Stolen Memories: End stage Alzheimer’s is prolonged and brutal for younger patients 

Monitor staff
Tuesday, April 10, 2018

An Alzheimer’s diagnosis is more than just a death sentence for patients – it’s also a grueling, yearslong commitment for caregivers.

“Most families can weather six months of end stage cancer. Turn that into six years with Alzheimer’s, when you’re working full time and taking care of kids, and how are you going to manage that?” said elder law attorney David Craig, who has worked with thousands of Alzheimer’s patients in his career.

Patients with Alzheimer’s can live up to 20 years with the disease. Although every person experiences the disease differently, most people generally start with symptoms of mild cognitive impairment, like memory lapses, and decline to the point of needing help with basic everyday tasks like eating and moving around.

At the end stage of the disease, patients require constant, round-the-clock care.

“Cancer sucks, heart disease sucks, but you get through them or you don’t,” Craig said. “Alzheimer’s never ends well, and it is a long, and sometimes painful, difficult journey.”

Because it is thought that the disease progresses faster in younger people, it’s necessary for families to put a plan in place almost immediately. That means making end-of-life decisions right after a diagnosis.

“Many of the people with younger-onset dementia have a more aggressive disease in the sense that it progresses faster and debilitates them to greater degree,” said Bradford Dickerson, a memory disorders physician at Massachusetts General Hospital. “You have to start thinking ahead as soon as possible.”

State lawmakers have tried and failed for years to pass a “Death with Dignity” law that would allow physician-assisted dying for terminally ill individuals. It’s been shut down multiple times because opponents say the practice violates the Hippocratic oath, and that it could allow corrupt doctors to take advantage of patients.

Alzheimer’s is currently the sixth leading cause of death in the United States, although advocates estimate it could be even higher. In recent years, as medicine has advanced, more physicians have been listing Alzheimer’s as patient’s primary cause of death on death certificates.

“There’s been enough research to show Alzheimer’s can weaken your immune system, weaken your organs and make you susceptible to illnesses. Alzheimer’s is the impetus that makes it more likely to develop something like sepsis,” said Melissa Grenier, Manager of the New Hampshire Alzheimer’s Association. “Now that we know all that, Alzheimer’s is on the record a lot more.”

(Leah Willingham can be reached at 369-3322, lwillingham@cmonitor.com or on Twitter @LeahMWillingham.)