. It’s a day-by-day challenge. We all need to remember that.

Elizabeth Landsverk, MD

Board Certified in Geriatrics, Internal and Palliative Care Medicines House calls throughout the San Francisco Bay Area

Can Patients Remember “Sundowning”?

Recently, on an eldercare professionals group on LinkedIn, a post about a man in Indonesia who describes his “sundowning” received a lot of attention. If you have a loved one who is suffering from dementia, chances are you have seen this behavior. Often, as the day draws to a close, an elder with dementia will start to experience severe anxiety, or severe depression that we call “sundowning.” It may happen every day, or it may happen occasionally. These spells can be very upsetting, very disruptive: Patients may become absolutely terrified, or they may become miserably depressed. In the post that my colleagues were discussing on LinkedIn, the elderly man who was describing his symptoms painted a heart-rending picture of what it might feel like to experience sundowning. This description will help any family who’s struggling with this problem to have empathy for their elder. Sundowning is no picnic, not for the elder, and not for the elder’s caregivers or family.

However, I think it is far more likely that someone interviewed this gentleman as he descended into his daily sundowning spell. The man does mention that he takes notes as the sundowning comes on. He writes that the next day he has no memory of taking the notes, or of what happened.

I think this is important to point out. Sundowning is a form of delirium. It’s akin to the night terrors that sometimes beset children. When people are delirious, they have no idea what they are doing. When the delirium passes, they have no memory of how out of control they may have been.

If you’re struggling with an elder who has a problem with sundowning, try to remember that your elder has no control over what he or she is doing. They are not trying to be difficult. They’re suffering a kind of “storm” in their brain. You just have to keep them safe, and wait until it passes.

Some practical measures may help with sundowning:

• Make sure your elder has enough sleep and adequate nutrition.

• Make sure your elder has a predictable routine that that he or she is in a safe place at dusk.

• Make sure that your elder isn’t over-stimulated. All elders need engaging activities during the day, but too much hustle-bustle can contribute to anxiety.

• Make sure to eliminate any medical problems—pain, untreated conditions—that may be causing distress.

Actually, all these measures are a good idea, whether your elder experiences sundowning or not. But if you’ve done all these things, and your elder still struggles with sundowning, remember that many medications exist that can help with the depression and the anxiety. Check out the medications section on the ElderConsult website, then discuss possible treatments with your elder’s doctor.

Does your elder experience sundowning? How have you coped with it? Were practical measures enough, or did your elder need medication to relieve these symptoms? Let us know your experience here on our website in our Community Chat.