Dear Dr. Camardi,
I’m so angry right now I feel like calling a lawyer. My mother is 93 years old, and, I’ll say up-front, she can be difficult because of the dementia. She’s in this nursing home in D.C., and these people don’t know what in God’s name they are doing. She is a walking zombie right now because they keep adding drug after drug for every little thing.
I mean ANYTHING. I was standing there one day, and Mom clears her throat. They call that a cough, and they wind up giving her something for it! And she’s still on it. We sat with her over the anniversary of Dad’s passing, and she cried a little. They said she was depressed, and they gave her a “happy pill.” Then she can’t sleep, and they gave her something for that. Then they said she was too sleepy and gave her something for that. Well, little by little she got stranger with every passing day.
I showed her “care team” your article on the Beer’s List, and they agreed and started to take away some of the pills. Low and behold, she got better. Then a new “care team” took over, and, don’t you know, here we go again with them adding back the same pills! Now, they won’t listen to me. I’ve had it. What should I do?
— Washington, D.C.
Sorry to hear you are having such difficulties. As much as I would not like to put your mother through the stress of change, I think it’s time for a move to a new home.
You need a small tight-knit group of nurse practitioners and doctors that work together. As you look for a new home, be sure to emphasize that you expect two-way communication regarding your mother’s care. It’s also important that you maintain the high degree of vigilance you have already demonstrated.
Providing care for a patient with dementia can be complex. Almost every waking moment, the patient’s brain is working overtime trying to make sense of everyday reality. It’s a frustrating struggle for all concerned. We see the patient’s frustration through certain behaviors, including agitation, social withdrawal, depression and loss of interest. Oftentimes drugs are prescribed to address these behaviors but bring along their own problems.
The truth of the matter is that these drugs are used because the medical profession has little else to offer. We do not have a cure for dementia because we do not as yet fully understand it. So we stumble in the darkness of our ignorance as we struggle to find something that does work. This is the inescapable history of medical science from recorded time.
As such, let us study how to not make things worse. If you are a family member and/or decisionmaker for a patient with dementia and things are not going well, ask to have a meeting with the patient’s doctor. Then ask if any of the groups of drugs I’ll list below are being prescribed and, if so, why. Keep in mind one thing: None of the drug classes listed here are approved by the FDA for use in the care of patients with dementia. Plausible reasons for their use can exist, but if they adversely affect a patient, then alternatives must be explored.
As a basis for this position, I look to the work of D.T. Maust et al. as published in the Journal of the American Medical Society. The study examines the drugs prescribed to over 700,000 dementia patients whose average age was 82. Many medical professionals would agree that trying to control a psychosis with drugs not intended for such a use is a recipe for disaster. These drug classes, and some examples, are antidepressants (Zoloft, Celera, Lexapro), anxiolytics (valium, Xanax, Ativan), antipsychotics (risperidone , clozapine, haloperidol), anti-epileptics (valproic acid, phenytoin, carbamazepine) and opioids (oxycodone, hydrocodone, fentanyl).
In Maust’s work, over 70% of patients were prescribed at least one of the drugs listed above. Leading the league was antidepressants (over 70%) in the mistaken hope that an antidepressant would ease the depression of dementia. Over 25% of studied patients received an anxiolytic for the anxiety of depression, and likewise it did not work well. Yet these classes of drugs continue to be used due to a lack of imagination in developing non-drug therapies, not to mention nursing home regulations.
Let me elaborate on that last part: When I worked with patients with dementia, nursing home administrators approached me too often complaining that the non-medicinal approach wasn’t working fast enough in their minds. They would add subtle pressure to “quiet them down” and medicate them. Their opinions likely stemmed from constraints faced by nursing homes, which can be penalized by the state, if a screaming patient disturbs others.
However, I often found that talking calmly to a screaming patient with dementia, who may be “sundowning” or having a bad day, often helped the situation. Afterward, I would call the patient’s family and discuss the problem. Many times, we found a solution, whether it be increasing the number and duration of visits with family and friends, bringing pictures from home, playing familiar music or watching TV together. Not only did it calm the patient, but it made loved ones happy to be able to help out.
It’s not easy to find out what a patient with dementia needs. It takes hard work from all sides, but with patience it’s doable. Sometimes medication really is the best choice, but if you see one of the classes of drugs listed above in your loved one’s medication list, open a dialogue with the doctor and see if there is another way. There usually is.
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