Comments on: Alzheimer’s Awareness: Why Bother ? http://takingcareofthefolks.com/alzheimers-awareness-why-bother/ education~encouragement~engagement Tue, 07 Feb 2012 06:04:23 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Shelley http://takingcareofthefolks.com/alzheimers-awareness-why-bother/comment-page-1/#comment-1410 Shelley Thu, 13 Oct 2011 18:06:41 +0000 http://takingcareofthefolks.com/?p=733#comment-1410 I absolutely agree with you that an early diagnosis will enable people to get their affairs in order and may prevent dementia sufferers from being scammed. My own father purchased a truck and had it delivered while I was at work (he was not supposed to drive) AND sold his lakeside home for 100 thousand dollars less than market value before I could obtain conservatorship/guardianship for him. My concerns about early diagnosis are twofold. I'm worried that an early diagnosis will elicit prejudices against the indivual who was diagnosed. Will their employment be cut short even when they are still capable of making appropriate decisions? They will definitely be under the microscope by their employer (We might watch this play out in the case of Tennessee women's basketball coach, Pat Summitt). Also, what will happen to the insurance rates of the person with the early diagnosis? Insurance companies are acutely aware of the cost of Alzheimer's care and I can't imagine that (just like in the case of those diagnosed with HIV) they won't find a way to raise the rates so much as to become unaffordable or disqualify them in some way. My other concern is in regards to powers of attorney and conservatorship/guardianship. I believe that there needs to be something in between these two options. Powers of Attorney are easily revoked (and probably will be revoked at the time they are needed the most). Conservatorships/Guardianships are difficult to obtain(although maybe not difficult ENOUGH) and literally remove any individual decision-making rights that the diagnosed person once had. Unfortunately there's no perfect answer. There is no cure and really no effective treatment, but we must continue to advocate for the vision of a world without Alzheimer's Disease. Thank you so much, Sonia, for sharing your story. Shelley I absolutely agree with you that an early diagnosis will enable people to get their affairs in order and may prevent dementia sufferers from being scammed. My own father purchased a truck and had it delivered while I was at work (he was not supposed to drive) AND sold his lakeside home for 100 thousand dollars less than market value before I could obtain conservatorship/guardianship for him.

My concerns about early diagnosis are twofold.

I’m worried that an early diagnosis will elicit prejudices against the indivual who was diagnosed. Will their employment be cut short even when they are still capable of making appropriate decisions? They will definitely be under the microscope by their employer (We might watch this play out in the case of Tennessee women’s basketball coach, Pat Summitt).

Also, what will happen to the insurance rates of the person with the early diagnosis? Insurance companies are acutely aware of the cost of Alzheimer’s care and I can’t imagine that (just like in the case of those diagnosed with HIV) they won’t find a way to raise the rates so much as to become unaffordable or disqualify them in some way.

My other concern is in regards to powers of attorney and conservatorship/guardianship. I believe that there needs to be something in between these two options.

Powers of Attorney are easily revoked (and probably will be revoked at the time they are needed the most). Conservatorships/Guardianships are difficult to obtain(although maybe not difficult ENOUGH) and literally remove any individual decision-making rights that the diagnosed person once had.

Unfortunately there’s no perfect answer.

There is no cure and really no effective treatment, but we must continue to advocate for the vision of a world without Alzheimer’s Disease.

Thank you so much, Sonia, for sharing your story.

Shelley

]]> By: Sonia http://takingcareofthefolks.com/alzheimers-awareness-why-bother/comment-page-1/#comment-1409 Sonia Wed, 12 Oct 2011 18:32:00 +0000 http://takingcareofthefolks.com/?p=733#comment-1409 The reason we want to promote awareness is to generate the funds necessary for research because we need effective treatment (if not a cure). I would argue that we need to encourage people to get diagnosed - not for purposes of treatment (since there is no effective treatment), but so that people can get their legal, financial and medical wishes in order. Unfortunately, this is not something that is mentioned enough or prioritized by doctors or advocacy organizations. No family wants to discuss these issues with their mother/father however it's absolutely necessary to avoid serious problems later. My mother was a victim to shady "charitable" organizations prior to her being diagnosed (and before we took away access to her banking). Alzheimer's left her at risk to making poor medical, and financial decisions. It's a terrible diagnosis, and my heart goes out to anyone who is diagnosed with this disease as well as their family members, who are also unacknowledged victims of the disease. Sonia, caring for mom with Alzheimer's 7 plus years. The reason we want to promote awareness is to generate the funds necessary for research because we need effective treatment (if not a cure). I would argue that we need to encourage people to get diagnosed – not for purposes of treatment (since there is no effective treatment), but so that people can get their legal, financial and medical wishes in order. Unfortunately, this is not something that is mentioned enough or prioritized by doctors or advocacy organizations. No family wants to discuss these issues with their mother/father however it’s absolutely necessary to avoid serious problems later. My mother was a victim to shady “charitable” organizations prior to her being diagnosed (and before we took away access to her banking). Alzheimer’s left her at risk to making poor medical, and financial decisions. It’s a terrible diagnosis, and my heart goes out to anyone who is diagnosed with this disease as well as their family members, who are also unacknowledged victims of the disease. Sonia, caring for mom with Alzheimer’s 7 plus years.

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