Embracing Person-Centered Dementia Values: The Dementia Action Alliance

By Deborah Shouse, writer, speaker, editor, and dementia advocate. One by one, we say hello via video conferencing, writers, artists, and arts advocates from all over the country. One sculptor enriches the visual aspects of our meeting by strolling through a museum, giving us occasional glimpses of vibrant art. We meet another artist’s dog. Via video, we see each other’s offices and learn each other’s names and goals. Some of the participants are living with dementia; some are not. All of us are brainstorming ways to use the arts as a catalyst to connect people. Already it is working; through…

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The Beginning of Hope: Chapter 2

With our sincerest appreciation to Brian for allowing DAA to re-post his blog entry. www.withalzmyheart.com/hope By: Brian Kursonis March 5, 2017 When I realized I was no longer going back to my job and that I was now retired due to my ‘disability’… I suddenly had a bunch of time on my hands.  I didn’t want to be bored to death and become more of a couch potato than I already had.  This was due to the vertigo I had for two months at the beginning of this odyssey. So at first I decided to spend time doing things I…

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Dear Teenager – This is How Dementia Feels

The DAA thanks our friend Laurie Scherrer for allowing us to re-post this from her Dementia Daze blog   Dear Teenager, To answer your questions, “What does dementia feel like – does it hurt?” I want you to think back on some of the places we went. When we went to the fun house with all the mirrors everything was funny looking and out of proportion. Although we could tell it was us, it just didn’t look right. At the big corn maze, we got all turned around and every path looked the same.   At first it was fun, but…

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DEMENTIA: There is Hope

by Robert Bowles, Jr., DAA Leadership Board Reprinted from http://lbdlivingbeyonddiagnosis.com/my-blog/lessons-to-learn-with-dementia Sometimes doom and gloom are preached about dementia.  Often I hear people say there is no hope after their diagnosis of dementia.  That is likely a fairly normal response.  Our world has been turned upside down.  Do we stay in that mindset or do we seek to LIVE LIFE TO THE FULLEST.  My decision was to follow a process of learning and finding purpose after my diagnosis of Lewy body disease (DLB). My thoughts turned toward the fact that everyone will die one day.  Did I want to die at…

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The Angry Side of Alzheimer’s

Thanks to Brian LeBlanc, DAA Leadership Board member, for sharing this. (originally posted 1/19/2016 on http://abitofbriansbrilliance.com/) One of the things that makes me angry about having Alzheimer’s Disease are people that DO NOT WANT TO UNDERSTAND that I, and people like me, still know what’s going on around them and can still carry on an intelligent conversation. Sure, the words may not flow as evenly and smoothly as they did before, the mind may not allow us to remember the conversation an hour or a day or a week from now, but we still enjoy being in the moment.

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Honoring A Dear Friend & Invaluable Role Model

“Every man is worth just as much as the value of the things he’s set his heart upon.” Marcus Aurelius Alexander “Sandy” Halperin, DDS,  retired dentist, author, entrepreneur, public servant, and person living with dementia has, for the past three years, been featured in CNN segments presented by Dr. Sanjay Gupta. Sandy has chosen to not allow dementia to define him. Indeed, his love of life, family, and advocacy for others living with dementia, along with his positive outlook, determination, and wonderful spirit, have made him a blessing and invaluable role model to all who know him.  Sandy currently serves…

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Understanding Uncontrollable Crying or Laughing

by Sheila, a mother living with early-onset Alzheimer’s dementia After my father passed away in ’99, I went into a depression. Coincidentally, at about the same time, I started getting Alzheimer’s symptoms. My daughter, Dominique, says it was like I was going into a daze. In addition to my other symptoms, I found myself having these episodes where I would just start crying out of the blue and I would have to shut myself away where people couldn’t see me. I thought the crying outbursts were just part of the depression. But then I also started having episodes of uncontrollable…

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