Writing About Alzheimer’s and Dementia Gets Complicated

Now that I have spent three days listening to expert neurologists, demographers, caregivers, and policy people talk about Alzheimer’s, I come away from the meeting with a sense that the story is complicated, and that I hope it is not reduced to talking points and sound bites. I didn’t feel that it was at the meeting, but I can see how reporting could go awry, and not really help readers or society out.

I don’t want to cover Alzheimer’s disease pursuing the “awareness” route, namely pressing how many millions of Americans have the disease, and how unabated, with the graying of America, these numbers will rise astronomically. There is no cure for Alzheimer’s disease. Existing drugs are not all that beneficial, and when they help alleviate symptoms, it seems to be for a very brief window, in a subset of patients, that nobody has convinced me you can predict. Are we at square one? Should we grab at any way to mobilize the troops for the disease?

There’s more negative news: clinical trials for years have been negative and clinical trial enrollment is poor. Can it be improved? Should I promote enrollment in clinical trials? What might a patient gain from participating in a clinical trial? What about informed consent? How do patients with Alzheimer’s disease give informed consent?

Is using amyloid as a biomarker something that should be abandoned because reductions in amyloid have not shown improvements in the disease? What is the state of the science?

What about labeling patients with mild cognitive impairment or Alzheimer’s? Is mild cognitive impairment an entity that is meaningful, or should it be discarded? Some speakers at the Alzheimer’s disease forum were skeptical about the classification, which is not used in many parts of the world. Will mini-screens being in primary care offices become popular because experts and advocacy groups say that they will reduce stigma and work effectively? Under what conditions, could Alzheimer’s disease be overdiagnosed? Remember, older people are on many medicines, they can have electrolyte problems, hearing problems, and other conditions that could impact on diagnosis.

What kinds of protections are in place for people? There is a big push by pharma and the Alzheimer’s Association to be certain to record an Alzheimer’s disease diagnosis in a medical record. That may seem relatively innocuous for old, retired people, but could some people lose jobs, lose health and long term care benefits, be barred from housing? What is the upside to getting a higher count of Alzheimer’s patients? Do the benefits outweigh the risks?

I also think that battles over Medicare need to be discussed with the possibility that many more Americans are likely to be afflicted with Alzheimer’s. Where will they get care? How do Americans want it to look? Will Alzheimer’s patients be warehoused? Can community programs manage people with end-stage Alzheimer’s?

Should innovative non-drug approaches in the arts be funded more widely? How can we reduce stigma about Alzheimer’s disease? I’d like to know a lot more about what is happening today to people with advanced Alzheimer’s disease. Can they find placements? Where? What are equitable ways to fund Alzheimer’s and dementia care?

Long Term Care

How should the country support long-term care? Should children be taught, as they are in lower school, in some parts of Japan, about caregiving, dementia, and Alzheimer’s? What about minorities, lesbian, gay, bisexual, and transgender people with Alzheimer’s? What about aging single people, who are all over America, and growing around the world? What services are available for them? How will we plan for them?

Alzheimer’s disease issues do not exist in a vacuum.

People should be aware of all of these issues, as people think through a national plan for Alzheimer’s disease and think through federal and state policy. I am intrigued that some countries have national plans for Alzheimer’s and I hope to write about them. Perhaps they will be instructive for the US. Far more patient stories need to be told to understand the complexities.

6 thoughts on “Writing About Alzheimer’s and Dementia Gets Complicated

  1. You are raising interesting points. Two questions I have: How do you distinguish between Alzheimer’s and senile dementia?
    From what I understand, the only way to diagnose Alzheimer’s is after death, with an autopsy.
    Also, I once read that some people on whom autopsies were performed and who had brains riddled with amyloid plaque actually showed no symptoms of Alzheimer’s during their life time. Like, none at all. Are you familiar with this study?

  2. You raise excellent questions, Laura. Here’s another: when a person has been diagnosed with Alzheimer’s and there is no known cure, what do we do about their general health care?

    I just lost my mother to Alzheimer’s (the complications arising from it). Until she went into hospice care she was on a host of drugs, including cholesterol-lowering meds and HRT (she’d had a hysterectomy 25 years earlier). Medicare (that’s us) paid for these drugs for ten years. Her primary care physician apparently never questioned continuing these meds; she never had that conversation with my father. I wondered, what exactly were we saving Mom’s heart for? What harm would hot flashes be at this point?

    I think at this stage of knowledge of the disease, we (including physicians) need to accept that keeping an Alzheimer’s patient as comfortable (psychologically as well as physically) as possible is about all we should be doing just now. That is pretty challenging in itself. I wonder how much money is wasted on drugs that prolong an agonizing and terminal stage of a person’s life – as well as the costs of the person’s life. Mom would have much rather seen those funds go to schools, libraries, or some other way to benefit society. But nobody gave her that option.

  3. Another issue is that the Genetic Information Nondiscrimination Act (GINA) would protect people who have Alzheimer disease due to a known mutation, but not those who have the symptoms of Alzheimer’s who do not have a known mutation or who haven’t had a genetic test. This issue arises with breast cancer, too — GINA is imperfect in this way. Were there any talks about genetic testing? I would never want to know that Alzheimer’s is in my future, but judging from my students (I teach a “genethics” course at Albany Medical College), I am in the minority.

    1. Unfortunately, there was not a very substantive review of genetic testing or ethics related to detection, diagnosis, labeling of Alzheimer’s. I wonder whether there is an age difference in how people view knowledge about predisposition. I too would not want to know, especially in the current scenario of no really great treatment.

  4. I’ve just interviewed neurologists who are investigating treatments that target the amyloid plaques in the brain that characterize Alzheimer’s. They are getting promising results and think that their could be effective treatments for AD in the next decade. AD researchers feel a great urgency to find effective AD treatments in light of projections of dramatic Alzheimer’s growth in the coming years.

  5. Laura, a great article. My Mom died from Alzheimer’s, which I can say with as much certainty as medical science allows, because we had a brain autopsy done. The neurologist urged us to do the autopsy because, he said, now we treat people with any kind of dementia in much the same way. In the future, however, dementia from different causes may respond to different treatments. He thought that my sister and I — being, according to him, six times more likely than the general population to develop dementia — could benefit by being able to tell doctors exactly what Mom had, and what, therefore, we were likely to have if we develop dementia.

    I’d like to add to the confusion by suggesting that we think of Alzheimer’s similar to the way we think of cancer or developmental disabilities: how bad? what kind? stage? prognosis?

    What I’m getting at is that a diagnosis of (probable) Alzheimer’s doesn’t tell you much about the course the disease will take. My mother was reasonably happy, and certainly comfortable, in a nursing home until she actively began dying, and her death was peaceful.

    My Dad’s boss died of apparent Alzheimer’s a couple of decades before. He tore his clothes off, screamed obscenities, and smeared feces for at least a couple of years before dying, to his wife’s enormous relief.

    Any notion of how to treat the person w/ Alzheimer’s depends, I think, on how the Alzheimer’s presents itself. In some ways, I’m less afraid of it–or at least less horrified by it– than many other people are because of seeing how it presented itself in my Mom. I’m more afraid about how I (as a single person, no kids, as you so astutely discerned is a separate and growing population) would be treated.

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