Families can help detect dementia

WASHINGTON – Alexis McKenzie’s mother had mild dementia, but things sounded OK when she phoned home: Dad was with her, finishing his wife’s sentences as they talked about puttering through the day and a drive to the store.

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?” isn’t 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’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.

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.

The Obama administration is drafting a national strategy with research aiming for some effective treatments by 2025 – plus finding 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.

“It happens in doctors’ offices all the time,” said 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 explained. 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, said 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. “Even if primary-care physicians don’t consider themselves experts at evaluating for Alzheimer’s disease, or don’t feel comfortable, they can screen,” Kallmyer said.

• The government’s Alzheimer’s advisers want doctors to steer families toward advanced-care planning, including designating a health care power of attorney, as soon as dementia is diagnosed. Montefiore’s Kennedy said early diagnosis gives patients a say in how they want to be cared for while they’re still capable of making those decisions.

• A health care proxy won’t be used until the person is quite sick. Kallmyer advises also signing a “release of information” allowing the doctor to discuss the person’s care with whoever is named right away.