Yay for early detection. Then what?

by mymothersbrain

There has been some significant good news in the past few weeks on the Alzheimer’s awareness front. First, President Obama made it official: he designated November as National Alzheimer’s Disease Awareness month. In an effort to reach Latinos, The Alzheimer’s Foundation of America (http://www.nationalmemoryscreening.org) has been offering free, confidential memory screenings en español in Chicago, Los Angeles and New York. And in a huge step toward early detection, the Centers for Medicare and Medicaid Services announced that beginning in January 2011, a provision of the Patient Protection and Affordable Care act will include an annual wellness benefit for all Medicare beneficiaries, with a mandatory part of this wellness visit being an assessment to detect cognitive impairment. This is especially important because age presents the greatest Alzheimer’s risk and the first baby boomers will begin turning 65 next year.

As someone who has seen Alzheimer’s in my husband’s grandmother, then my mother-in-law, and now my own mother, I see these as baby steps in a very long journey. Early detection is great. I’m all for it. But what happens after you get the diagnosis? My mother-in-law was largely in charge of her own mom, though John and I helped out with the move from her home to residential care, and then a change to another facility later.

When my mother-in-law began showing symptoms, we didn’t know that we could call the Alzheimer’s Association or the Alzheimer’s Foundation of America for help. She had the finances to cover her care, but we could have used some guidance on what to expect on a very practical level regarding everything from how to implement a POA to what to do when she was hallucinating.

We had even less help with my mother, who has very little in the way of financial resources. I clearly remember after my mom’s first cognitive assessment, the neurologist sent us away from his office with orders for some other studies — an MRI or some other kind of scan. He promised to let us know the results, and at some point he did notify us that my mother had suffered a transient ischemic attack, a mini-stroke, but that was the last contact we had with him for a while. He did not prescribe any medicines, and he did not return our calls for weeks. My sister left multiple messages for him because we had questions. About Mom’s final diagnosis. What was it? If in fact, it was the dreaded Alzheimer’s, what was next? My sister ultimately spoke to every single member of the doctor’s staff, and even finally received the Alzheimer’s diagnosis from a receptionist who pulled my mother’s chart and told us what the doctor had written.

We immediately found another neurologist, but sadly, I believe our family is not alone in this experience. Especially when it comes to walking away from the diagnosis with a list of resources that might help on the long road ahead. For that reason, I am always a bit ambivalent about any news regarding Alzheimer’s awareness, no matter how good it is. The fact is that early detection won’t do much good if we aren’t going to couple that with giving families the tools they’re going to need. And I don’t just mean helping them access services such as personal care companions or home health aides — for my family, a listening ear would have gone a long way. If memory serves, that first doctor didn’t even refer us to the Alzheimer’s Association. (Mind you, after I finally reached him and told it was unacceptable to have his receptionist give us a diagnosis that was his responsibility, he refused to speak to me anymore.)

I realize that doctors are struggling. I have no clue how difficult it is to negotiate the maze of medical reimbursement that they are faced with, though I bet it significantly cuts into the things they’d rather be doing, like helping patients. There isn’t an easy answer to this. And it’s not just up to doctors, either, I know that. Families, especially those of us who are in higher risk categories, need to be on alert. When at the doctor’s office, we need to be bold and ask questions, don’t just leave everything up to the doctor. But let’s acknowledge that patients need more than that early diagnosis — they need help formulating a plan for what comes next.

What I remember after changing doctors is thinking that my family would be OK in the long run. Because I’d dealt with dementia before and because even if this doctor didn’t give me the information I needed, I had the will to do the research and find it myself. But what about those other people sitting in the waiting room that day we were there? I can’t help but wonder if they ever got the answers that they needed.