|Susan Woolley Levine
Photo by Erin Lubin
Susan Woolley Levine is a clinical psychologist associated with the Forbes Norris MDA/ALS Center at California Pacific Medical Center in San Francisco. She specializes in neuropsychology, a discipline that explores the brain changes associated with various kinds of thinking (cognition), feeling and behavior.
After earning a doctoral degree in psychology at the California School of Professional Psychology in Alameda in 2000, Levine became a postdoctoral psychological assistant and later a psychologist at California Pacific.
Recently, she contributed the chapter "Thinking and Behavior in ALS" to Amyotrophic Lateral Sclerosis, by neurologists Robert Miller and Deborah Gelinas and nurse case manager Patricia O’Connor, released last year by Demos Medical Publishing. See the review in January’s MDA/ALS Newsmagazine.
Q: What kinds of cognitive changes occur in ALS?
A: Most people who have cognitive changes have mild problems, such as difficulty paying attention in conversations, trouble concentrating, and slowed thinking, such as trouble finding words. Shifting attention from one thing to another can be particularly hard.
Q: How often do cognitive problems occur in ALS?
A: About 30 percent to 50 percent of the patients have some cognitive changes, but most have changes that are so mild that they wouldn’t be too noticeable unless testing were done. Progression to true dementia — severe cognitive impairment — occurs in only a small minority of patients. It’s not the same as Alzheimer’s disease
Q: What explains this?
A: There are some changes going on throughout the brain, not just the motor parts. The frontal lobes, which are the "executive" parts of the brain, are affected.
Q: Do these brain changes caused by ALS produce emotional as well as cognitive effects?
A: Yes. The emotional effects can be things like apathy, not being interested in things that one would normally be interested in, and a decrease in motivation. Those things can sometimes be difficult to tease out from depression, but they’re something very different.
Also, sometimes people can become less agreeable or more introverted than they were. They might also have a little more difficulty detecting or understanding the emotions that their family members might be experiencing, and sometimes they don’t see the changes that their own personality has gone through.
Brain changes can cause a person to become very frustrated or irritable about a certain issue and get really stuck on it.
Q: Is it important to distinguish between cognitive and emotional problems resulting from changes in the frontal lobes because of ALS itself and those resulting from anxiety or depression associated with having the disease?
A: I would say it’s important to try to do that, because depression or anxiety can be addressed with specific medications. (Editor’s Note: Sorting out the subtle differences between cognitive dysfunction that has its roots in depression or anxiety and that which may be caused by frontal lobe changes is for a professional, not for family members, to do.)
Q: What medications are commonly prescribed?
A: I’m not a physician, so I can’t speak directly to that. But usually doctors try to address any mood problems that can be treated with antidepressants or anti-anxiety drugs. Then, if those don’t seem to help, they may try medications that are geared toward stabilizing cognitive impairment.
There are no medications that are approved to treat cognitive changes specifically in ALS. However, doctors may use those that are approved for the management of Alzheimer’s disease, such as Aricept (donepezil), Exelon (rivastigmine) or Reminyl (galantamine). These drugs affect the acetylcholine (a chemical messenger) system in the brain.
Q: Other than medication, are there things family members and caregivers can do to help the person with ALS-related cognitive impairment?
A: Organizing and simplifying are important. Have a specific place for commonly used things, such as the television remote and door keys.
Minimize distractions. If someone is trying to communicate via e-mail or on the phone, make sure that the radio or television is off.
Encourage doing one thing at a time — not talking on the phone while paying bills, for instance.
Help the person to write notes or use a tape recorder to keep track of things. There’s no need for people to try to force themselves to remember everything.
Minimize physical discomfort or pain. If the person is stuck on something that’s upsetting him or her, that’s one time when a distraction is a good thing. Try to divert attention from whatever is upsetting him and bringing him to something enjoyable.
If the person is apathetic, try to think of things that have interested him in the past, anything that the person takes to, like reading a magazine or working on a puzzle, or playing with the dog. It doesn’t have to be writing a life story.
Don’t try to convince the person that he or she has changed by pointing out all the ways that he’s changed. That’s usually not very effective, it wastes energy, and it can lead to a lot of frustration. It’s not that the person with ALS doesn’t want to see. It’s usually that they aren’t able to see these changes that they’ve gone through.
Q: What about mental health counseling?
A: Family members and caregivers seek counseling more often than the patients themselves, usually to cope with the diagnosis or with their own exhaustion. Looking at the pain associated with their own disease can be quite overwhelming, but sometimes ALS patients seek help with relationships or self-image.