We're Invisible in the Medical System, Too


Several months ago, a man named Jim emailed me. He lives in the Washington area, and he, too, has early Alzheimer's. We got together, enjoyed a walk in the woods near our apartment, and promised to get back together.

Recently, Marja and I along with Jim and his wife, Nikki, went down to the annual Folk Life Festival on the National Mall. We found much in common. I was especially happy that Marja and Nikki—both spouses of men with cognitive impairment—could spend some time together.

Then I received an email from Nikki informing me that Jim had had a bike accident, breaking a collar bone and several ribs—which can be very painful—and causing internal bleeding. The bleeding was probably not serious but deserving a couple of days observation in the hospital.

Nikki wrote:

"When medical professionals ask about medical conditions and medications, I tell them what he's on and that he has early onset Alzheimer's. There's a moment's pause as they take this in, ignore it, and carry on with what they were saying. When I brought it up again yesterday (because they were expecting Jim to manage his own pain medication schedule and that wasn't working), the medical personnel overreacted in the other direction. Now, Jim says, twenty people accompany him to the bathroom and he is being fed with a spoon!

The ignorance of what having Alzheimer's means among medical professionals and how they should adjust their behavior is shocking and awfully frustrating."

The next day Nikki emailed me again:

"I've had many conversations with the doctors, nurses, nurse supervisor, and social worker and they are all abysmally ignorant about how to treat and help a person with a cognitive disability like Alzheimer's.

The numerical scale (1-10) for example, that they use as the standard protocol for determining pain level baffles Jim, especially when the pain is increasing. Even the alternative scale of "happy faces" is difficult for him to answer at times. Last night, he went from 12 midnight to 9 am with no pain medicine! When I arrived, he was frantic with pain: it seemed to have crept up on his brain [unrecognized until it was severe], another symptom of Alzheimer's. We negotiated that he'll be given meds regularly without having to ask for them—with some extras he can get for breakthrough pain. I plan to set an alarm to check on his status through the night."

The ignorance is shocking, but it's also completely understandable to me as a physician because I know how little training medical people receive in recognizing and treating cognitive impairment.

We learn in our training to take care of the seriously demented but not to care for people with less severe levels of cognitive impairment, especially the early stages.

Let me guess what was going through the doctors' minds: Nikki tells them that Jim has Alzheimer's.

They take one look at him sitting on the examining table, responding normally to their questions, looking like everybody else. "Looks okay to me," they tell themselves. So they essentially ignore Nikki's comment, perhaps not even mentioning it to the nurses. Nothing is done to determine the level of Jim's impairment and how his care needs to be tailored, because they aren't skilled in it or perhaps don't even recognize the need for it.

Later, Jim has some difficulty with his medications. Nikki explains again about the Alzheimer's, and the nurses spring into the kinds of action they've been trained in: put the side rails up, accompany him everywhere, talk slowly in loud voices, spoon feed him, and all the other things they believe appropriate to a severely demented person.

As a person with early Alzheimer's, Jim is invisible within the medical system.

Most of the nurses and doctors literally don't know how to recognize him, much less care for him. I don't blame the individual medical people; they've not been trained, and they are subject to all the same constraints of fear and embarrassment as the rest of us.

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.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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I carry a spreadsheet with a list of medications, who prescribed them and the second sheet lists diagnoses and MD who handles it, a long list, including mom's limitations and needs for accommodations. The third page is a list of family members and contact numbers. This has proven extremely helpful at ER's, in ICU and MD offices, the nurses and receptionists love it, enter it, and mom gets better care. It also lets them know you are not an idiot and involved in all aspects.
Much gratitude for this article. My husband at 83 is certainly in a down slide agter being diagnosed eight years ago. We have managed very well and have had the strange and difficult position of being invisible. Our children althugh caring and loving have also done the 'he looks good to me' scenario. What is very surprising to me is that as Tom's dementia worsened and I requested hospice ( our doctors complied) eveny one thought and acts like it is the end. It may not be - we still do what his strength will allow - but we chose to not bring in nurses when we were in a crisis - Tom wanted to get to know them before he could not know them. We are building a relationship with our care givers before it is too late. We have had to replace a few here and there for exactly the reason your artcile states. Also the talking to me not both of us is a real challenge - yes it is difficult with the CI but dignity and respect need to be part of care training. We have chsen to do this at home and we are fotunate to be able to continue a few social and church activities - I think more couples could if medical communities prepared themselves better and supported the patient instead of reacting to the patient lack of symtoms.
God bless you all - TM
I can feel for nikki, my husband, was given HELDO, which turn him into a helpless child, took 4 weeks, to get the drug out of his system. He is better now, but the damage was done push him into Alzheimer, faster than it should have been.