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Kavan is a social media entrepreneur committed to growing the use of social networking towards promoting the equality, sustainability, health and well being of people of all ages. Combining careers as a national journalist and public relations expert, Kavan focuses on the power of user-generated content to communicate ideas and build movements.

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  1. Al Power
    Al Power at | | Reply

    I agree that we need a more positive message, but “hope” is a tricky thing. The way hope is usually presented with Alzheimer’s is that “a cure is just around the corner, of only we funnel a few more dollars into drug research”. But close scrutiny of the mechanisms of dementia and its association with aging of the brain and vascular system suggest that this is false hope at best.
    More important is to highlight the potential for millions of people with dementia to live positive, engaged and meaningful lives, when we better understand how to support them and enhance their well-being.
    Will more effective treatments be forthcoming down the road. I believe so. But I don’t believe there is a magic bullet. Unless we go “Logan’s Run” and start killing everyone off at 30, dementia is with us to stay. The big question is, how are we going to help those who live with us continue to thrive, as we do with any other chronic illness or disability?

  2. Kavan
    Kavan at | | Reply

    Hopefully you’ve all heard of the documentary Alive Inside featuring Dr. Bill? Here’s a nice popular culture inroad to dementia/Alzheimer’s awareness and quality of life advocacy featuring Kenny Chesney:

  3. Rachel
    Rachel at | | Reply

    Considering the upcoming Baby Boomer influx into retirement, won’t we see a corresponding increase in dementia research funding? We shoudn’t have to wait that long, but that may be what’s needed.

    1. Mike Wasserman
      Mike Wasserman at | | Reply

      I wish this were so, but the Baby Boomers will be in denial regarding Alzheimer’s and won’t necessarily push for such funding. You are right, though, that it would make sense!

  4. tinahackel
    tinahackel at | | Reply

    YES! And this morning I’m gonna talk with a family physician about the difference between using drugs to “treat and slow down the disease” and more drugs to deal with the side effects – and/or provide this 86 years old woman who’s generally quite healthy with as much psycho-social support as possible, and about how to live outside the stigma! – Wish I had known what Richard Taylor and Al Power have taught me since I’ve been my husband’s care partner! We kept having a good time but it could have been even better without the drugs and more money to spend instead for Alex’ happyness! Just fund and shared your blog via Richard on FB, Tina, from Switzerland

  5. Michelle J.
    Michelle J. at | | Reply

    I think that legislators and their staff in particular need to hear from more individuals who are living with Alzheimer’s. One of the challenges of this disease (compared to AIDS, cancer, heart disease, etc.) is that beyond the early stage of the disease, it becomes very difficult for people with Alzheimer’s to speak out about their experience. The most powerful meetings I’ve had with legislative staff have been those meetings were our group included a person with Alzheimer’s, who could share his/her experience.

  6. Mike Wasserman
    Mike Wasserman at | | Reply

    Actually, Kavan makes a very rational point. We may not like it, but it could be true. The marketplace doesn’t like negatives. It likes hope. While there are succesful movies where the main character with cancer dies, we tend to like the ones where they beat the disease. Magic Johnson has been a great advocate for HIV. Lance Armstrong, similarly for cancer. The comment about Richard Taylor is a good one. Is branding the right word? I don’t know, but dementia isn’t an easy disease for which to galvanize positive public opinion. I think that we need to take this article to heart and think of ways of positively portraying the isssues surrounding Alzheimer’s. At the same time, we need to deliver the message regarding the importance of confronting this disease head on. There is certainly an ageist bias against dementiaand other diseases of advancing age. By avoiding the issue, maybe it won’t happen to me, may be the way most people respond. Again, we may not like that, we may not fully understand it, but it may be the problem. So, let’s take Kavan’s point to heart and think of better ways of promoting the issues surrounding Alzheimer’s Disease!

  7. Rob Allen
    Rob Allen at | | Reply

    Thank you Kavan for recognizing this Alzheimer’s branding concern. It is something I have felt for years! It’s true, Alzheimer’s is a lousy disease, filled with grim statistics and heartwrenching stories. But, what is not publicized enough is the incredible work done by the Alzheimer’s Association to help the families that are affected by this hideous disease and to raise the millions of dollars that make the Association a primary funder of research into a cure. That is the message that needs to be sent. My thought has always been that people would much rather donate when they see the positive things their money can do for a cause instead of being frightened by scary statistics. We can only hope that the marketing decision makers will get that message. Unlike curable diseases, Alzheimer’s disease does not have the face of a survivor on whom to rely for publicity purposes. But there are thousands of families who have survived the ordeal because of the work done on their behalf by the Alzheimer’s Association. Let’s let people know!

  8. Jim Rogers
    Jim Rogers at | | Reply

    You are absolutely correct, Sarah … And that’s exactly why I use words such as “horrific” to describe this disease. Memory loss is merely one of the early symptoms of AD. In its final stages, AD shuts down most bodily functions — including the ability to digest food and breathe. Often times death results from some other AD-related complication, such as pneumonia. I don’t know how others may feel, but I think starvation and/or suffocation are rather horrific ways to end life.

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