In 2016, when I moved my support group, Beyond Alzheimer’s, out of one hospital and into another, a doctor at the hospital I was leaving said, “Alzheimer’s is the least profitable area of medicine.” Sadly, I wasn’t shocked by his statement. After running my group for five years, I had heard countless stories about how flippantly, and often unkindly, caregivers were treated by doctors when it came to their loved one’s dementia. To be fair, I also heard stories about compassionate doctors who answered questions thoroughly and made themselves available. But the stories of dismissal were more numerous.

 I thought of this recently when I read that an 18-month Congressional investigation into the F.D.A.’s approval of Biogen’s Alzheimer’s drug, Aduhelm, was “rife with irregularities.” The report also criticized Biogen for putting an “unjustifiably high price” on the drug — $56,000.00 a year. What struck me was a comment by someone at Biogen who said they “wanted to make history,” apparently referring to the cost of the drug. So, I guess the thinking was, if they could get enough people to spend $56,000.00 a year, Alzheimer’s would become a more profitable disease.

 Aduhelm was criticized from the moment news of it became public. There were reports of serious possible side effects, not enough clinical trials. And now, after an 18-month investigation, it appears that the company’s dealings with the F.D.A. were not as proper as they are supposed to be. 

 This all brings up a larger picture of how those with dementia, and the people who care for them, are treated. Dementia – any form of dementia – is a disease with no cure. And, except for a few medications that may slow down the progression (which is what Aduhelm is supposed to do) there is no treatment. I can understand why doctors feel helpless, but compassion and basic humanity are curative on another level – they help ease the caregivers through their grief, they make the patient feel that a hand is holding onto theirs if even just for a few moments. Recently, I was told by a woman whose husband has Lewy Body Dementia that, when she called his doctor with questions, the doctor snapped at her that he didn’t have time to answer her calls. I’m going to assume that, if her husband had a brain tumor which was being treated, the doctor would have had plenty of time.

 So, my message is this to caregivers: Find some kind of support system, people you can talk to, cry with, vent to, people who understand what you’re going through and how lonely the journey is.  Research what doctors might not take the time to explain. Every form of dementia has its own characteristics. Lewy Body Dementia is vastly different from Alzheimer’s. Both are different from vascular dementia. I wish all doctors were like the doctors on the tv show Chicago Med, but sadly they aren’t. There is nothing wrong with paying attention to the profitability of medications and treatments for disease, as long as human interaction and compassion are also regarded as valuable and necessary. Medicine is a business, we all know that, but it is also a place where people go when they are frightened, when they are searching for hope, or when they have lost hope. When they are looking for someone to reach out through the darkness with some kind of light, even if it’s just a few moments of their time when they are willing to listen and care.