WASHINGTON Alexis McKenzies mother had mild dementia, but things sounded OK when she phoned home: Dad was with her, finishing his wifes 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, McKenzies father insisted. No, hed 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 Alzheimers Plan to help overcome this barrier to early detection, urging whats 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? isnt enough, says 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 its over, says Coleman. Thats not dementia-capable, or dementia-aware, primary care.
Family input should be mandatory, she told a recent council meeting. Its 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 dementias challenges.
More than 5 million Americans are estimated to have Alzheimers 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. 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 Alzheimers 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 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 hadnt realized their shared answers to standard check-up questions How are you eating? Has anything changed? simply werent true.
Its almost as if theyre sharing a brain. Thats how they get through a day, McKenzie says.
Sure, dementia patients stories can be believable.
It happens in doctors offices all the time, says Beth Kallmyer, vice president of constituent services at the Alzheimers Association. Thats why its 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 says. So an intricate description of, say, cooking last nights dinner may ring true because it was a real dinner, just not last nights.
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, such as the caregiving spouse getting sick, says Dr. Gary Kennedy, geriatric psychiatry chief at New Yorks Montefiore Medical Center.
How to get around the hidden-dementia conundrum?
Medicares 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 dont consider themselves experts at evaluating for Alzheimers disease, or dont feel comfortable, they can screen, Kallmyer says.
The governments Alzheimers advisers want doctors to steer families toward advanced-care planning, including designating a health-care power of attorney, as soon as dementia is diagnosed. Kennedy says early diagnosis gives patients a say in how they want to be cared for while theyre still capable of making those decisions.
A health-care proxy wont be used until the person is quite sick. So Kallmyer advises also signing whats called a release of information allowing the doctor to discuss the persons care with whoever is named right away.
Such steps are important, Kennedy says, because advancing dementia leaves people so unaware of their deficits 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.
Doctors can violate patient confidentiality if they believe the persons decisions or behavior has become a danger, Kennedy says.
McKenzie says her father would never discuss naming a health-care proxy, and her parents were furious that shed voiced concerns to their physician. She had to think up nonconfrontational ways to get invited back into their doctor visits: Ill drive you, and then why dont I take notes in case you have any questions later?
It turned out that McKenzies father had a noncancerous 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.