Psychiatric Medications and FTD
"Today, psychotropic drugs are regularly used to sedate people with dementia into compliance, and nursing-home residents who have no diagnosis of mental illness are given off-label prescriptions for Haldol, Seroquel, and other antipsychotics. These drugs were developed for the treatment of conditions such as schizophrenia, not dementia, and are generally intended for young, robust patients; when such medications are given to the frail and the elderly, they induce a lethargy that can mask symptoms of other afflictions. Antipsychotics are also expensive: a Seroquel prescription can cost three hundred dollars a month. Over the past year, the Center for Medicare and Medicaid Services, or C.M.S., has made efforts to track the use of antipsychotics in nursing homes and reduce it; Alonzo serves on an advisory panel considering the issue. Alice Bonner, a director of C.M.S., told me, “People are starting to realize that, with some creativity and curiosity, we can figure out other ways of taking care of people with dementia. There really must be a very compelling reason to use these medications.” -Rebecca Mead, from "The Sense of an Ending"
My mom was prescribed a cocktail of anti-psychotics, anti-depressants, and anti-anxiety medications to try to control her impulsive behavior when she started to decline behaviorally. After having time to read through research around the use of these medications and dementia, I believe they may have caused more harm than good in her case. She was taking Seroquel most notably, which causes side effects such as mood or behavior changes, trouble sleeping, weight gain, increased appetite...all of which my mother had. These specific side effects caused a lot of grief for my dad and I as she became more difficult to control with increased doses....all the while we thought we were helping her! In the thick of caregiving, it is difficult to see there are other options out there. I was not able to begin looking into this stuff until after she moved out of our home. We were so stressed and tired, with no time for researching medications. We trusted fully in her Doctors. This isn't to say they were doing the wrong thing. Since there are no drugs out there specifically manufactured to treat dementia, they were offering solutions as best they could.
My mother became so manic that it became unsafe for her to remain at home. We had to check her into a psychiatric hospital unit for 2 weeks while they manipulated her medication regimen to calm her down. This allowed her eligibility in assisted living facilities, as she no longer posed a risk to other patients with her excitable behavior. Part of me always wonders, though, what if we had weaned her off all the medications for awhile, and then started from there?
A wonderful nursing home in Mankato, Minnesota has struggled with the same questions. At Pathstone Living, only 5-7% of residents receive antispychotic drugs to manage symptoms. The staff there manage agitation with music, games, and individually tailored options. They aren't the only ones, either. At Beatitudes in Phoenix, Arizona, a similar program is in place. As we move towards a better understanding of how to care for dementia patients, it is important on an individual level to question our loved one's medication management, in order to fully understand the effect they may have on their behavior. Looking back, I know that much of my mother's erratic behavior was not just her dementia - rather she was on mild-altering drugs that were playing a large role. But again - like with all aspects of FTD - we will never really know what the best thing to do was. And, while there is some cognitive dissonance there, it is also a relief knowing we are trying our best, and that's all that matters!