Memory, Loss, and Alzheimer’s
In ‘Informed Consent,’ the specter of early-onset Alzheimer’s looms over Jillian. What is it, and what can be done about it?
In 1906, German physician Alois Alzheimer described the mysterious case of Auguste, a patient experiencing profound, degenerative memory loss, deep suspicion, and a other cognitive difficulties. At Auguste’s autopsy, Dr. Alzheimer found that her brain was shrunken and riddled with unexplained plaque deposits. He reported his findings to a conference with little fanfare. But 110 years later, the disease that now bears his name is recognized as the most common cause of dementia, and is the subject of ongoing study.
Alzheimer’s disease develops when an increased amount of amyloid protein creates tangles and plaques inside the brain, eventually shrinking and damaging it. These physical changes affect memory and thought processes, as the protein disrupts the brain’s neural pathways and synapses. Symptoms start slowly: occasional forgetfulness, losing words, or bouts of confusion. The disease progresses until the person loses their memory and ability to care for themselves.
Alzheimer’s most frequently appears in people over 65, and the odds of developing the disease increase dramatically as one ages. However, 5% of Alzheimer’s sufferers have the early-onset form, developing the disease in middle age. While early-onset Alzheimer’s is much less common, it can be even more devastating. Symptoms may manifest at just 30 years old, striking people in the prime of their lives, perhaps with young children at home.
The disease does not progress in a regular fashion; early symptoms may come and go, and the subtle forgetfulness in early-onset sufferers is often mischaracterized as sleep deprivation or depression. As these bouts of confusion and loss become more frequent, however, they also become more permanent, until the patient is no longer able to care for themselves. But before reaching that point, the person with the illness can often speak clearly about their experiences. One woman speaks ruefully about her inability to complete a 100-piece puzzle. One man describes arriving at work with two different colored shoes on; his boss sent him home to change, only to have him return with a different unmatched pair. A woman describes the panic of waking up in her bed and not knowing where she was or who was next to her, only to have the memory of her husband return hours later.
There is a genetic link for early-onset Alzheimer’s. One of three mutations will lead with almost complete certainty to developing the disease before the age of 60. These genes can be tested, but would you want to know if you were certain to develop a devastating illness that has no cure? For members of the Reiswig family, the answer was mixed.
This large family was plagued with early-onset Alzheimer’s; of 14 siblings, 10 carried the gene, and all 10 died from the disease. Many passed it on to their children. One of those children, Gary, did not want to know his fate. He chose a life as an innkeeper, which would allow him to be useful even if symptoms took hold, and participated in a study on the condition that he not be told his results. One day he opened the newspaper, and saw his family tree in an article about the study. He was safe.
His cousin, Doug, felt confident. He was healthy, and at 62 was already past the typical age when symptoms arise for the early-onset form. He had a four-year-old granddaughter. He was tested, felt certain he did well, only to find that he did indeed carry the gene. He would develop the disease.
To hear about the experience from patients and caregivers affected by early-onset Alzheimer’s, follow the link below:
There are no cures for the disease. Drugs may mitigate the symptoms, but only for a few months. Beta blockers, statins, and vitamin E, all regularly used for other ailments, have shown promise but no guarantee, and come with their own side effects. Statins in particular can cause memory loss and confusion, the very things the patient is fighting with Alzheimer’s.
Studies are ongoing, though, and many have found exciting possibilities. In September 2016, scientists announced successful trials of a new antibody treatment for Alzheimer’s; by treating immune cells with this antibody, the plaques caused by the malfunctioning genes were cleared away, potentially halting the disease’s progress.
In December 2016, British scientists announced early success with a new class of drugs tested on mice that seemed to halt degeneration, extend lifespan, and restore memory loss without side effects. Other studies that have shown promise include the use of sound waves, flashing lights, and the use of a nasal spray of insulin. And a nonprofit in San Diego announced in January 2017 that they’ll be building an immersive replica of a 1950s town for patients to practice “reminiscence therapy.”
Though we cannot yet cure the disease, new treatments emerge every day. In Deborah Zoe Laufer’s play Informed Consent, Jillian believes she could find the cure, and save herself and her family. It‘s a race against time for her and the millions of people afflicted with the illness, before their memories are lost forever.
Join us for Informed Consent at Lantern Theater Company, January 12 — February 12. Visit our website for tickets and information.
