MANAGING SYMPTOMS
Managing Cognitive and Behavioral Changes
Bradley F. Boeve, MD
Professor of Neurology and Director, Division of Behavioral Neurology, Department of Neurology, College of Medicine and Science, Mayo Clinic, Rochester, MN
Lawrence I. Golbe, MD
Professor of Neurology, Rutgers Robert Wood Johnson Medical School Director of Clinical Affairs and Scientific Advisory Board Chairman, CurePSP
The cognitive and behavioral changes of PSP can present a major challenge to the caregiver. Cognition concerns functions such as speech, memory, organization of thought, solving problems, and initiating new ideas. Behavior, on the other hand, concerns mood, appropriateness of behavior, and sociability.
The single most important piece of advice for those whose PSP is causing cognitive problems is to stay physically, mentally, and socially active.
30
It is important to establish a daily routine and stick to it, using a written or digital daily planner. The medications that may modestly help the memory problems of Alzheimer’ s do not, unfortunately, help much in PSP and can cause gastrointestinal and bladder overactivity, with cramps, nausea, diarrhea, urinary urgency, or even incontinence in some cases.
What appears to be depression in PSP is usually apathy, a very common feature of PSP that does not respond to antidepressants. It may respond to amantadine or to amphetamine-like medications, but this should be discussed carefully with the neurologist or psychiatrist, as those drugs can have significant side effects.
Caregivers must come to terms with the fact that the patient will not return to their previous normal cognitive or behavioral state. They must choose their battles carefully and avoid arguing with the patient, instead redirecting them to a more appropriate activity or location. It’ s okay to tell white lies as long as it’ s for the patient’ s safety and comfort. Support groups can be very helpful, both for the caregiver and the patient.
Respite services to keep the caregiver from burning out are very useful and may be available through local community agencies. A social worker can advise on respite care.
The cognitive and behavioral problems of PSP are likely to worsen temporarily during a period of unrelated stress. For example, pain arising from a bedsore, arthritis, sciatica, tight clothing, or an undetected infection can cause confusion, agitation, or exaggeration of any other existing cognitive / behavioral deficit. Common examples are bladder infections, pneumonia, infected bedsores, and even the common cold. Any physical illness, even if not painful, can do the same thing. Ordinary fatigue and lack of sleep are other common culprits, as is stress arising from excessive social expectations or pressure from the family to perform what the patient can no longer perform.
Another common cause of worsening cognitive or behavioral symptoms is inappropriate medication, such as sedatives, tranquilizers, sleeping pills, pain pills, antiparkinson medications, antidepressants, antihistamines, and antipsychotics( medication for hallucinations or delusions). Of course, use of alcohol or other recreational drugs can do the same.