Caring Currents

11 Things You Have a Right to Expect at Doctor Visits for Dementia Symptoms

Last updated: Feb 24, 2009

Caduceus: Detail Of Giuseppe Moretti's 1922 Bronze "Hygeia" Memorial To World War Medical Personnel (Pittsburgh, PA)
Image by takomabibelot used under the creative commons attribution license.

My dad no longer goes to the doctor without one of his children present. We report the changes, take the notes, ask the questions. Dad, who has dementia, seems simultaneously attentive and oblivious in the exam room. One of the things I like best about his new primary physician is that the doctor looks right at Dad and talks to him first. After all, he's the patient.

Few experiences are as frustrating to those with dementia or Alzheimer's as being treated as if they're not in the room.

So it was interesting to see, "Talk to me directly, the person with dementia," listed first in the first-of-its-kind Principles for a Dignified Diagnosis just released by the Alzheimer's Association. Its goal is to help the medical community make the Alzheimer's diagnosis experience better for patients.

I think it's a terrific bill of rights for caregivers, too. These principles serve as a reminder of what you deserve to expect from a doctor when dealing with upsetting dementia symptoms -- both before and long after an actual diagnosis.

Here are the association's other 10 principles (and my own two cents about them):

2. Tell the Truth

One of my Dad's old longtime docs excused away his increasing symptoms of dementia because he didn't want to upset my parents. The doctors' credo "First do no harm" doesn't refer to hurt feelings. Full information is what makes people feel better.

3. Test Early

There's a groundswell toward earlier screening and more effective testing. It's really important to rule out other possible causes and figure out disease status. If the doctor just gives a nice speech and offers a prescription, prod for something more definitive.

4. Take My Concerns Seriously Regardless of My Age

Like earlier evaluations, this area is really starting to change, probably due to increased awareness of mild cognitive impairment and an uptick in diagnoses of early-onset Alzheimer's (in one's 40s, 50s, and 60s).

5. Deliver the News in Plain But Sensitive Language

Worth repeating: If you don't understand what a doctor said -- a term, a test, the whole shebang -- ask to have it repeated until you get it. (That's what you're paying for,)

6. Coordinate With Other Care Providers

Always ask the doctor to communicate with the person's other physicians (no matter what condition they treat). But know that you'll probably want to follow up and make sure at other appointments that everyone's on the same page about medication and new symptoms.

7. Explain the Purpose of Different Tests and What You Hope to Learn

Again – if you don't know what it's about, ask.

8. Give Me Tools for Living With This Disease

Ask the provider to point you to ongoing help. Most time-crunched MDs can only do so much, but they're usually plugged into a network of specialists and services. Use them as a starting place. (Better yet, ask the nurse, too.)

9. Work With Me on a Plan for Healthy Living

Make sure that just because your relative has a neurological disorder, the doc doesn't skip over the rest of the body. We're learning that lifestyle (exercise, daily activities) seems to slow disease progress in many people.

10. Recognize That I Am an Individual and the Way I Experience This Disease Is Unique

This one is as important for caregivers to keep uppermost in mind. Don't overgeneralize about what to expect. Keep focused on that person you love, not his or her disease.

11. Alzheimer's Is a Journey, Not a Destination

What more can I say?