Dementia should be detected by family earlier, experts say

(AP) "How are you?" the doctor asks a patient with brewing dementia. The patient answers that she is fine. But is this enough?

According to Dr. Laurel Coleman, a geriatric physician at Maine Medical Center, it's not. "So often I hear, "The doctor only asks my mom how she is. She says fine and it's over,'" Coleman said. "That's not dementia-capable, or dementia-aware, primary care."

Dr. Coleman is part of a federal advisory council tackling the issue of dementia care. Coleman and some specialists are pushing for the first National Alzheimer's Plan to help overcome the barrier to early detection, urging what's called dementia-capable primary care, more screenings for warning signs and regular checks of caregivers' own physical and mental health.

Dementia can sneak up on families. Its sufferers are pretty adept at covering lapses early on, and spouses are sometimes there to compensate. Doctors too frequently are fooled as well.

Family input should be mandatory, says Coleman. It's the only way to know if the person really is eating and taking her medicines as she claims, and not forgetting to turn off the stove.

More than 5 million Americans are estimated to have Alzheimer's or similar forms of dementia, although as many as half may not be formally diagnosed. With the rapidly aging population, the toll is projected to reach up to 16 million by 2050.

Alexis McKenzie, who directs an Alzheimer's assisted-living facility in Washington, shares that her mother had mild dementia. She would call home to check up on her mom, and things sounded OK, because her dad was there. But after her parents' phone service was cut off, McKenzie visited and discovered Dad the caregiver was in trouble, too, mailing the wrong check and forgetting to throw out food.

McKenzie says her father refused any assistance in caring for her mother, and together the couple put up such a good front that even their regular physician hadn't realized their shared answers to standard check-up questions simply weren't true.

"It's almost as if they're sharing a brain. That's how they get through a day," McKenzie says.

"It happens in doctors' offices all the time," says Beth Kallmyer, vice president of constituent services at the Alzheimer's Association. That's why it's crucial that family members are part of the screening process.

The diseased brain may not be able to pull up a recent memory, but longer-term memories remain, she explains. So an intricate description of, say, cooking last night's dinner may ring true because it was a real dinner, just not last night's.

And a long-married couple in a familiar routine and surroundings can appear far more normal than they really are - until something upsets that balancing act, like the caregiving spouse getting sick, adds Dr. Gary Kennedy, geriatric psychiatry chief at New York's Montefiore Medical Center.

How to get around the hidden-dementia conundrum?

-Medicare's new annual wellness visit pays for cognitive screening, simple tests that signal who should be referred for more extensive brain exams.

-The government's Alzheimer's advisers want doctors to steer families toward advanced-care planning and early diagnosis, so patients have a say in how they want to be cared for while they're still capable of making those decisions.

Such steps are important, Kennedy says, because advancing dementia leaves people so unaware of their needs that they can take family or doctor input "as an affront." He always asks new patients if he can fill in their loved ones, or invite them in from the waiting room, as a way of starting that conversation.

McKenzie says her father would never discuss naming a health care proxy and her parents were furious that she'd voiced concerns to their physician. She had to think up non-confrontational ways to get invited back into their doctor visits: "I'll drive you, and then why don't I take notes in case you have any questions later?"

It turned out that McKenzie's father had a non-cancerous brain tumor causing his own gradual dementia symptoms, which started becoming apparent with the phone mix-up, unrefrigerated food and eventually delusions. Finally, she had to go to court to get her parents the care they needed in an assisted living facility near their hometown.