By Amy M. Collins, editor
A few weeks ago I visited my grandmother, who suffers from dementia, at her assisted living home. In her room, my family and I noticed a complicated form with instructions for residents to get their flu vaccination. Residents had to fill it out, sign it, and bring it to the person administering the vaccine on a certain date. For my grandmother, this would be impossible—she can no longer remember what day it is, when or if she has eaten, who she’s spoken to within the last five minutes, or where her room is located.
When this concern was broached with the front desk of the facility, they seemed to be adamant that she needed to have the form with her on the day of vaccination. We could, of course, help her fill it out—but since it had been given directly to my grandmother, who was to say we would have ever learned of it except by chance? And who would make sure she brought it with her on the day of vaccination?
While the facility offers assisted living, they often remark that they are not a “dementia facility.” Looking around, however, one is hard-pressed to find a resident without some form of dementia. In our case, something was eventually worked out about the form, but it was frustrating that a home that deals so regularly with people with memory issues can’t understand why certain requests are unreasonable.
And it’s not just the home that has this problem—many health care facilities do as well. A large responsibility is placed on people with dementia when they are asked by a clinician to give an account of what brought them to the facility. Depending on the person’s stage of dementia, she or he may not be capable of answering, of being a proactive patient navigating the complicated health care sea. These patients are not likely to remember their personal histories. They don’t remember where they have to be and when, or what happened to warrant their hospital visit.
Last summer, for example, my grandmother had a fall. As part of her facility’s protocol, she was brought to the ED, where, until I got there, she was left alone to give her own personal account of the event. Dementia is listed in her health record, but I’ve seen multiple providers still ask her what’s happened or what seems to be wrong—questions she cannot accurately answer. On this particular occasion, I caught the end of what she was telling the nurse when I arrived.
“I was at school, and all my teachers were fighting over me, because I’m the best student. They called me into the classroom, and I rushed in and fell.” Obviously, at 87 she is no longer in school. Yet the nurse was writing the explanation into her electronic health record.
“That’s not true,” I had to say. “She can’t answer your question because she has dementia. She can’t remember what happened when she fell.”
And later, when another nurse got frustrated because my grandmother would not stay still during an ECG, I had to again say, “She has dementia. She can’t remember, even for a minute, that you’ve told her to sit still.” I tried to calm her, hold her arms steady as the nurse attempted the test again.
And when she was left with a contrast liquid to drink for her scan, I thought about what would happen if I hadn’t been there. Who would remind her she had to drink it? Certainly not the busy ED workers who were running from crisis to crisis.
A nurse’s assistant approached to get some samples, and asked me, almost accusingly, why my grandmother had three pairs of underclothes on. I repeated, like a robot, “she has dementia . . . she probably forgot she put on one pair before pulling on another.”
My grandmother was telling the assistant some outlandish story. My eyes teared up as I listened to this story she was inventing to compensate for her lack of memory. I sat down and held her hand. “Where do you work?” she asked me, as I tried to smile. “In the city,” I reminded her. “And your mother lets you go to the city, every day, by yourself?” she asked. The nurse’s assistant and I shared a look over my grandmother’s shrunken, blanket-covered form. We both seemed to understand that this was a patient who wasn’t capable of fending for herself. Yet the next time she ends up in the ED, the whole process will repeat itself. I have seen it happen again and again.
I know it must be frustrating and difficult for providers to care for people like my grandmother who can’t give them the information they need. Obviously, family members try to be on hand to serve as such patients’ memories—but what happens when a family caregiver isn’t available? With so many people living with dementia and Alzheimer’s disease, how can we be sure these patients are giving accurate information to providers and in turn getting accurate care? I don’t have the answer, only the hope this will somehow change.