Dr. David Hilfiker is a physician who was diagnosed with mild cognitive impairmentand was told it would probably lead to Alzheimer’s disease. In a brave move, he decided to start a blog called Watching the Lights Go Out about his fears, questions, and unexpected joys as he heads down this uncertain path. We came across his post titled Invisible in the Medical System, Too, and asked if he could think of five suggestions for ways physicians could be more attuned to patients with mild cognitive impairment. Here is what he had to say:
I’ve been diagnosed with mild cognitive impairment (MCI) for over a year, yet people don’t ordinarily notice. The public (and, unfortunately, the usual) medical picture of Alzheimer’s is the utterly disoriented person, wandering around or terminal in bed. But there are a lot of us walking around … completely unnoticed.
My friend Jim recently entered the hospital for observation after abdominal trauma. He doesn’t usually behave differently from anyone else and has no obvious symptoms, but he has early Alzheimer’s disease. His wife, Nikki, told the doctors about this during his admission. No special orders were written.
When Jim had trouble administering his own pain medications 24 hours later, Nikki again told the doctors about his cognitive impairment. The staff immediately overreacted: nurses put the side-rails up, accompanied him to the bathroom, and spoon-fed him. When Nikki informed them he didn’t need such humiliating treatment, the staff went to the other extreme and left him alone to take his pain medications PRN, which he couldn’t do.
Doctors and nurses would have known how to care for the “usual” demented Alzheimer’s patient, but they didn’t know how to respond to Jim’s early form … or to mine. It’s completely understandable to me as a physician because I know how little training medical people receive in recognizing and treating cognitive impairment. Nevertheless, it’s simply bizarre that most medical people don’t know how to deal with a disease more common than heart disease and more common than all the cancers taken together.
I’d like to suggest five ways that physicians could tailor their care for people with mild cognitive impairment:
1. Pay close attention to a spouse’s or friend’s warning. Many people with cognitive impairment are not mentally capable of recognizing their disease (anosognosia); others are in psychological denial. Only an outside source can provide an accurate history. If there is impairment, inquire carefully about details of what they notice, and what help the patient does and does not need.
2. Include a screening question about memory or “trouble with your thinking” in every routine or admission history of people over 55 or 60. The anatomical changes associated with Alzheimer’s begin approximately twenty years before symptoms develop. Mild cognitive impairment (MCI) may be present over 5 years before dementia, and even early dementia may not be obvious.
3. Have a more sensitive test available. Be prepared, if necessary, to have the patient take a more sensitive test for cognitive impairment than the usual 10-question mini-mental status, for instance, the Montreal Cognitive Assessment (MOCA).
4. Be ready to discuss the likelihood of developing Alzheimer’s if the MOCA shows some cognitive impairment. This is a bit complex, so you may want to refer to a neurologist. There are reversible causes of cognitive impairment, and substantial laboratory and radiology exams will berequired.
5. Talk about the need for future planning with both the patient and the spouse or friend. Even at this stage it is important to figure out who will be told about the diagnosis, how decisions will be made, what financial planning will be done, and the wishes of the patient for care when she is no longer competent to make decisions.
This post was written by David Hilfiker. He is a grandfather of three, father of three, and husband of one. He was a family practitioner in a small town, an inner-city doctor and founder of a small home for homeless men with AIDS. Until his diagnosis with Alzheimer’s a year ago, he wrote books and articles on his work and on political/social/economic/religious issues.
