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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Maureen’s journey: ‘We have a positive attitude – we’ll try anything once!’

The DAA thanks Maureen and Mike and Unforgettable.org for allowing us to re-post their story Maureen Pike’s husband Mike was diagnosed with Alzheimer’s and Posterior Cortical Atrophy (PCA) at the age of 59. Here Maureen explains how they’re both continuing to enjoy life. How was Mike diagnosed? It was quite a long process. Mike had always looked after himself and led a healthy, active lifestyle. The only time he’d ever been ill was as a teenager when he had an eye condition (his eye turned in) and needed an operation to correct it. Then in his early fifties he started…

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