WASHINGTON | Her performance as a vibrant woman fading into the darkness of Alzheimer’s is doing more than earning awards for actress Julianne Moore. The movie “Still Alice” is raising awareness of a disease too often suffered in isolation, even if the Hollywood face is younger than the typical real-life patient.
Some things to know about Alzheimer’s:
ALZHEIMER’S IS INCREASING BUT THE EARLY-ONSET FORM ISN’T COMMON
The movie is about a linguistics professor stricken at the unusually young age of 50 with a form of Alzheimer’s that runs in her family. That type of Alzheimer’s accounts for a small fraction of the brain-destroying disease.
About 35 million people worldwide, and 5.2 million in the U.S., have Alzheimer’s or similar dementias. The vast majority are 65 or older. Barring medical breakthroughs, U.S. cases are expected to more than double by 2050, because of the aging population.
As many as 4 percent of cases worldwide are thought to be the early-onset form that strikes people before age 65, usually in their 40s or 50s, said the Alzheimer’s Association’s chief science officer, Maria Carrillo, who served as a scientific adviser for the movie. In the U.S., the association estimates that’s 200,000 people.
GENE TESTING ISN’T RECOMMENDED FOR MOST PEOPLE
Alice’s type is even more rare; she tells her three adult children in the movie: “It’s familial. It’s passed on genetically.”
With this autosomal dominant form of young Alzheimer’s, inheriting one of three genes with particular mutations leads to the disease. Children of an affected parent have a 50 percent chance of having inherited the family’s culprit mutation. As in other families, Alice’s children have to grapple with whether they want to be tested to find out.
But the vast majority of Alzheimer’s isn’t linked to a particular bad gene. There are various genes that can increase the risk, but people who never develop dementia symptoms can carry them, too. That’s why medical guidelines don’t recommend genetic testing for the average person.
MANY SYMPTOMS ARE UNIVERSAL REGARDLESS OF AGE OF ONSET
“I can see the words hanging in front of me and I can’t reach them, and I don’t know who I am or what I’m going to lose next,” Alice says.
To help with the movie’s first-person perspective, Carrillo’s group put actress Moore in touch with someone in the earlier stages of Alzheimer’s who could describe how disorienting symptoms felt — that frustrating inability to retrieve a word or the fear that comes with suddenly not recognizing a familiar place.
Forgetting a word now and then happens to lots of people. The Alzheimer’s Association lists warning signs that may distinguish between normal forgetfulness and something you should discuss with a doctor. On the worry list: memory loss that disrupts daily life, difficulty completing familiar tasks, withdrawing from social activities and personality changes.
PEOPLE MAY COMPENSATE FOR A WHILE
If it seemed like the movie’s Alice suddenly declined fast, consider a concept that neuroscientists call “cognitive reserve.” People who have had more years of education are thought to have some protection because the extra learning increased connections between their brain’s neurons. When Alzheimer’s begins blocking those connections, the brain at first can choose an alternate route to retrieve a memory.
“Your brain’s kept buffered up,” explained Carrillo. But eventually, the brain reaches a tipping point and can’t compensate any longer, so “the change seems more dramatic.”
WHAT’S IN THE PIPELINE
There is no cure for Alzheimer’s, and today’s treatments only temporarily ease some symptoms. Scientists aren’t even sure what causes the disease, although a sticky brain protein called amyloid is one suspect.
Nor is diagnosis simple. There is no one Alzheimer’s test, but a battery of evaluations. Sometimes, doctors use PET scans to measure amyloid buildup, but only in carefully selected cases because plenty of people without Alzheimer’s harbor the gunk, too.
The Obama administration has declared a goal of finding effective Alzheimer’s treatments by 2025. Research suggests Alzheimer’s begins silently ravaging the brain up to 20 years before symptoms begin. One approach under study now is testing to see whether curbing sticky amyloid during that window period might at least postpone symptoms a few more years, if not prevent them.
Information on volunteering for research: https://bit.ly/1dRZCv5
The government’s clinical trial database: https://www.clinicaltrials.gov