Recently I interviewed Dr. Ahmad Sajadi, at University of California, Irvine Institute for Memory Impairments and Neurological Disorders, a nationally recognized Alzheimer’s research center. Running out of time, here’s the question he never answered: Why be diagnosed with dementia early if there’s no cure?
At 88, my friend Marilyn’s doctor suggested a cognitive assessment diagnosing the possible onset of dementia. Marilyn told him, “I don’t do that test.”
As my aging father’s caregiver, I learned to agree with Marilyn. In 2001, I took my dad to a neurologist. “Draw a clock, name the presidents in order, count backwards,” the doctor commanded. My father, who died seven years later of Lewy body dementia, did better answering the questions than I, trying to answer them in my head, as I sat behind him. I freeze when put on the spot, would flunk that cognitive test. Besides, if diagnosed with the possible onset of dementia, I’d be terrified by my usual forgetfulness.
The particular neurologists my father visited were careless with his feelings. One swept in, a nurse at his side, and mumbled something like, “You may have Alzheimer’s,” then swept out, leaving my father in fear.
The doctor’s comment set us adrift with unanswered questions. Another insisted upon asking my father to complete tasks requiring eyesight, ignoring my repeated entreaties, “My father is blind.”
Why would I want to subject myself to a test of my neurological future?
Arguing with my “head-in-the-sand” approach, Dr. Sajadi named three forms of dementia and made a case for early diagnosis.
Alzheimer’s. Diagnostic tools include a specialized brain MRI which shows brain shrinkage; a PET scan showing amyloid protein plaques in the brain. These methods leave us better equipped to pinpoint Alzheimers than clinical tests, so we can use medication to improve cognition and help control agitation.
Lewy body dementia. There are no scans for underlying causes. We suspect Lewybody if people hallucinate, have movement problems similar to Parkinson’s, and general trouble walking. There are medications minimizing hallucinations, preventing falls and daily mood fluctuations.
Prefrontal dementia. Diagnosed when patients lose interest in family members, act strangely, and have increased appetite for sweets. Knowing the diagnosis helps family members who might have blamed a relative for behavior he or she cannot control.
And then, Dr. Sajadi was out of time. Respecting his explanations, I was still not motivated to be diagnosed.
Next I looked at research to convince me that I might want to take the dementia diagnostic test. The Alzheimer’s and Dementia Alliance of Wisconsin provided the best reasons.
Dementia symptoms may be reversible. Some medications cause symptoms mimicking dementia. Analyzing dose and type of meds could return a senior to normalcy. Of particular concern is polypharmacy (patient on several drugs). An NIH 12-year-study says “polypharmacy is significantly associated with incidence of dementia.” Seniors accumulate prescriptions which they are less able to metabolize, so interactions must be analyzed regularly.
Even if irreversible cognitive decline is diagnosed, symptoms are treatable.
Diagnosis is more accurate early, while the patient is still able to describe symptoms.
Early diagnosis allows the patient to make decisions regarding legal, financial and long-term care.
The patient has time to refocus, concentrating on life’s top priorities.
Early on, the patient can join support groups, learning coping strategies for stages of dementia.
A patient may participate in clinical trials with the satisfaction of contributing to future treatment.
Knowing dementia is the reason for a family member’s behavior keeps the family focused upon help, rather than criticism of out-of-character actions.
Would I take that neurologic test in the doctor’s office? Joshua Grill, Director of UCI’s institute puts it this way, “[Treatment] may only be effective if started very early in the disease process.”
Do I remain in agreement with Marilyn who doesn’t “do” dementia screening?
Knowing dementia symptoms may be solved by a change in meds, and that the only hope of control over an uncontrollable disease is to plan while I am able, yes. But, I would submit to testing only at a proven research institution such as UCI, dedicated solely to diagnosis.
Dementia is a lonely disease. Early diagnosis makes sense to have as much control over my own future as possible.
Carrie Luger Slayback an award-winning teacher and champion marathoner, shares personal experience and careful research. Contact her at carrieslayback@gmail.com.
