The Empowered Elder Advocate: We Won't Be Brushed Aside

  • Many of us are old enough to remember the accepted thought that the doctor was always right. We were trained to bow to the superior knowledge of the doctor, because after all, why would you go to the doctor if you already knew all of the answers?


    We still see doctors because of their expertise, of course, but we are learning to be a partner in health care. In my opinion, a good doctor will welcome our input because the more they know about us or the person we are advocating for, the better they can be at helping us.


    Since, with some notable exceptions, most of us on OurAlzheimer's are here because we have a loved one with dementia, it often falls to us to be the advocate for our loved one's health. This is particularly true as dementia symptoms increase.

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    Whether we are our own health advocate or are advocating for a loved one, a recent survey shows people are, as a group, getting more involved in health care.


    Chris Schroeder, CEO of HealthCentral, and James Burroughs, Associate Professor of Commerce at the  University of Virginia, presented "Understanding What Motivates the Empowered Patient," on April 8, 2010 at the DTC Conference in Washington D.C.


    "Understanding What Motivates the Empowered Patient," gives health providers an idea of what they can expect from empowered patients. Some points from the presentation:

    • The tendency to want to be in the driver's seat extends to an empowered patient's relationship with her doctor. In our survey, we asked if changing doctors was a viable option. Empowered patients were much more likely to find a new physician if they felt their current doctor was not managing their condition well enough.
    • They are more likely to change doctors, but once they've found a person they can work with, they are more likely to stick with that provider.

    Tips to medical providers were, in my opinion, excellent. These tips put into concise language exactly what many of us, as care advocates for people who can't speak for themselves, want from health care providers:

    • Look at the ratio of quantity of information and return on information. Empowered patients want just enough information to make a good decision but not so much that it becomes overwhelming to sort through it all.
    • Watch out for complexity and redundancy
    • Consider the style of these communications. If empowered patients feel they are being talked down to or not taken seriously, they will reject the message.
    • Watch out for patronizing tone and fit with personal experience.

    Don't you just love the last one? I'm repeating it, just in case anyone misses it the first time. "Watch out for patronizing tone..."


    How many of you caregivers have sat with your loved one in a doctor's office and, after describing everything from mom getting lost driving home from the store she's gone to for decades to her paranoia about her neighbors, had the doctor say, "Look, this is just a reality of age. Stop worrying about your mom, and accept that she's getting old."


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    You've researched the signs of Alzheimer's and other dementias. You've consulted with family members about your mother's decline and strange personality changes. You've been scared out of your wits because she's wandered off and you had to call the police. And this doctor tells you that she's just getting old. Do your best and realize that you can't stop the aging process.


    You know from your research that drugs are available to help slow the process of Alzheimer's. You know that vascular dementia is generally related to other vascular disease. You know these are real medical problems that are not just normal aging. You are mad, and rightfully so. When you are brushed off by medical people, whether it is your own health or as an advocate, it's time to change providers. There are many doctors, now, who welcome an empowered patient or patient's advocate.


    When it comes to dementia, since many types are tough to diagnose, and people can have more than one type at a time, seeing a family doctor for a good physical exam is vital. Then, if there is no sign of infection, medications are cleared of suspicion, and nothing else is found that could cause dementia-like symptoms, see a specialist. If that specialist brushes you off, well, get another opinion.


    Get in line with the people who responded to this survey about empowered patients. The quality of life of your loved one may depend on your own gut-level conviction about the care provided by the doctor you or your loved one see.


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Published On: April 17, 2010