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This disease is a topic of interest to everyone: There is no cure. And it is always fatal.
Known formally as major neurocognitive disorder, dementia is an umbrella term for neurodegeneration that causes cognitive decline—deficits in memory, language skills, problem solving and other higher brain functions.
Although it has a variety of causes, in each case, the end result is the same. Chemical alteration poisons the cells of the nervous system, including brain cells. As the disease progresses, healthy brain tissue becomes scar tissue, and brain function is impaired.
Here are some answers to a few commonly asked questions:
Are dementia and Alzheimer’s disease the same thing?
Not exactly. Alzheimer’s causes dementia—in fact, it’s the most common cause, accounting for about 80 percent of cases in the U.S.
What else may cause it?
The second most common cause is vascular disease, usually from uncontrolled blood pressure or from blocked vessels causing strokes that kill brain cells. Less commonly, it can result from lewy bodies—abnormal protein deposits that poison the brain. It can also be associated with certain kinds of Parkinson’s disease. Infections like HIV and syphilis are potential causes. Thyroid problems, anemia and vitamin deficiencies may contribute, too. Drugs can play a role, both prescription and recreational, including alcohol. Trauma and chemical exposure are in the mix, too.
It definitely has genetic components. We know that the Apolipoprotein E (APOE) gene is involved. Every genetic trait in humans is the result of having two copies of the gene in your DNA. Having a pair of APOE genes increases risk up to four times. But we can’t use APOE for genetic screening, because some people with multiple copies of the gene never actually develop the disease.
We also know the risk of developing Alzheimer’s-related dementia is higher if an immediate family member is diagnosed. But age remains the greatest risk factor, more so than family history.
And it could be a one-two punch—a combination of genetics plus a trigger event, like a viral infection, that inflames the nervous system. We learn more every day, but we don’t yet know the full story.
Can people be tested for it?
Unfortunately, no definitive test currently exists. We can’t see it on X-ray or find it with a blood test.
How do you approach diagnosis?
First steps are to rule out and address any possible masquerading diseases. The big one is depression, which can present with apathy and memory deficits. We also check thyroid function and test the blood for anemia or vitamin deficiencies. We look for existing neurological diseases, like Parkinson’s.
A CT, or better yet, an MRI, scan of the head can uncover physical abnormality—though rare, the disease can be associated with malformations, tumors, inflammation or abnormal fluid pressure in the brain.
Once we rule out other causes, a diagnosis relies on the patient’s history of new or worsening deficits. However, it’s not uncommon for a patient to be unaware of his or her decline.
We also apply a variety of cognitive tests. Some are exceedingly simple, but can really tell the story, like the coin test. I’ll ask, if you have a quarter, a dime, a nickel and a penny, how much money is that? It’s a really useful test, since it involves several aspects of brain function, like visualization, recall, calculation and interpretation.
Other than forgetfulness, what are some signs and symptoms?
It’s important to distinguish the degree of forgetting. We all slow down as we age, that’s normal. But there is a real difference between a “senior moment” and true impairment. With normal aging, it might take all day to remember a fact or a name, but at some point, most people will retrieve it. However, when the disease has damaged that memory, that fact or name is gone forever. We have all forgotten a word, misplaced the keys or the wallet. But when they’re repeatedly lost, gone for months or lost forever, that’s highly suspicious.
The illness interferes with executive function—everything our brains need to do beyond keeping us alive: attention span, short-term memory, inhibition, problem solving, and keeping track of time and space. This is why the patient can have difficulty managing a calendar, balancing the checkbook or navigating while driving.
There is no treatment for dementia. Dr. Cesar Torres recommends a focus on quality of life and living each day to the fullest. https://bit.ly/33NcR12 via @MedStarWHC
A first symptom I frequently see is apathy—for example, a golfer who absolutely loved the game suddenly gives it up, saying they just don’t feel like playing any longer. Other personality changes are typical. A patient may become irritable or combative, or resist eating or bathing. Loss of inhibition is also common—for example, the patient may say whatever is on his or her mind, even when inappropriate. We often see paranoia increase as the disease progresses, often manifesting when something is misplaced and the patient is convinced it was stolen.
What are the treatment options?
Doctors live to help others, so we find this disease to be among the most frustrating since we have no effective treatment options. The medications that target it do not halt neurodegeneration.
Think of the nervous system as a collection of electrical circuits. The disease shorts the circuit, and medications can temporarily rewire the system to keep the current flowing. But then more circuits short out and so on and so on. The results of successful treatment with the medications are not robust, maybe just a few points of measured improvement over the course of six months or a year.
Without a targeted treatment, we focus on quality of life. The diagnosis is hard on the patient and the family. My colleagues and I spend a lot of time counseling them, to prepare them for the road ahead and support their well-being through the journey.
Can it be prevented?
We have no control over certain components, like genetic predisposition. But we have solid evidence that taking good care of yourself can keep your brain in good shape in later years. That means staying active, eating well, avoiding tobacco and excessive alcohol consumption, getting enough sleep and protecting your head from injury when engaging in sports or other high-risk activities. Education, socialization and mental stimulation are important—a more active brain has more neural pathways.
Exercise is probably the single most important factor. I recommend 30 minutes to an hour of moderate exercise, most days of the week. Exercise increases blood flow and releases endorphins that create a sense of well-being and improves metabolism. The benefits are virtually endless. It doesn’t have to be elaborate, walking is fine. Even into your 80s or 90s, there is a routine for you—like chair exercises or Tai Chi—which really helps with mental acuity, although we don’t know exactly why.
What advice do you have for families?
Go easy on the patient and yourself. You’re likely to get frustrated or angry. That’s perfectly normal. There’s no need to feel guilty about it. This is a one-day-at-a-time endeavor and it’s important to realize that you will have good days and not-so-good days.
It’s easy to get into a battle with your family member. It’s bath-time, but she doesn’t want to. Or breakfast is ready, but he’s not hungry. Take a step back. Don’t rush into an argument. Try the bath later in the day. Let him eat breakfast whenever he wants. Flexibility and having realistic expectations are key, both for you and your loved one.
Have some meaningful discussions about the future—finances, living arrangements and advance directives. As the disease becomes more debilitating, the family is faced with very difficult decisions. The situation becomes easier if the patient provides guidance before it’s too late.
Is there any good news?
I believe there is. Although the disease is progressive, it is typically slow—eight to 12 years. Most of us live with the belief that we have time to get things done. In reality, that’s an illusion—as was graphically illustrated for many families during the COVID-19 pandemic. As heartbreaking as the diagnosis can be, I help my patients and their families see it as an opportunity. It shatters the illusion and can inspire people to live each day to the fullest and do all the things they’ve wanted to do.
As baby boomers hit their golden years and with life expectancy at record levels, the coming “gray tsunami” has the potential to bankrupt the healthcare system. That has given medical science enormous incentive to develop weapons against this disease. The volume of research is unprecedented and inspiring—a true example of human energy focused constructively.
Even though we have no treatment today, there’s always the chance for a breakthrough tomorrow. Someday, we will be able to alter how we age. For the sake of all my patients, I hope that day comes sooner rather than later.
The Hospital Center offers state-of-the-art clinical services for individuals affected by Alzheimer’s disease and related disorders, and our doctors conduct research aimed at improving treatment options. We also have many resources in place for individuals and families coping with these issues, including trained and experienced social workers, visiting nurses and a support group.
We are here for you and your loved ones.