LBDA

Four Lessons

I’d barely begun to look over my patients’ charts after receiving the night shift report when my nurse aide said, “Pick up on line 2—daughter on the phone. Wants to ask how patient in room 406—you know, Miss Ellie?—did last night.” “Sure, but I haven’t even had a chance to assess her yet. I guess I could pass on the info. I got from the nurse who took care of her last night.” Then, I picked up the phone.

“Hello? Are you there? This is Ellie Anderson’s daughter. Are you her nurse?”

“Yes, ma’am. I’m Gretchel, and I’m her nurse today until 7 p.m. How may I help you?”

“Well, first of all, I want to know how she slept last night. Because I told them she usually doesn’t sleep well. Please don’t tell me they gave her Norco for her pain. That stuff really messes with her blood pressure and heart rate, and when that happens, she gets really lethargic. You see, my mom has Lewy body dementia. Do you know what that is?”

I’d certainly seen more than my share of patients with Alzheimer’s or vascular/stroke-related dementia. I vaguely remembered reading a short blurb about Lewy body dementia in a psychiatric nursing textbook from my undergraduate degree. I was sure none of my nursing professors had ever lectured about LBD, and I thought I went to a very good nursing school. I recognized the term “Lewy body” because somewhere I’d read that Estelle Getty, who played Sophia on the television show The Golden Girls, recently died from complications related to LBD. That was all I knew.

So after I answered her questions I admitted, “I know very little about Lewy body dementia. Would you mind telling me what I need to know about your mom so that I can make sure to take good care of her today?”

Miss Ellie’s daughter then spent the next 20 minutes patiently teaching me about Lewy body dementia, what to expect during the day, and tips and tricks she used when she took care of her mom at home. What she didn’t realize was that the four lessons she taught me during that phone call transformed the way I cared for my patients with dementia, listened to their caregivers, and educated my peers and other health care providers about the dementia experience. Here they are.

  1. Please don’t treat me like I don’t know what I’m talking about. Yes, myths and stereotypes about dementia continue to persist among health care professionals, even among those who provide direct patient care. Often, when those of us providing direct care hear “dementia diagnosis,” we think “Alzheimer’s” or “stroke,” although there are many forms of dementia, each with their own unique and often overlapping symptoms. I know that in my own clinical practice and research, I found that caregivers of persons with dementia, especially those with LBD, were far more knowledgeable than the healthcare professionals with whom they interfaced. So if you’re a caregiver, don’t be afraid speak up, especially if you find yourself dispelling myths and stereotypes. Anything you know about your loved one’s care will help us tailor a better plan for the day (our care plan during the shift or appointment) and plan for the stay (our care plan throughout the hospital, clinic, or facility visit). I also can’t emphasize enough the importance of having a current list of medications and allergies, an updated medical power of attorney and any advance directives ready for any emergency, because your loved one may or may not be able to answer all our questions at the time we really need answers. Even better—include a printed copy of the 10 Things You Should Know About LBD, found here. It would have helped me and my co-workers immensely to know this resource was readily available. I certainly would have passed it on to the staff working the oncoming shift.
  2. It’s real to her. In nursing school, we were routinely taught about the importance of reality orientation, which involves redirecting the patient to the present time, place, and situation. I have since reminded the health professional students, co-workers, and supervisors I work with that reality orientation is appropriate only when it is therapeutic, i.e., doing so helps the patient relax, think more clearly, and increase engagement in their care. I believe reality orientation ceases to be therapeutic when it has the potential to upset or humiliate the patient needlessly, and in the process, worsen anxiety or agitation. The most heartbreaking example of reality orientation I’ve observed—repeatedly and unfortunately—goes something like this:

Patient: “Where’s [spouse/parent]?”
Caregiver/Provider: “He’s/she’s dead. Don’t you remember that?”
And without fail, I’ve observed the patient experience the grief process all over again.

Those of us who work with persons with dementia regularly use redirection instead. We might distract the patient from the topic they’re ruminating about by discussing the topic from a different perspective (“tell me about what it was like growing up with your siblings”), introduce a completely different topic (“could you tell me more about the puzzle you’re working on?”), or introducing an activity (sorting pictures, taking a short walk, listening to music, etc.). The most effective direct care providers I know are masters at knowing when the situation calls for reality orientation or redirection, based on their fundamental belief that preserving the patient’s dignity is their number one priority.

  1. I stopped asking ‘if you want to’—and started asking ‘what you would like to.’ A few words can make all the difference. When I ask a patient if they can do something, I focus on their capability and/or intent to participate in a task. But when I ask a patient what they would like to do, I focus on their opportunity to make choices from a set of options. Essentially, when I ask what, I shift the burden from my ability to motivate the patient to my patient’s right to engage in decision-making. Of course, there are situations where my patient cannot make choices for themselves. But it is my obligation to offer them whenever and however possible. Whether they want the window shades up or down, which medication they would like to take first, how they prefer to position the pillow, what food they would like from their available menu options. These are choices. I believe that if my patient can answer “yes” or “no” to these options, he/she can and will make them.
  2. Just ask me. Miss Ellie reminded me, “Just ask me, okay?” when it was time for her pain medication, because she wanted to know what she had available, and because she knew ibuprofen “doesn’t make me confused like the other stuff.” One of my pet peeves is when I observe fellow health care providers ‘talking around’ the patient with dementia, i.e., directing their questions and gaze at the caregiver, rather than the patient. It was Miss Ellie’s pet peeve too, and for good reason—she was not forgetful all the time, and was perfectly capable of answering questions accurately, depending on the time of day or situation. : In my clinical experience and research, persons with dementia and caregivers consistently informed me that this habit of ‘talking around’ bothered them more often than they let on. When I hear a patient with dementia blurt out, “You know, I know what you’re talking about” or “Don’t think I don’t know you’re talking about me”—and then observe healthcare providers and/or caregivers gloss over or diminish the statement, then as a team, we have failed to provide patient-centered care. As an educator of health professionals, I acknowledge that ‘talking around’ patients with dementia may be an unconscious habit, acquired through their own clinical training and experience. So it’s my job to identify it when it happens, then to demonstrate ‘talking to’ patients the very next opportunity I get. If you are a caregiver or a person with LBD, I encourage you to do the same.

About the Author

Gretchel Ajon Gealogo, MSN, RN, CMSRN, RN-BC, MHR, is a nurse educator at University Hospital and PhD candidate in nursing at The University of Texas Health Science Center, San Antonio, Texas. Her dissertation research focuses on the adult day program experiences of persons with dementia as health service consumers who make choices about their care.