THE OVERLOOKED VICTIMS OF ALZHEIMER’S
With the new Alzheimer’s drug lecanemab from Biogen and Eisai showing promise, Alzheimer’s is currently in the news. I am as hopeful as everyone else that science can find a treatment and possibly a cure for a disease that has claimed millions of people and will likely claim millions more in the future. But Alzheimer’s casts a wide net, sweeping up entire families and friends in its unpredictable storm surge. This is a story about the people who are not usually in the news, who go through days, months, years feeling that no one wants to hear about their challenges, their pain, and at times their desperation. This is a story about the caregivers.
While the medical establishment is working to find treatments for Alzheimer’s there is, within that same field, a pattern of neglect and dismissiveness toward caregivers. There are definitely caring doctors who patiently answer questions and offer information, but there are too many who treat caregivers as if they are a nuisance. I have heard countless stories at this point, so I know it isn’t a rarity.
In 2011 I started a support group called Beyond Alzheimer’s which I ran for six years. People would come in with lists of unanswered questions that their loved one’s doctors just didn’t have time to answer. Basic questions, like is Alzheimer’s the same as dementia (the answer is, Alzheimer’s is a form of dementia.) Many times, patients had been mis-diagnosed as having Alzheimer’s when, in listening to the symptoms described, it was pretty clear that Lewy Body dementia was more likely. Lewy Body dementia is a different challenge, a rockier journey. A woman I know whose husband was diagnosed with Lewy Body called the doctor several times as her husband began having hallucinations, and was told by the doctor to stop bothering him, he was too busy to speak with her. Another woman whose husband showed signs of dementia after a bad head injury and subsequent surgery, was told by the doctor, “You aren’t getting your husband back.” A doctor at one of the hospitals where I ran my support group said to me, “Alzheimer’s is the least profitable area of medicine.”
Of course, if this new drug, or any drug, is effective against the disease, profitability will drive everything. But what about the people whose journey is often one of silent desperation? Will they still remain in the shadows, largely unspoken about, too often ignored?
Caregivers wake up each day steeling themselves for the unpredictability that rushes in with a diagnosis of dementia. It’s like living with dissonant, out of tune music and searching for harmony. They feel alone, trapped, and weighed down by more questions than answers. Few people, if any, ask how they are doing. It became predictable in my support group that when a new person came in and was asked how they were doing the reaction from them would be surprise. In the ten years that my father was ill, everyone asked how he was doing; I was never asked once. It was a big reason I started a support group years later.
Perhaps when the news turns to Alzheimer’s because of a new drug, it could also turn in the direction of the people who are now caregivers because of this disease. Perhaps doctors could take more time informing them, answering their questions, and asking how they’re doing. The medical profession is well aware that caregivers are very likely to suffer stress related illness and end up as patients themselves. Dealing with disease is not only about finding a treatment or a cure. It’s also about finding our humanity. Just as Alzheimer’s casts a wide net and affects entire families, so should our humanity. So should our willingness to care about those who, too often, feel forgotten and overlooked. Medicine is not just about drugs. Healing comes in many forms, sometimes just in the brief time it takes to pay attention and ask how someone is doing.