Dementia should be detected by family earlier, experts say

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(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.

[JavMD]

it's sad, not a way to 'die'. My Dad was a WWII vet, in the Pacific, he started talking about it more and more. Then he got the daily news mixed up with his hobby activities and soon became delusions (of a person trying to kill him (and Mom) and anyone who came to help (son's). That was at age 84. Which he had a good retired life but it just isn't the way to 'die'.

Now as a son, i'm only 59 and I think its happening to me. Why see a doctor when there is NO CURE. I'm trying to get my life in order as best as possible so my kids can help their Mom. Activities are getting tougher to remember (how to do). I find myself getting 'anxious' if I can't. etc etc.

Not good but I accept ...it is just the way it is.

[jsf14]

In many, many cases the patient does not want to know. Really, really does not want to know. When s/he finds out s/he is devastated -- depressed, angry. The only good knowing does is to get the patient (maybe) to do things like stating wishes for longterm care. To be sure, that helps the family. In a very, very few cases the patient does have something treatable like the brain tumor in the article. Mostly, though, the diagnosis just tells the patient, "You are going to be less and less what you want to be. You are soon going to be like all those Alzheimers patients that you were afraid of being like." So what medical purpose does early diagnosis have? None that I can see.

[mjbrin]

how amazingly ignornorant.....
what purpose?
proper care and treatment is what!
which can be proper housing, healthy food, and above all safety!
and is for the patient! for the family? some relief and support....but they still must watch their loved one deteriorate at the minimum they are able to make their loved ones life a little more safe and comfortable

[facelessdrone2005]

I agree and just went through this with my own mother. She was in perfect (physical) health, but the ALZ symptoms just kept popping up. She hated doctors and what was the point in trying to get her to a neurologist to get something official to say she had ALZ? I knew she wasn't going to agree to take Aricept because she hated pills all her life ... it was still HER life to live. So all I could do was convince her early on while she still knew what she was doing to sign a power of attorney. I was able to use that to get caretakers, er, "friends," who stayed with her and kept her out of trouble while she continued to live at home and enjoy life as she wanted for as long as she could. Eventually we got an official diagnosis that she had severe dementia and just couldn't function at home any more, and she had a fall which told me it was now too dangerous to leave her at home. Now she is in the nursing home and oddly seems to kind of enjoy the company. Sometimes I wish I had given her Aricept earlier, but the doctors say that wouldn't really have changed anything. An official diagnosis would, as you say, have just pointed out to her that she was "going to be less and less what you want to be." This way at least she was home and comfortable and enjoying life as long as possible.

[red_robin]

Trying to get a doctor to listen to the family is challenging. My mom, my sister and I all knew that my dad was losing his memory. Even my dad knew it. the doctor's test? 'Remember these 5 words, and I'll ask you again later." Dad passed, no problem. Wrong! Dad rapidly declined into senility afterwords and died within 2.5 years. Doctors need to listen!

[jsf14]

Sad story. But if the doctor had listened, what would have been different for your dad and your family? Your dad still would have deteriorated and died. You would have had an official name for his condition, that's all.

[red_robin]

jsf14, Based on your comment, why bother to diagnose at all? All people die eventually! The difference would have been that there are meds for mild to moderate dementia that he could have tried. My parents could have talked more about advanced planning. And...having an official name for his condition would have helped my mother accept what was happening.

[joe1022joe]

All too often the motivation for the relatives concerns is in proportion to the size of the parents bank account. Don't want those pesky old folks spending that inheritance that ought to come to us, do we? Even if it is their money.

[MyBrainTest_org]

There are a number of simple, well validated paper tests for detection of cognitive impairment that family members can use: http://www.mybraintest.org/download-tests-for-memory-loss-alzheimers-dementia-mci/

MyBrainTest.org
Research & Analysis

[PourpaixPourpaix]

The problem is that the Medicare wellness visit is voluntary. Nobody asks for it because of the obvious down side. Incapable people don't want to be institutionalized.

My elderly neighbor has gone off the deep end. Rants and raves his extremist conservative views at everyone, then intimidates his neighbors in an attempt to enforce his view that the neighborhood must recognize his "weaknesses" (i.e., home delivery of recreational drugs and prostitutes). With brain damage from a lifetime of drug abuse, he can barely walk when he emerges from a two-day bender. His family complains of a messy house and the stove is always left on, but won't say anything to authorities out of fear they will be forced to pay for his institutionalization. And if authorities come to the door, he just doesn't answer. No legal route to intervene. Police come while the drug dealers are administering their "medicine", but nothing can be done if it's all accomplished in the privacy of his home.