For many family caregivers, the first obstacle is accepting the new person their loved one has become. This can be difficult, even as the disease progresses, because those with Alzheimer's often have "honeymoon" periods where their behavior seems to improve, said Teepa Snow, a dementia care specialist and trainer based in North Carolina who travels the country speaking about the disease. The person may appear lucid and all of the aggression and confusion disappears.
But Snow warns, caregivers should be careful not to be lulled into a false sense of improvement. They should also not think that because their behavior fluctuates, Alzheimer's patients have control over their actions and that they're simply being ornery when they become combative.
"It's so hard because you so much want them to be like they were that when you see the evidence they're not, and then they show you that they can, sometimes you think, 'OK, well, then that's willfulness,' " Snow said. "Because when we were kids and we sometimes did things and sometimes not, there was a huge element of being willful. But this is not the person, this is the disease."
Darlene Jyringi, who runs the Alzheimer's Disease Assistance Center of Long Island in Stony Brook compares the disease's behavioral changes to a fog. "Some days that fog is really heavy and you just can't see your way clear and other days the fog lifts," she said. "And you have to be the one that adapts to that fog lifting and coming in."
But often, Snow said, a caregiver's desire to correct a patient's vocabulary or teach them actions gets in the way of a harmonious relationship. "There's no point in getting her to get it; you can't," she said. "This is the hard part for us, we want them to know what is true. They don't get it, they can't get it and they don't have a choice in it."
While some memories and behavior remain with an Alzheimer's patient - songs, prayer and swearing often stay until the end, Snow said - many behaviors fluctuate or become modified as the disease progresses. Whatever curveball is thrown at a caregiver, she said, it's important to try and live in the moment.
"It's that constant disconnect between what was and what is," Snow said. "And people who can let it go and just be in the moment with the person where they are now are more successful as caregivers versus people who are constantly in that moment of regret, that moment of loss . . . You've got to let go of it and just be in that place. Not everybody can do it."