Because Harvey and I were both physicians, I thought that navigating the medical aspects of his illness would be, if not easy, at least manageable.
That proved to be the case in getting a diagnosis for him. It took just nine months after I first knew that something was wrong. This is an incredibly short time; the average length of time it takes to get a diagnosis is two years. It still felt like a very long time, because my gut was always telling me that it was Alzheimer’s disease.
The reasons it takes so long to get a diagnosis are multiple and variable. The initial evaluation includes a thorough history, with questions about prior medical history, surgeries, medications, prior head injuries. Then a timeline of current cognitive issues should be obtained, from both the patient and the spouse/child/friend that is closest to the situation. Sometimes these histories need to be obtained separately so that the patient doesn’t feel bombarded or ganged up on.
Next, a thorough physical examination, including a screening tool for cognition, such as the Mini Mental Status Examination should be employed. Then laboratory tests and a brain CT or MRI. And all this should be done on an initial consultation with your primary care physician or a neurologist.
This initial evaluation is designed to rule out causes of cognitive dysfunction that might be readily reversed, such as a poorly functioning thyroid gland, low levels of vitamin B12, or depression. It is a remarkable thing to watch the fog of memory loss lift when one of these conditions is reversed!
The physician may then elect to order a neuropsychological evaluation, a PET scan, or just a period of watchful waiting. The first two tests mentioned are expensive, and can give a more definitive diagnosis, but the waiting period is just as important.
A diagnosis of Alzheimer’s disease or any other progressive dementia, cannot be made on an initial visit. There must be documentation of decline.
You may come back from the initial consultation with a diagnosis of Mild Cognitive Impairment (MCI), as Harvey did. This descriptive diagnosis implies that there are demonstrable memory problems, but they are not affecting daily life.
An important aside here: “Dementia” is not a diagnosis. It is a symptom, like fever is a symptom. “Dementia” says nothing about what is causing the memory loss. It is imperative, therefore, that the type of dementia be diagnosed. It makes a difference to the treatment protocol and to understanding what to expect going forward.
It is important to get a diagnosis as soon as possible so that you can plan for the future while your loved one can still express his or her desires for their lives going forward.
My best advice in getting to a diagnosis is to be persistent. If you start with your primary care physician and he or she doesn’t take your concerns seriously enough, ask for a neurology referral.
3 Responses
Thank you, Renee, for this segment. I had no idea that getting a diagnosis for memory loss was complicated by so much involved, or that dementia is a symptom, rather than a diagnosis. We laymen can gather facts from many sources, but still not have correct information. Even as a physician, it was a lengthy process to find that Harvey’s dementia would lead to Alzheimer’s.
Jo, I am so glad that was helpful! Very common misconception to think that dementia is a disease but different from Alzheimer’s. I’ve even had patients tell me, “My father has dementia, not Alzheimer’s.”
Renee you know I’m very happy you are doing these blogs! This is a very important part of this disease that most people don’t understand , you have to talk and share to be able to process and progress with this as a family ! Too many people don’t accept the diagnosis!