People seem to have tremendous faith in pills. Pharmaceuticals help us manage many diseases, so maybe this fervent belief has some grounds. But dementia is a disease that is very resistant to intervention. Our family has experimented with two different FDA approved drugs in an effort to improve my mom’s quality of life. One had a minimal, positive effect. The other was disastrous in every way and made us change our approach to care.
Months before my mom had a real diagnosis, her family practitioner prescribed Aricept to treat her memory loss symptoms. It was not a terrible move. But it bothered us that no real study had been conducted to identify the roots of her illness. There was no PET scan, no MRI.
When Mom told us that she was taking this drug, we asked her what diagnosis she’d been given. She answered that there was no diagnosis, just memory loss. Then she laughed when she told me the drug was waking up her ovaries instead of her brain. A few months on this medicine brought modest improvement in mental function, but had zero effect on the progress of the disease.
After changing doctors, we pursued a twisting path of investigation and dashed hopes. Eventually, my mother got a more precise diagnosis of her problem. She had a rare form of dementia that is not known to respond to any course of treatment. To address her symptoms, she began taking Namenda, another Alzheimer’s drug that we were told would have a mild effect on her cognitive function.
A few weeks into the treatment, she began to have episodes of wild behavior. Mild mannered Mom was throwing her clothes around her room and hiding underwear beneath the bathroom sink. One day she removed the contents of her closet and hurled everything on the bed: dresses, blankets and tax receipts all over the room. Days later, I came home from the auto shop to find she’d shredded a pair of pants with a steak knife.
The most terrifying aspect of this incident was that I thought the disease was driving her behavior. We had one of the saddest conversations imaginable when I told her I’d have to call the doctor and he might make me put her in the hospital. She said was ready to go — not just to the hospital, she was ready to depart this earth! Together we cried a river.
Fortunately, my sister discovered that Mom’s strange behavior was a rare, but documented side effect of Namenda. If there is a moral to this story, it is that different people have different reactions to the currently available drugs. My mom is tiny and has always had difficulty adapting to normal dosage guidelines. In this case, the consequences of that tendency were horrific.
This story is here to serve as a cautionary tale. If you’ve have had better experiences with medications, I would love to hear about them. Feel free to share any good news with other readers of this page. We all need to learn as much as we can.