Specialists push for first National Alzheimer’s Plan to help overcome barrier to early detection

Then their phone service was cut off. “I mailed that check,” McKenzie’s father insisted. No, he’d mailed the phone company a bank deposit slip instead. McKenzie visited and discovered spoiling food. Dad the caregiver was in trouble, too.

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. Now specialists are pushing for the first National Alzheimer’s Plan to help overcome this 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.

For a doctor to ask someone with brewing dementia, “How are you?” is not enough, said Dr. Laurel Coleman, a geriatric physician at Maine Medical Center who is part of a federal advisory council tackling the issue.

“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.”

Family input should be mandatory, she told a recent council meeting. It is 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.

The question is how to square that input with patient confidentiality, especially if the person never filed the legal forms clearing family members to intervene, as happened with McKenzie.

Plus, regularly seeking that input takes more time than the typical 15-minute visit and is poorly reimbursed, notes Coleman. But she says more primary-care physicians are starting to be trained in dementia’s challenges.

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 as many as 16 million by 2050. The Obama administration is drafting a national strategy to try to slow that coming avalanche — with research aiming for some effective treatments by 2025 — plus find ways for struggling families to better cope today.

Step 1 is earlier detection. McKenzie directs an Alzheimer’s assisted-living facility in Washington, D.C., so she knows about dementia. Still, it took some sleuthing to determine how much her 82-year-old parents, living a few hours away in Maryland, were deteriorating. She said 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 — How are you eating? Has anything changed? — simply weren’t true.

“It’s almost as if they’re sharing a brain. That’s how they get through a day,” McKenzie said.

Sure, dementia patients’ stories can be believable.

“It happens in doctors’ offices all the time,” said Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association. That is why it is 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.