JOAN’S WEEKEND BLOG – MAY 13-15, 2011 - DOCTORS, LISTEN TO THE CAREGIVER!

One of our members has been trying to raise awareness about Alzheimer’s Disease, its impact on caregivers and patients alike, and particularly that it can strike at a far younger age than most lay people and professionals are aware. He has been writing for medical journals, so you may not be familiar with his essays. Recently, his “essay” written for the Journal of Family Practice, was not accepted as an essay entry, but was printed as a “letter to the editor”.   His points are not only valid; I think they are vitally important, and I urge everyone to send a copy to every health professional who deals with their spouse.

Forget the mental status test—and learn to listen

My wife was diagnosed with Alzheimer’s disease (AD) at age 63. Unfortunately, her AD went misdiagnosed for several years while I repeatedly tried to convince her doctors that she was experiencing dementia. For 3 years, doctors administered the Mini-Mental State Exam (MMSE) and other cognitive tests, but she consistently did very well (on one occasion scoring 29 out of a possible 30 on the same day that she couldn’t remember our granddaughters’ names). An MRI of her brain showed no definitive signs of AD. Thus, she was treated for stress, anxiety, and depression, although I told both our primary care physician (PCP) and a neurologist that her symptoms couldn’t possibly be due to any of these conditions.

I documented my wife’s behaviors in weekly logs and brought copies to each visit, but invariably my notes went unread or were quickly dismissed. When I told the PCP I thought the medications prescribed by the neurologist weren’t working because she was declining further, he deferred to the specialist, who advised us to “stay the course.” Finally, I convinced my wife to see a psychiatrist affiliated with a major medical center who requested copies of my logs even before our first visit.

At that visit, the psychiatrist interviewed us at length, reviewed previous tests, and administered his own cognitive, physical, and neurological tests. He then ordered a new battery of tests and referred us to his facility’s AD center, where my wife finally received a diagnosis of early-onset Alzheimer’s.

Doctors can improve their chance of accurate diagnosis simply by listening to the spouse or significant other. One recent study found that the AD8, an 8-question, 2-minute screening test given to a close friend or family member, was superior to conventional testing in its ability to detect signs of early dementia.

Although doctors can’t identify the cause of AD or offer hope for a cure, early diagnosis is important. The sooner the patient starts taking medication designed to help slow the degenerative progression, the more effective the drugs may be.

So please, doctors, if a family member or loved one reports worrisome symptoms of possible dementia, listen carefully. The observations of someone close to the patient just may be more accurate than any screening test you could give.

Allan Vann
Commack, NY
Reference

1. Galvin JE, Fagan AM, Holtzman DM, et al. Relationship of dementia screening tests with biomarkers of Alzheimer’s disease. Brain. 2010;133:3290–3300.

The Journal of Family Practice ©2011 Quadrant HealthCom Inc.

Just because someone passes the Mini Mental Test, it does not mean there is nothing wrong with them. My husband’s acing of that test is documented in many of my blogs, yet he is clearly in the middle stages of Alzheimer’s Disease in cognition, memory, judgment, reasoning, and processing.

No one knows our spouses' personalities, behaviors, and abilities better than we do. If we think something is wrong, and we ask for an evaluation by a memory disorders specialist, PLEASE LISTEN TO US.

As long as you reference Allan and this website, you have permission to print this blog and send it to all of your health professionals. Let your voice be heard.

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The Alzheimer Spouse LLC
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