For Bernie Limper, the first hints that her mother might be suffering from Alzheimer’s disease came in the usual way. “I noticed my mother was more than just a little forgetful,” she says. If she called her mother, who was then 80 years old, and told her she’d be there to pick her up, Limper would arrive to find her mother had completely forgotten about the appointment. When her mother moved in with Limper’s family, she started to wander out of the house on her own and get lost, not knowing where she was or how she got there. Limper started to sleep in her mom’s bedroom and lock the door with a key so her mother wouldn’t leave the house in the middle of the night.

That was in the 1980s, and doctors then had much less confidence than they do now in diagnosing the neurodegenerative disease. It’s still only confirmed upon autopsy, when pathologists verify the presence of sticky protein plaques and the debris of damaged nerve cells in the brain. But recent studies on dementia make it clear that the process of cognitive decline starts long before the first symptoms of memory loss and confusion appear. Experimental tests that can detect signs of these proteins in the spinal fluid and blood, and imaging tests that can pick up signs of the growing plaques, are giving doctors hope for diagnosing Alzheimer’s at its earliest stages, even before the symptoms of memory loss, confusion, and cognitive decline appear.

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Anywhere from 2.4 million to 5.5 million Americans suffer from dementia, up to 80% of which is related to Alzheimer’s disease. While rates of the condition increase with age, from 5% among those aged 71 years to 79 years to 37% among those older than 90, there is no standard treatment for cognitive decline.

But screening for early signs of dementia has a ways to go before experts recommend it the way they do for cancer, according to the latest report from the U.S. Preventive Services Task Force (USPSTF) and published in the Annals of Internal Medicine. While the USPSTF did find evidence that some of the current treatments for symptoms can be effective, they didn’t find enough data to recommend or reject the idea of universal screening of all elderly, even before they show any symptoms.

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Particularly lacking was data on how simply knowing about potential cognitive problems could help both patients and families cope and plan for the future. In general, screening is a way to identify people at risk or in the early stages of a disease so they can take advantage of treatments or therapies that can slow or even reverse the process. Currently, medications can relieve some of the symptoms of the condition, but no drugs can reverse or cure the disease. And measuring the effects of something like psychological and emotional comfort isn’t something that clinical trials do well. “Psychosocial research is complicated to study,” says Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association. “It isn’t the same as giving one group a medication, and another group a placebo and seeing what happens.”

But many caregivers and family members say the knowledge can help them be better prepared to manage the needs of a loved one with dementia – “it can change their personality, and sometimes a very gentle person becomes very very angry,” says Limper – and help them make practical financial decisions as well. After learning that his wife Greta was suffering from memory loss, for example, Bruce Buller, a retired pastor in Minnesota, anticipated what might happen if she were to outlive him. “It meant giving power of attorney to our daughter, having bank accounts in multiple names, and changing the will,” he says.

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Limper says having such an early head start would have been helpful in her mother’s case. Knowing that an elderly person’s forgetfulness and confusion is related to Alzheimer’s, and not just normal aging, can also help caregivers to be more patient. “When my mom thought I was her mother instead of her daughter, if I would have argued with her and told her she was wrong, it would have upset her,” she says. “I just didn’t argue. What they’re finding out now is that you just have to get the patients through those moments.”

Conducting more research, as challenging as it may be, on how such factors contribute to the benefits and risks of screening is critical, especially since patients and caregivers consider them an important part of the calculation. “I always believe it’s a good thing to know what you’re dealing with,” says Limper, who, like many, believes that there are things we can do to fend off the disease, and does a lot of puzzles and mental exercises to keep her brain active. “I can’t believe that having a screening test wouldn’t have made a difference for my mother somehow.”

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