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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See Me in Dementia

by Laura Bowley, Director at Mindset Centre for Living with Dementia With Warm Appreciation to Laura Bowley for permitting us to re-post this April 6, 2016 article at a time when WE TRULY NEED TO SEE THE PERSON: (original post link: http://mindsetmemory.com/see-me/) What happens when you don’t see the “me” in dementia? If you don’t see the “me,” you see the dementia instead, and when you see the dementia, the “me” or the “I” becomes an “it.” You’re seeing a disease rather than a person. If you don’t see the “me,” you get physicians who speak to the caregiver when revealing…

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You Had Me at Dementia: Empowering Those with Early Onset Disease

By Anthony Cirillo With our appreciation to GreatCall, Inc. for enabling us to re-post this article. You might remember the famous cinematic line, “You had me at hello,” the touching moment where we knew love was instant. My love was also instant for several friends who “had me at dementia.” As an executive board member of the Dementia Action Alliance (DAA), I am proud to serve with several people who have early onset Alzheimer’s disease. One of the things we advocate for is that people in early stages still have much to offer and we can help them lead a quality…

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Book Reviews: Wonderful New Books on Living Proactively with Dementia

By Karen Love Every once in a while a book comes along that is a stand out. Luckily, two such books about living proactively with dementia have recently been published. Kate Swaffer’s, “What the Hell Happened to My Brain? Living Beyond Dementia,” is a tour de force and a candid account of one person’s journey living proactively beyond a dementia diagnosis. As the title suggests, Kate, who was diagnosed with a younger onset dementia at the age of 49, is spunky and describes her “good, bad and downright ugly” experiences. Her first person perspective is an eye-opening yet heart-warming story.…

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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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A Relationship that Weathered Lewy Body Dementia: Robin Williams and Susan Schneider Williams

By Juliet Holt Klinger October 4, 2016 The DAA thanks our Partner Juliet Holt Klinger and Brookdale for allowing us to re-post this blog. One of the most compelling accounts of sustaining a relationship with a loved one with dementia has just come from Susan Schneider Williams, wife of the late comedian Robin Williams. In her open letter to the American Academy of Neurology in its journal Neurology, Schneider Williams takes the reader – and hopefully many neurologists – through a detailed account of the period before her husband’s death. She tells the story of Robin Williams’ journey with what she describes…

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Did you Know…

For Those Among Us Who Are Journalism-Challenged By Karen Love I recently met Jay Newton-Small for breakfast. Jay is an engaging journalist who has been writing for TIME Magazine and Bloomberg News for over 15 years. Her experience with her father’s dementia led Jay and another journalism colleague to launch a company, MemoryWell, to help other families capture personal stories, pictures, music and videos of loved ones. I asked Jay if she had considered writing an article about people LIVING with dementia from first person perspectives and not the stereotypical approach from others’ perspectives about the impairments and losses. She…

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Recognizing the Importance of Advocating for those with Alzheimer’s and Dementia

From the Congressional Record of September 21, 2016: HON. MICHAEL G. FITZPATRICK of Pennsylvania in the House of Representatives Wednesday, September 21, 2016 Mr. FITZPATRICK. Mr. Speaker, I include in the Record the following letter by Michael Ellenbogen. I am so thankful to be still here. Many of my friends who were living with dementia have died and others are no longer capable of speaking. I am one of the lucky ones. My Alzheimer’s is progressing very slowly. While that is good news it is also bad news. I will be forced to endure the worst part of this disease even…

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Finding a balance between risk and an enjoyable life for someone with dementia

By Unforgettable.org The DAA thanks our Partner Unforgettable.org for allowing us to re-post this blog. You want to keep your loved one with dementia safe, but you also want them to enjoy life as much as possible. So how do you get the balance right? Find out what you need to know about Positive Risk Taking Could this be you? You know you can’t wrap them in cotton wool and that the person you’re caring for needs to make the most of each and every day, but: • They’re vulnerable and you need to protect them. • It would be…

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