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Get involved in Alzheimer research
Sunday, July 27, 2014
I was recently invited to be a subject in research for treatment of pre-symptomatic dementia of the Alzheimer's type. I read over the requirements of time (one day a month for 3 years), what to expect from each visit (memory testing, MRIs, PET scans) and eventually, if I was qualified to be a candidate (had evidence of beta amyloid protein in my brain) I would receive an infusion once a month. I would not know if it were the medication or a control solution (probably normal saline or dextrose I guess). I thought long and hard about the commitment and the possible side effects (I could see few from the literature provided me) and decided I wanted to be involved.
Why do you ask? This was the question I was asked in a recent interview with Dr. Bob Stern of BUAD Research Center which was filmed for a local Boston TV show Chronicle. People who choose to be involved in research have to have reasons. Mine are: that I've had the personal experience of being a family member, albeit as a daughter in law of two parents having Alzheimer's and saw the impact it had on their lifestyle and the family's. The other of course is my 15 year history of serving dementia caregivers as a coach. Life is forever changed for the family after a diagnosis of Alzheimer's is given. Relationships change (sometimes for the better; sometimes not), responsibilities shift, and families need to find balance in caring for the person with the disease and finding satisfaction and meaning in their own life.
Ours was (and continues to be thankfully) a fairly intact blended family unit and in spite of that, we had differences on how to care well for my mother in law and father in law. My husband and I struggled with time constraints; that often our time together was sacrificed for  Betty's care and safety especially as she was quite resistant  to any hint of her needing anything. My father in law was welcoming of help as he had awareness of his needs. She didn't and was a woman who wanted things her own way throughout life, so that didn't change with the onset of Alzheimer's.
If Alzheimer's could be recognized 10-20 years before symptoms, I can only imagine the difference early treatment would make. The person could plan his or her life, abilities would be sustained much longer, and families could enjoy the person for who they know him to be much longer. So, this is why I am in my third research study with BUAD Research Center. I took part for 10 years in the Women's Health Initiative and felt good about participating. I am healthy and my career is winding down a bit giving me the luxury of doing other things...like being able to help research a drug that could slow down or stop the effects of Alzheimer's. It feels good. Give it some thought.
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"I was so frustrated all the time just trying to get him to shower. My coach made suggestions that always worked!"

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