CHAPTER FIVE
GETTING A DEMENTIA DIAGNOSIS brings on a host of feelings: fear, grief, confusion, anger, despair. For some people, it’s a confirmation of what has been suspected. For others, there is a wave of denial. Everyone has a lot of questions.
Certified senior adviser Tiffany Mikles counsels families who are coping with dementia and also moderates related classes and support groups.
She says, “Often, families are nervous about discussing dementia openly with the person who has just been diagnosed. They’re unsure what to say or whether they should say anything.
“Here’s a simple strategy that works for me: I ask early-stage patients, ‘Are you sad about this?’
“That really encompasses the whole thing. People are thinking, ‘I thought I was going to have this lovely retirement; I thought I was going to travel. Now, I have to wear this bracelet that says I have dementia. I had no idea my spouse was going to have to care for me.’
“When I bring out that word sad, it all unfolds. None of us want to talk about that, but it’s the only gift I can offer. I can’t change the dementia. I can’t make it better. But I can acknowledge that you’re feeling sad. You’re grieving the loss of the life you anticipated. So let’s talk about that.”
Each patient, and each family, is different. Some people want to be completely open about a dementia diagnosis. Others want to be completely private. And, of course, there are many compass points between those poles.
One family I treated wanted to be open, but they found themselves exhausted from endlessly having to make explanations. They came up with an ingenious solution: They prepared a two-page fact sheet describing the diagnosis, what friends and family might expect, how they could help, and where to find more information. Each time they had to tell someone new, they gave them the handout. They felt that the more friends and family members understood, the more they could talk with them.
How Is Dementia Diagnosed?
Diagnosing dementia is always problematic. The symptoms are varied, may appear in combination with ones from other diseases, and involve a part of the body—the brain—that is imperfectly understood. In the case of Alzheimer’s, besides experimental scans, only an autopsy that finds evidence of the telltale plaques and tangles between nerve cells can yield a definitive diagnosis.
Sometimes early cognitive loss may be identified as depression. Depression and dementia can look very similar. People suffering from either affliction may eat and sleep too much or too little. They may feel hopeless. They may suffer from a loss of energy. They can’t motivate themselves.
Remember that losses—the end of a career, the death of a spouse—and lost abilities can trigger depression. It’s understandable when someone who experiences his or her powers slipping away feels low. If you can’t do the things you used to do, mood naturally suffers. A hallmark of clinical depression is that the elder doesn’t enjoy the things he or she used to enjoy. Most often, treating depression will improve the person’s ability to function.
When dementia is suspected, a physician will order tests. Here are a few of the most common.
• CAT scan/CT Scan. Computerized axial tomography or computerized tomography combines several x-ray images taken from different angles to create a cross-sectional or three-dimensional picture of internal structures. The images demonstrate strokes, tumors, and bleeds that may also affect brain function.
• MRI scan. This type of scan, magnetic resonance imaging, shows more detailed architecture of the brain. However, in most cases, if a CT didn’t show a tumor or another structural problem, the extra sensitivity of the MRI is unlikely to change the course of treatment for all but those with early dementia. In addition, people with dementia and those with claustrophobia may be more hesitant to spend fifteen minutes or so in the tight confines of the MRI tube rather five minutes in the open CT apparatus.
• The Mini-Mental State Examination. The MMSE questionnaire gives a quick snapshot of cognitive capacity. It evaluates orientation, asking patients to name the day, date, month, year, and season. It asks them to pinpoint address, city, county, state, and, when appropriate, building floor. It tests attention and recall: Patients must identify three objects and then recall them after doing another task, such as spelling world backward. It asks patients to repeat a phrase, to read a set of instructions, and then to complete a three-step task. It asks patients to copy shapes and then to write a sentence.
The MMSE test has 30 points and a score of 24 or more is generally said to be normal. However, it’s a crude test. It does nothing to test judgment or abstract reasoning. I have seen patients score a 30 on the MMSE yet still lack the tools necessary to manage money or run a household. Thus, it often does not detect cases of early dementia.
• The Montreal Cognitive Assessment. The MoCA is a screen that tests a bit more for abstract reasoning, such as drawing trails between numbers and letters that are arranged in a pattern. It also is available in different languages, which is important because being tested in their primary language helps elders to do their best. However, this test is not definitive. If an elder has functional decline but aces the test, more testing is needed.
• Neuropsychology evaluation. Standardized neuropsychological tests investigate the relationships between various brain behaviors, which doctors call “cognitive domains.” These include attention and concentration, language, memory, visual/spatial judgment, and “executive functioning,” which is the ability to plan, initiate, and follow through on tasks.
The process usually involves interviews and a variety of written tests and other activities. The extent and expense of this testing vary widely. A healthy adult might be tested for four hours or more. At times several shorter sessions are required for an accurate assessment. If an elder becomes fatigued or irritable, the tests should be suspended for another day. Of course, it is important to have the person’s medications assessed and adjusted to make sure the function we see is from the person’s brain itself and is not affected by the use of alprazolam (Xanax), acetaminophen with Benadryl (Tylenol PM), oxybutynin (Ditropan), or levetiracetam (Keppra), which can all adversely affect cognitive function and behavior.
A neuropsychological exam isn’t generally needed in cases of advanced dementia. It’s more useful in earlier cases, when there’s a question of diagnosis after a preliminary screen, such as the MMSE or the MoCA. Neuropsychological tests may help parse out the relationship between depression, personality disorders, and dementia that may be causing the lack of judgment.
If a family has concerns, it’s a good idea to test before big problems exist. It can also be useful if an elder exhibits subtle changes and family members are concerned.
• PET scan. Positron emission tomography is a scan using a tracer that binds to the amyloid that deposits in the brain of people with Alzheimer’s disease to more clearly identify plaque lesions in the brain. It is suggestive of disease, but there are also cases in which a person’s function is better than the scan would predict, so this test should still be considered experimental.
• Lumbar puncture. A lumbar puncture, or spinal tap, can be used to sample the spinal fluid for levels of the amyloid proteins that cause plaques in the brain. In this case, a low amyloid level is concerning because it could mean more of the protein is being deposited in the brain, raising the risk of dementia.
In addition, rarely, a condition called normal pressure hydrocephalus causes a rise in the pressure of a fluid found in the brain and spine. The fluid then backs up in spaces of the midbrain known as ventricles. The ventricles enlarge, putting pressure on brain tissues and compressing them. This can result in rapid loss of bladder and bowel control, trouble walking, and dementia. Those symptoms are relieved by withdrawing spinal fluid and decreasing the pressure.
More common, however, is the shrinking of the brain (atrophy) from dementia, which can appear on a CT scan like the result of increased pressure in the ventricles.
• Blood tests. Low levels of vitamin B12, folate, or thyroid-stimulating hormone (TSH) can cause dementia-like symptoms. Supplementing the missing compound can improve mental function but not often reverse the dementia. Simple blood tests can rule this out.
• Syphilis test. Syphilis, the sexually transmitted disease, can also cause symptoms that mimic dementia. This kind of dementia doesn’t usually appear until the syphilis is quite advanced. In these cases, treating the syphilis probably won’t significantly reverse the cognitive loss.