A few years back, one of the physicians I worked closely with asked me to meet with the wife of one of his patients.
Terry’s husband Joe had been diagnosed with Dementia of the Alzheimer’s Type the month before, and the physician was becoming concerned about Terry’s understanding of the illness.
“What concerns you exactly?” I asked.
“Well, I thought I’d explained the illness pretty thoroughly, but she seems to have really high expectations of the medication I prescribed. I just don’t want her to be disappointed if it doesn’t do much.”
A few days later I met with Terry to get a better sense of how she was managing the news about Joe’s diagnosis. Within the first few minutes, the misunderstanding became clear:
“So when you left Dr. Fox’s office after he’d told you that Joe has a form of dementia, what did you understand that to mean?”
“Well, I know that Joe isn’t okay right now. He gets lost sometimes and has difficulty concentrating at work. But when Dr. Fox prescribed medication for him, I was relieved. At least he will get better.”
The 3 Things You Most Need to Know About Alzheimer’s
While Terry had good reason to hope that the two medications the physician had prescribed might improve Joe’s symptoms temporarily, I would later learn that she’d left the physician’s office without understanding the most critical information of all:
Alzheimer’s and other forms of dementia are progressive, and ultimately, terminal.
If you are the family member or friend of someone with dementia, regardless of what type, this is absolutely the most difficult information to hear. And physicians, who rarely have more than 15 minutes with a patient, may not come right out and say this. Instead, they often provide written information about Alzheimer’s thereby relying upon the patient and his or her family to review the material and seek additional information as needed.
In the last several years I’ve met a number of Terrys.
With each encounter, I’ve tried to help them to come to terms with this truth about Alzheimer’s and other forms of dementia because experience has taught me that if they don’t absorb this information, they lose the chance to do the one thing that is within their control: make informed decisions about what’s best for their loved one.
The second most important thing you should know about Alzheimer’s and other forms of dementia is this:
There is no cure for Alzheimer’s
At best, medication can improve a person’s thinking and functioning for a period of time (two years on average), but medication cannot reverse the damage that has already been caused in the brain. What’s more, once the medication has lost its effectiveness, the rate of decline is as steady as it would have been without medication – in other words, there is no residual benefit. When it is begun later on in the illness, some people don’t see any benefit from medication at all.
And now for a fact that is responsible for a significant amount of very understandable confusion among family caregivers of older adults diagnosed with Alzheimer’s:
Alzheimer’s disease cannot be definitively diagnosed except by autopsy
So why did your mother’s physician tell you that she has it?
Because the brain damage caused by Alzheimer’s disease produces a cluster of very recognizable symptoms (these symptoms are what is known as dementia) that are, for the most part, unlike the symptoms produces by any other disease. Once other causes of these symptoms are eliminated or “ruled out”, Alzheimer’s disease is often what’s left. Alzheimer’s disease is also the most common cause of dementia, accounting for between 50% – 70% of all dementia. For these reasons, the physician may say that your mother or father has Alzheimer’s or Alzheimer’s disease. The official diagnosis in this example would be Dementia of the Alzheimer’s Type.
You may be wondering what the other causes of dementia are, so let me share them here:
- Multiple strokes can produce a dementia that is known as vascular dementia, sometimes called multi-infarct dementia
- Parkinson’s Disease can produce dementia that is known as Lewey body dementia
- Pick’s Disease can produce a dementia called frontotemporal dementia
In addition, dementia can also result from other things such as head trauma (think NFL players), HIV, and even genetic diseases. Lastly, and this is important, other conditions can mimic the symptoms of dementia such as drug or alcohol dependence as well as depression. This is why a thorough work-up by a physician is essential whenever dementia is suspected.
This is a lot of information to digest. You can feel free to contact me with specific questions. There is no fee and I will try my best to point you in the right direction.