Finding help for a behavior change
Is it dementia, mental illness or something else?
Q. I have an older relative who recently has had an extreme change in behavior with no apparent cause. He has become withdrawn and paranoid, and not at all himself – but doesn’t seem to have obvious signs of dementia. Where do we go for help? How do I know if he needs to go to a neurologist, psychiatrist or what?
A. The simple, and not very helpful answer is, “it depends.”
Let’s start with four major factors on which the answer depends, in no particular order.
First, it depends on what is available near where you live.
Second, it depends on what your insurance will cover and which doctors and clinics are in your network.
Third, it depends on the specific symptoms and problems the individual is experiencing.
Fourth, it depends on whether the individual believes there is a problem and wants to do something about it.
Learning the lingo
Before initiating anything, we should understand what we are getting into and what some of the terms mean.
There is memory loss that goes along with normal aging; mostly this is a slowing down of the rate at which we react and learn new things. It is not severe and people adapt to it.
“Dementia” is a loss of memory and thinking capacity which is severe enough to interfere with the person’s ability to function independently. Alzheimer’s disease is one type of dementia; there are other types as well.
In between normal aging and dementia is something we call Mild Cognitive Impairment (MCI) where the person has had some memory loss, is still functioning independently, but is struggling a bit.
Significant memory loss is worth a visit to a doctor. It may indeed be the beginning of a dementia, but it also may be a few other things. If there are also other symptoms, like changes in mood and behavior, or difficulty in walking, they really deserve to be checked out.
In an ideal world, everyone should be able to start with their family doctor (primary care provider, PCP) who should be able and willing to do the first assessment and guide you as to what to do next. If your relative with the problems does not believe he has a problem, it is even more important for the family to talk with his PCP and enlist the doctors’ help.
If your PCP has the time and the right training, the first assessment will take a “history” from the patient andthe family to understand what is going on, how long it’s been going on, and what else is going on. A short cognitive screening test (like the “MoCA”) will help assess how severe the problem is. It is really important to recognize that a screening test does not give you a diagnosis. A lower than expected score on the MoCA does not tell us whether the person has dementia; it only means the person deserves a more detailed assessment. A few blood tests will help determine whether some basic things like thyroid functions and vitamin levels are off kilter, in which case fixing those would be the first step.
PCPs who are not trained in geriatrics might do a shorter assessment and refer you to a geriatrician (geriatric medicine specialist) who would do the above and maybe a little more.
Seeing a specialist
And then, if needed, the next step would be seeing a specialist. The kind of specialist to see depends in part on what the main concerns are.
If what you are noticing is depression, anxiety, apathy, erratic behavior, personality change, it would be good to see a psychiatrist with training in geriatrics (a geriatric psychiatrist). This specialist would take a history and do an exam to try to sort out whether or not the changes you are observing are related to an underlying disease that also causes dementia.
If mild memory loss is making someone struggle with their everyday activities, the person may withdraw from those activities to reduce the stress. They may become anxious or depressed. They may misplace objects and then accuse others of stealing them. On the other hand, someone with severe depression is going to have trouble concentrating and remembering. Behavior changes can be tricky to figure out in an older person. It takes time and patience to sort these out; there isn’t always a simple test to give us the correct answer.
Ordering tests
The psychiatrist may order some sort of brain scan (CT or MRI or PET scans) to see what changes might be present in the structure of the brain.
The psychiatrist may also order detailed memory and cognitive testing by a neuropsychologist.
These tests will tell us something about the function of the brain.
On the other hand, if there are no mood or behavior changes, the PCP might refer the person directly to a neurologist, who, after taking a history and doing an exam, would most likely order one or more brain scans and maybe neuropsychological testing as well.
It would be unusual for a neuropsychologist to be the first port of call, but if that were to be whom you choose to see first, the neuropsychologist would likely refer you to a neurologist or psychiatrist, depending on what the tests reveal.
If therapy is needed
A person could also see a specialist for counseling/ talk therapy because of depression, anxiety, and so on which could be causing problems at work or at home. That kind of specialist is usually a psychologist or social worker. These experts can also work with the family to help them understand and cope better with the responsibilities of caregiving.
The good news here is that whoever you see first will do their own assessment and refer you to the best kind of specialist for your case, if a specialist is needed.
In some areas there are Geriatrics Clinics and/or Memory Disorder Clinics where all the specialists are available to do all the required assessments, and in some cases offer you the opportunity to participate in research. For example, in Pittsburgh, UPMC Senior Care Institute and AHN Neuroscience Institute are options.
Finding treatment
Once a diagnosis has been made, treatment will depend on what the diagnosis is. It’s possible that going forward you will only see one doctor for treatment; or you might need the services of a team of doctors.
So the most important step would be to start the process, and get a foot in the door, knowing that it may take some time to get it all figured out. And always keep your family doctor in the loop.
Significant memory loss may be the beginning of a dementia, but it also may be a few other things.