The signs were subtle at first. Then obvious. Then terrifying and heartbreaking all at once.
For Julie Karceski, it was when her mother had small memory lapses and became angry if anyone pointed them out.
For Dylan Cooke, it was when her mother forgot to pick her up at the airport after Dylan’s return from a year in Nicaragua.
Each of these women knew that something was very wrong with her mother. Yet, until doctors pronounced the diagnosis as early Alzheimer’s disease, dementia seemed out of the question. Their mothers were just too young — and so were they, these adult children whose lives changed profoundly just as, in some ways, their lives were about to begin.
‘‘Suddenly, I was facing a life path I really hadn’t considered before,’’ Cooke said, recalling the day her mother received the diagnosis of early dementia. ‘‘I was facing losing my mom to a pretty horrible disease. I don’t think people are ever ready for something like that, but I certainly wasn’t . . . at 24’.’
Early-onset Alzheimer’s is particularly cruel. The disease strikes some in their prime, when careers are at their height and the rewards of a lifetime’s work at last seem within grasp. It destroys memories and the ability to learn, then wipes away most of one’s identity, leading eventually to death.
Young adult children also bear a terrible burden. Twenty-somethings — those who only recently tasted independence and those who still lean on their parents from time to time — can find themselves thrown into the unfamiliar role of their parent’s caregiver. Some put their lives on hold, postponing graduate school or marriage. Others pass up job opportunities that would take them away from home. Just as often, they feel pressure to get on with major milestones, to accomplish the big things in life before their stricken parent departs.
For some adult children, a parent with early-onset Alzheimer’s means that their inheritance might include a gene that predisposes them to early dementia. That’s the case in ‘‘Still Alice,’’ the movie starring Julianne Moore that has drawn attention to early-onset Alzheimer’s and the destruction it visits on families.
‘‘You just find yourself in this suspended state for years because you don’t know how to move forward,’’ Karceski said. Karceski said her mother, Dawn, a registered nurse, was in her 50s when she began showing symptoms of dementia. Julie Karceski was then an undergraduate. With her mother sick, Karceski felt guilty about continuing with her schooling and put it off for several years.
Karceski is now a graduate student at MIT. Her mother, 61, is in a facility for people with dementia and has trouble recognizing family members.
Early-onset Alzheimer’s is the rarest form of the disease. More than 5 million Americans are living with the disease, most of whom are 65 or older, according to the nonprofit Alzheimer’s Association. Early-onset Alzheimer’s affects about 200,000 Americans who become symptomatic before the age of 65, said Maria C. Carrillo, the association’s chief science officer.
Some have Dominantly Inherited or Familial Alzheimer’s Disease, a form of the dementia-causing illness that accounts for about 2 percent of all early-onset Alzheimer’s cases, Carrillo said. This form is passed on by gene mutations that cause an increase in beta amyloid, whose buildup sometimes triggers a series of other pathological changes in the brain. A child whose father or mother is carrying the abnormal gene has a 50 percent chance of inheriting it. If it’s passed on, the child will almost certainly develop dementia, Carrillo said.
Moore, who has been nominated for an Academy Award for best actress for ‘‘Still Alice,’’ modeled her performance in part on the experiences of Sandy Oltz. Oltz, a former surgical nurse from Sartell, Minn., was diagnosed with Alzheimer’s in her 40s. Oltz, who is now 50, said physicians first thought her memory and cognition lapses were caused by stress.
‘‘I was putting things away in the wrong places. I was forgetting to pick up my son from baseball practice.,’’ Oltz said. State-of-the-art diagnostic testing at the Mayo Clinic revealed early-onset Alzheimer’s.
Oltz reviewed ‘‘Still Alice,’’ which is based on Lisa Genova’s novel, and talked by Skype or texted with Moore almost daily, Oltz said. Moore pressed Oltz to describe what it felt like to have Alzheimer’s, or what it was like to go for a run and become lost.
Cooke, now 31, also served as a consultant to the movie. She helped actress Kristen Stewart understand what a young adult goes through when her parent develops early-onset dementia. Cooke’s mother, Rae Lyn Burke, not unlike the movie’s title character, is a well-known scientist who helped develop an Alzheimer’s drug that she is now taking to slow the disease’s progress. Cooke was with her when her mother was diagnosed at the age of 60 with Alzheimer’s.
‘‘What do we do now?’’ Cooke recalled asking.
‘‘Well, I’m going to work,’’ her mother replied.
But Cooke reacted differently.
‘‘I totally fell apart. I got on the phone with my best friend and sobbed,’’ Cooke said. Since then, Cooke said, her life has been a lesson in accepting what she can control and what is beyond anyone’s control. And she struggled to balance her career with her duties as a caregiver.