"Doc, I'm worried I'm getting Alzheimer's." I hear this very frequently when I see patients or speak in public about the disease. Sometimes the fear is for someone else, as in, "My husband doesn't seem like himself recently..." It's always a fraught conversation, but especially when the person asking is a frightened 50-something -- the time of life when many people begin to feel their own mortality.
So how do I respond? First, as a physician, with understanding. The prospect of Alzheimer's disease or any dementing disease rightfully commands a sort of frightened respect. A 2011 poll by the MetLife Foundation found that Alzheimer's disease was the most feared disease, after cancer, among those 55 and over. Next, as medical officer for the American Federation for Aging Research (AFAR) and someone who believes strongly in the power of biomedical research to improve the lives and health of all people, particularly older adults, I try to offer honest and evidence-based clarification to put fears in perspective. Here's what I tell people.
Forgetfulness is SELDOM an early sign of dementia or Alzheimer's.
Many worried people can take comfort from the fact that a certain amount of age-related memory loss, especially of people's names -- that aggravating "it's on the tip of my tongue" feeling -- is normal and is not a warning sign of dementia or Alzheimer's disease.
Earlier this year, neurologist Scott Small, M.D., Ph.D., a Beeson scholar and recipient of a Hartford/AFAR Collaborative Research Award, published direct scientific evidence of the neurological difference between memory loss and Alzheimer's. This work, conducted with Nobel laureate Eric Kandel, M.D., also suggested the exciting possibility of future treatments for age-related memory loss.
"Our study provides compelling evidence that age-related memory loss is a syndrome in its own right, apart from Alzheimer's," says Dr. Small, the Boris and Rose Katz professor of neurology and director of the Alzheimer's Research Center at Columbia University Medical Center. "So every time you forget where you put your keys, it does not at all mean you're on the way to Alzheimer's."
Their research identified 17 genes in the dentate gyrus section of the brain that can malfunction, including one in particular that produces an important memory-related protein. By transplanting healthy versions of this gene into older laboratory mice, Small, Kandel and their team showed that this type of memory loss is actually reversible. "It was remarkable -- if you just manipulate this one molecule in this particular area of the brain, you now have an old mouse that looks very much like a young mouse," Small says.
Small and his team also showed that age-related memory loss occurs in a different part of the brain from Alzheimer's and, unlike Alzheimer's, is not characterized by widespread death of neurons in the brain.
When it comes to diagnosing dementia, age is not just a number.
For anyone concerned about dementia or experiencing symptoms, age is an important factor in making an accurate and actionable diagnosis.
Alzheimer's is primarily a disease of older people. If you or the person you are concerned about is under age 75, it is very unlikely that your symptoms indicate Alzheimer's disease. Please note, however, that I did not say that it is impossible: "Early onset" dementia does happen, but only to about 4 percent or less of the roughly 5 million American who have received a diagnosis of Alzheimer's.
What should not worry you.
I never dismiss anyone's fears, but I also consider the source of the information carefully, and take most seriously reports from a spouse or other close family member. A spouse is going to know something's wrong before anyone else, including any geriatrician.
Here are some commonly-voiced complaints that often come with age and do NOT generally concern me very much:
- Forgetting words or names, temporarily;
- Misplacing the car keys;
- Occasionally forgetting why you are doing something (Why am I in front of the refrigerator? What was I looking for in the basement?);
- Worrying about your memory;
- Experiencing symptoms that come on quickly and suddenly. (Alzheimer's does not start or worsen overnight. But be aware that if symptoms are severe, you get checked anyway, for other possibilities such as delirium, brain tumor, or acute medical illness.)
Malaz Boustani, M.D., MPH, another Beeson scholar, associate professor at Indiana University School of Medicine, and research director of the Healthy Aging Brain Center, sums it up this way:
There is a saying that it's normal to forget where you put your car keys, but if you forget what your car keys are for, then you should be concerned that you might have the beginnings of Alzheimer's disease.
(Dr. Boustani also emphasizes that, if you notice a family member becoming confused during an acute illness, it is important to get an evaluation for cognitive problems, once the acute illness has passed.)
Signs that DO merit concern
Here's some of what I do listen closely for:
- Forgetting entire events, or important conversations;
- Repeating things, not for emphasis but over and over for no reason;
- Making major and repeated financial mistakes;
- Having no awareness that there is any problem with memory.
The Alzheimer's Society offers excellent consumer tools and resources at its website, and suggests additional warning signs, including:
- Forgetting recently learned information;
- Difficulty making plans, solving problems, judgment, decisions, or self-care;
- Getting confused about where you are or the year or day;
- Certain types of vision problems, including not recognizing yourself in the mirror;
- Major changes in personality or mood, including becoming withdrawn.
Not all dementia is Alzheimer's disease.
This is important because it means that even very real symptoms of dementia could be signs of something besides Alzheimer's. Two out of three people under age 45 with signs of dementia, for example, will have something other than Alzheimer's and should be carefully evaluated, because some of these other causes are treatable. It could be:
- Vascular dementia caused by inadequate blood flow to the brain. There are some modest treatments and, it is often possible to limit further damage;
- Fronto-temporal dementia. Most common between the ages of 45 and 65, it is caused by the death of nerve cells in certain areas of the brain. Presently not curable.
- Dementia with Lewy bodies, which can cause hallucinations and Parkinson's-like symptoms, such as tremors. Presently not curable.
To test or not to test
All this leads to another frequently asked question, which is harder to answer: Do I need to get tested? Here the answer differs among individuals: for people of different ages, with and without symptoms, with or without a genetic or family risk factor.
There are many different types of tests (with different costs and levels of insurance reimbursement), from simple low-tech quizzes administered in a doctor's office to much more involved procedures such as PET or MRI scans of the brain or spinal taps to search for biomarkers in spinal fluid. But the real problem is what to do with the answers, in part because we have such poor, even primitive treatment options to offer people who have or face the likelihood of Alzheimer's disease. As a clinician and researcher, I feel considerable frustration about this.
Still, while there is no single or simple answer to the testing question, in general my feeling is that it is better to know than not to know. Certainly for anyone with meaningful warning signs, testing is definitely worthwhile. If you have a genetic predisposition, opinion is divided, but again, I still believe it is better to know what you're up against. You may find a very different, potentially treatable or controllable cause. If you do not have active symptoms, or a genetic predisposition, or if you are under age 75, you can probably safely hold off, as the U.S. Preventative Services Task Force also recently recommended.
There is another reason to consider testing, one that is almost totally selfless in nature. Those who do choose to get tested are helping advance the research effort to understand this dread disease and find treatments and, ultimately, either a cure or, even better, prevent its occurrence entirely. Because of the growing belief that Alzheimer's may cause irreversible brain damage, prevention is paramount, and the only way to test possible interventions is on people who have a good chance of developing the disease but don't have it yet. The Alzheimer's Prevention Registry is a federally funded research project run by the Banner Alzheimer's Institute in Phoenix that offers education, advocacy opportunities, and, for some people, the opportunity to participate in studies, but with no obligation. I would never pressure anyone to do this, but in the face of a rapidly growing epidemic, with so little to offer today's patients, joining the research effort is a way to fight back and anyone can help.