Photo by Ann Gordon, via Flickr
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.
As a nurse researcher who’s done work on the health consumer experiences of persons in moderate to moderate-severe stages of dementia, I would change the language used here to describe the inaccuracies they report to us as “outlandish.” It’s incredibly dismissive and disrespectful of the patient’s perspective. Just because a story may not be true doesn’t mean it’s not important; if it’s important to them, it should be important to me as a nurse and fellow human being.
Thank you for all of the kind and insightful comments. A lot of people seem to be in similar situations. I agree with the commenters that it’s good to chart everything (even the outlandish stories) to have a record of the patient’s mental status. And of course nurses/clinicians won’t believe the more obviously made up answers. Recording all details in the chart is important. I guess my concern lies in basing treatment on those wrong answers that perhaps don’t seem so outlandish. (Sadly, it’s happened. A psychiatrist at the ED once tried to diagnose my grandmother with bipolar disorder because she answered yes [falsely] to questions like does she go on shopping sprees. Luckily, some nurses realized she was merely experiencing an altered mental status due to a UTI). Of course my family has a health proxy set up, and that helps, but when one of us is not available or en route and my grandmother is left alone describing things that did not happen—that gray area—is what is most worrying. In terms of the question of whether or not the home should be expected to handle patients with dementia, I agree there are limitations in places that are not specifically dedicated to dementia care (though assisted living centers do conduct a thorough assessment and tell you if they think your loved one will do well there). But it is not always easy to find another facility for a loved one with dementia. There are so many variables: location (you want to be close enough to visit frequently); cost (some of these centers are prohibitively expensive); your loved one’s happiness (in this case my grandmother is physically fit, active, and social, and we want her in a place where she can live happily). All of these things are just the tip of the iceberg of concerns that I feel as a family member of someone with dementia (I would need a book to write them all). This is not at all a post to assign blame (the frustration is understandable on all sides, caregiver, clinician, patient), and we’ve been very lucky with a lot of the care she receives. But we’ve also had terrible experiences. Here I attempt only to share some of the gray areas of care for patients like my grandmother, patients who unfortunately are only increasing in number, and who despite the numerous difficulties in treating them, do deserve compassion. Thank you again for all the comments on this post!—Amy
I understand your frustration at the facility for asking your mother to complete a form that she is obviously unable to comprehend, or to remember to drink the cup of oral contrast left at the bedside.
However, you seem to be expecting caregivers to assume that because she has dementia, that they shouldn’t bother to ask her questions.
It is much more revealing of her mental status to document her actual answers than to just write “dementia” in the medical record. Do you actually think that the nurse who was documenting her answer believed that she fell in school?
Let me add, if possible, that the AL facility has copies of my Power of Attorney, also of her lawyer generated living will (written quite a few years ago), and a more recent DNR form which follows state guidelines. The DNR goes with her to the ER if she needs to go there.
I also call very frequently, and stay in touch with her caretakers, not just the director of the facility, but of her day-to-day caretakers as well.
She also has Hospice care (based on a recent heart attack). It was, ironically, just in the nick of time that I stopped the hospital from doing a full heart catheterization on her (she’s had one, years ago, but the point is, she is a DNR and I would not allow any “heroic” measures to be done anyway.
My mother also has alzheimers, and also lives at an Assisted Living facility….she was just moved to the “memory care unit” where there is a much higher ratio of staff to patients.
Before she became wheelchair bound, she had several falls, all of which REQUIRED by the facilities’ guidelines, an ambulance “ride” to the local ER……I cannot imagine how she would have answered the staff, but it would have similar. Patients with dementia “confabulate”, i.e., create stories which make sense of their reality to them. (This comes from her Neurologist).
One good thing, is that her facility, an Emeritus facility, takes my power my attorney for her health and finances seriously. I am consulted about anything relevant to her…..I was sent her flu shot administration form in the mail to sign and mail back to them, for instance.
I would suggest the author look around her for another facility…..if possible. I’ve been over all pleased with this facility, though there are small irritants, nothing major has happened that makes me worry.
I’d also suggest a book, applicable to laymen and to professionals, called the “36 Hour Day”, be sure to get the most recent edition, which is (I think) edition #4…..it is an excellent overview of the condition of demented, explains why and how, and other factors that can be misdiagnosed as dementia, as well as giving good down to earth suggestions for care of the demented.
See:
The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss by; Nancy L. Mace, Peter V. Rabins. It can be VERY helpful in explaining this gradually worsening condition to other family members, and may be helpful to some RN’s and other medical personnel as well.
My heart breaks as this is my mother’s story and imagine adding the fact that my mother does not speak English. I am constantly reminding health care providers that my mother first, does not speak English and they need to provide a Spanish interpreter and then remind them over and over, she has dementia. She can’t be asked to recall important information because she will bring you back to the time she lived in Puerto Rico as a little girl. It is important that cultural competency is at the forfront of health care providers minds along with sensive care for those with Dementia. I have become my mother’s memories and voice along with my brothers and sisters. I fight consitently to make sure my mother gets the best care, but it is hard when other’s refuse to take the time to ask important questions of our elderly population especially and even more those who can’t understand the English Language let alone remember ‘what happenned”.
I followed clients in assisted living and SNF as a RN geriatric care manager. ER visits did not occur for my clients age 85 and above… Their choice, their families choice but yes it required multiple candid conversations on my part with all parties and lots of vigilance. Kindness and comfort are fine for the medical assistants, not taking a history. Its wrong but I have seen it in Magnet institutions and other ‘fine ‘ settings.
Being both an ER RN and a daughter of a dementia patient, my dad has dementia, I can completely relate. It’s sad when our loved ones are asked repeatedly to do certain tasks or recount stories and they can’t. I have been in your shoes…..”my dad has dementia and can’t answer that question for you”. Noone seems to listen. As the ER nurse, I always read my nursing home or assisted living patient’s history and if I saw dementia and no family members were present, I was on the phone with the facility from where they live. I inquired about their baseline mental status and asked all of those questions. After all, I know what it’s like on the other end.
Thank you for sharing your story. I, unfortunately, have witnessed first hand the failure of coworkers to interact appropriately with dementia patients. Providers require education, education and education and leaders in the medical field that will model the proper way to care for dementia patients rather then delegating their care to the lease qualified. I try to remember that the dementia patient I am dealing with may be me one day.
I am sorry that you had such a frustrated experience with your grandmother and I am sorry she had a fall. It must have been so difficult not only to see her go through that, but to deal with the ignorance and incompetence of some of the health providers around her. In general, it seems that many involved in the care of the elderly with dementia have a “willingness to settle for substandard care” (as I describe it) because of limited resources or limited knowledge of the ways that dementia affects the client. cI am an NP and my mom has Alzheimers disease. I have been a nurse for 17 years and an NP for 5 1/2 years. It wasn’t until my mom showed symptoms and was subsequently diagnosed with AD about 3 years ago that I really felt that I “understood” how dementia truly affects the client and their loved ones. I have been an advocate ever since. Sounds like you are as well. Good job writing this…continue to make efforts to educate…they don’t go unnoticed and are so vital. I would argue that it’s not that the providers don’t care…they are just COMPLETELY undereducated when it comes to caring for dementia patients. Knowledge is key. Let’s stop the marginalization of those with dementia! Fight for appropriate care which maintains dignity and best functioning and LIFE!
I write down and chart word for word the outlandish stories. I’m OCD about my charting, and by putting that in my chart, along with charting that they are confused and unable to give consent, I have proof. If they try and climb out of bed 15 times during the shift, in the middle of the night for various reasons, with outlandish stories, they get charted.
This personal perspective is a good reminder that we, as nurses, need to explain to family why we ask the patient questions and allow them to answer. It’s important feedback even if the person has a history of dementia. It is written in the chart to record that the patient is not able to understand what is going on.
Where this woman lives should be changed. As hard as that is for the family it is in the safety of the grandmother. Memory care facilities are prepared to care for those that have these very problems. The hospital that the grandmother is taken to should have a medical power of attorney on file. If they don’t this needs to be corrected quickly. The family member/s who can make decisions for her need to be contacted if she ends up in the ED again.
I wish you the best. It is never an easy road to watch someone you love forget some of the most basic of facts. But clearly your love and compassion for her will be of great help. Please know there are many of us nurses who understand and empathize with you.
Having worked in “Memory Care” I advise you to find a different placement for your grandmother if this is possible. Anyone with experience in Dementia or Memory Care should know better than to leave any form with the resident OR to expect them to fill it out. It sounds like this facility is simply trying to avoid the rules that come with Memory Care and anyone who is doing so is NOT looking at the best interest of their residents!
I wish I could offer encouragement about ED’s, unfortunately this is likely a problem that will not be easily solved. It will require that those who work in Ed’s become better educated on dementia care however, quite frankly, most will not. Bless the CNA who it appears was able to not only sympathize but also EMpathize with you! Would that she were not the exception but the rule.
The facility should not have left the form in the room. When a patient has dementia a manager or director of nursing usually speaks with a family member who has decision making authority on their behalf, about the immunization needed. Someone made a mistake and you can speak to the administrator of the facility about it and they should apologize for the error.