The Case: "Thank God It's Not Alzheimer's!"
"How're ya doing, sweetheart?" boomed Mr. D. when I walked in to see him. This likeable 79-year-old had come in with his wife for a scheduled follow-up visit, so we could check on his high blood pressure, diabetes, and chronic back pain. He was feeling pretty good, and they didn't voice many concerns during the visit. Yet as they left the room, his wife pulled me aside. "I didn't want to say anything in front of him," she whispered, "because he gets mad when I mention it. But I think his memory's getting worse, and he's been making mistakes when he writes checks. I'm worried he might be getting Alzheimer's. Can you get him checked out?"
When our memory clinic completed its evaluation several weeks later, the results confirmed the wife's hunch. Mr. D's testing had shown real problems with memory, concentration, and the ability to carry out more complicated mental tasks. No cause of reversible memory problems was found. But his test results were judged "atypical for Alzheimer's disease," since Mr. D had fewer problems with words than expected. The report concluded that Mr. D's testing was "consistent with a diagnosis of dementia NOS," or dementia "not otherwise specified."
As I shared these conclusions with Mr. D and his wife at their next follow-up visit, the older woman looked relieved. "Thank God it's not Alzheimer's!" she exclaimed.
"Yes, but it's dementia," I answered, still trying to break the bad news.
Both Mr. D. and his wife looked confused. "What's dementia?" they asked.
The Challenge: A diagnosis that's often hard to pin down
Every year, thousands of families notice that problems with memory and thinking have affected their loved one. When the problems become significant enough to interfere with daily life, doctors call this dementia.
Dementia is a funny term because many people refer to it as if it were a disease, but it's more accurate to call it a syndrome: a collection of symptoms and problems that go together, even though there may be different underlying diseases.
All dementia is caused by damage to the brain. By far the most common cause is Alzheimer's disease, which causes the brain to develop strange "plaques" and "tangles." Over time, more and more brain cells are damaged and die. As this happens, a person has more and more trouble with thinking ability.
But there are other diseases that can damage the brain. Dementia with Lewy-Bodies, Fronto-temporal Dementia, and Parkinson's disease are other types of "neuro-degenerative" diseases, meaning they cause a slow dying-off of brain cells. There's also something called vascular dementia, in which dementia symptoms are thought to be due to the damage of countless tiny strokes within the brain. And of course, people can have more than one dementia disease at the same time; signs of two dementing diseases are often found in those who get autopsies (this is sometimes called "mixed dementia").
So when a family notices typical [signs of dementia] (https://www.caring.com/checklists/signs-of-alzheimers), like difficulty with familiar tasks, or forgetting the month and year, which disease is it? Is it Alzheimer's, or one of the other diseases that causes dementia?
Unfortunately, it can be hard for even experts to know with certainty. Using special neuropsychological testing and brain scans, a trained specialist usually can make a good guess as to what is causing dementia. But sometimes, especially in early dementia, the testing results are a bit ambiguous. In these cases, or if expert neuropsychological testing isn't available, doctors often settle for simply diagnosing "dementia." Or they call it Alzheimer's, since Alzheimer's disease is common and patients often have heard the term.
The Solution: Know that all Alzheimer's disease is dementia, and that dementia often ends up being Alzheimer's disease.
The day we discussed dementia was tough for Mr. D and his wife. Mrs. D already had friends with Alzheimer's diagnoses. She had seen how, over time, they became more forgetful and more mentally impaired. For this reason, she'd been afraid of a diagnosis of Alzheimer's. But she hadn't realized that a diagnosis of dementia is not any better than getting a diagnosis of Alzheimer's.
The sad truth is that most people who get a diagnosis of dementia, whether Alzheimer's type, another type, or not-specified, will end up slowly becoming more and more mentally impaired. Until better drugs are available for Alzheimer's disease and other dementias, the mainstay of dementia treatment is behavior management and caregiver support. Knowing just what kind of dementia it is can be helpful but often doesn't change management all that much.
The good news, on the other hand, is that the Alzheimer's Association and others, including [Caring.com] (https://www.caring.com/alzheimers), have created wonderful resources to educate people about dementia and to help support caregivers. Although these resources were designed for Alzheimer's disease in particular, almost all of them are relevant to coping with dementia in general. This is important because people with a dementia diagnosis often don't take advantage of resources that are labeled "for Alzheimer's."
Know that all Alzheimer's disease is a type of dementia, just like all Fords are a type of car.
If you or loved one has been given a diagnosis of dementia, ask your doctor if it's possible to get an exact diagnosis. If it's not, don't panic. Whether it's Alzheimer's disease or another dementia, the essentials of care remain the same: Together we'll manage the symptoms and decline as best we can.