I hear that question a lot. Doctors also hear a variation of this confusion. “It looks like dementia,” they might tell a patient, and he or she (or a family member) replies with relief, “Whew! At least it’s not Alzheimer’s!”
Alzheimer’s IS dementia. Other things can be dementia, too. Dementia is an umbrella term used to describe a group of symptoms and behaviors caused by brain changes that interfere with daily life. Alzheimer's is by far its leading cause. Think of it like this: Just as dogs are one type of pet, Alzheimer's is one type of dementia. So you can describe someone who has Alzheimer's also as having dementia, just the way if you have a dog, it can also be said that you have a pet. But others have other types of pet, like cats or birds (or in the case of dementia, a different form of dementia from Alzheimer's, like vascular dementia or Parkinson's dementia).
What’s in a name, anyway? Does it matter what we call this brain-wreck of a disease?
And often not as much as you might think.
Millions of us never find out exactly what’s causing Mom to start cursing or a diligent husband to forget to pay bills. Even after memory loss and cognitive glitches become impossible to ignore, families don’t always seek (or receive) an official diagnosis. We just deal with the effects.
Here's what really matters in the dementia name game:
First distinguish between “normal aging” and “something’s not quite right here.”
When he was younger, my son misheard “Alzheimer’s disease” as "old timer’s disease." He's not alone. Nearly 60% of people in a 2014 Alzheimer's Association survey mistakenly thought Alzheimer's is a natural result of aging.
It’s true your odds of Alzheimer’s do increase with age. It’s also true that thinking skills can slow in some ways with age. But it's not inevitable; not everyone develops dementia no matter how long they live. The biomarkers associated with Alzheimer's seem distinct from normal brain aging. So if there are curious symptoms going on, something's not right.
Definitely explore the cause of worrisome symptoms.
In some ways, it’s as important to know what the problem isn’t, in order to rule out or treat possible causes that we know how to fix today. For example, dementia symptoms that are caused by delirium, dehydration, vitamin deficiencies, and even some brain tumors resolve when the underlying problem is addressed. Among older adults, especially those who live alone, depression often leads to cognitive impairment.
There's yet no single test to diagnose Alzheimer's disease or the other major types of nonreversible, degenerative dementia, which include vascular dementia, frontotemporal dementia, and dementia with Lewy bodies. Confirmation with 100 percent certainty can only be made by examination of brain tissue after death. But by using tools including taking an extensive history, tests of cognition and function, and process of elimination, doctors currently claim high accuracy rates in making a clinical diagnosis (95 percent accuracy for "probable Alzheimer's").
Be aware that knowing exactly which degenerative dementia it is won't lead you to a cure.
Beyond these basic diagnostics, some families, mine included, never go the exhaustive (and often expensive) neuro-testing route for older loved ones.
It's an individual question. But whether your mom has Alzheimer’s or another type of irreversible dementia, there are no nutritional cures to be had. No medicines yet reverse the course of disease. Existing therapies can improve some functioning and quality of life, for awhile.
But knowing the precise diagnosis isn’t going to make Dad remember how to pull on his pants or keep your wife from wandering away from home and getting lost.
Exception: Researchers (rightly) care about names
One group that's most interested in precise nameology is scientists, in order to classify subjects for research purposes. By better identifying brain changes, researchers can gain more accurate insights into how drugs or other therapies work.
In the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition), the 2013 update of the diagnostic manual used by mental health professionals, the official name for dementia was changed to major neurocognitive disorder and mild neurocognitive disorder. Most doctors and laypeople still just say "dementia," though.
Some also believe that a descriptor like major neurocognitive disorder carries less social stigma than the feared words dementia (and its kin, demented) and Alzheimer's. Over in China, there’s growing support to change the symbol of dementia, which is currently represented by two characters that translate to insane and idiotic. In 2004, Japan switched from characters that toughly stood for crazy person to those meaning brain disease. Net result: Less stigma, more openness to treatment and support.
What really matters: Find out what to do about it.
So what if you’re left some kind of “major neurocognitive disorder”? Whether it’s called Alzheimer’s, dementia, or old timer's disease, the real question is, “What are we going to do about it?”
That’s where you can’t get enough practical information and emotional support — also called Help.
The truth is, the progression of decline for non-reversible degenerative kinds of dementias like Alzheimer's, tends to be much the same, whatever the type. Many symptoms and care needs remain the same. There are stages of continuing decline, and an increased need for support in managing everyday life.
Important exception: Some behavior challenges and limitations are more common within particular types of dementia. For example, frontotemporal dementia, which can strike at a younger age than Alzheimer's, features more loss of impulse control, empathy, and sound judgment, and less memory loss. Lewy Body dementia can cause more visual hallucinations.
That's useful to know, even if you aren't sure precisely which dementia your loved one has. My father-in-law's behavior so puzzled my husband and me that we were almost in denial about a connection to dementia, even though we both have professional experience in this area! He could carry on a long conversation about the Pittsburgh Pirates that involved pretty impressive working memory—their current ranking, which players were injured, whether the upcoming series was home or away. One morning at breakfast, after half an hour of patter like that, he added without skipping a beat that he had a problem: "I'm getting married today and I don't have anything to wear."
For the next few hours, he sat outside in his boxer shorts, waiting for an imagined suit to be delivered. As he was in his 90s at the time, we hadn't pursued exhaustive testing, though a prior MRI showed evidence of small strokes (which are linked to vascular dementia). Eventually it was clear his symptoms also matched up to those of frontotemporal dementia, and having an understanding of it helped us be more empathetic and knowledgeable about how to respond—and a lot less freaked out.
(More cases of dementia are probably of "mixed" cause than was previously believed, it's now thought, adding to the name-game muddle.)
Because every person is different—and it's often impossible to know exactly what's happening, biologically, inside a given brain—you may well encounter a baffling and frustrating array of specific symptoms.
My book Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers details the different types of dementia and covers dozens of common behavior challenges that often result. You'll find out WHY these situations happen, and many very specific tips you can TRY in order to avoid them or respond to them in ways that preserve calm and cut everybody's stress.
Have a dementia-care question? Send it to Ask Paula at firstname.lastname@example.org.