What’s the Controversy About Aduhelm?
“Behold the deluge,” begins the February 18, 2022 article on the ALZFORUM titled, “On Aduhelm, Medicare Agency Gets Pressure From all Sides”. CMS received 9,956 public comments during its open comment period ending February 10, 2022 to hear from the public about its draft (temporary) decision to approve coverage for Aduhelm for people with Alzheimer’s only if they were enrolled in approved clinical trials. Organizations such as the Alzheimer’s Association and UsAgainstAlzheimer’s, both strongly in support of making Biogen’s drug Aduhelm (also […]
It’s Important for CMS to Hear From You!
On January 11, 2022 CMS announced it would cover FDA-approved monoclonal antibody drugs, such as aducanumab, for individuals with Alzheimer’s on Medicare only if they were enrolled in a qualifying clinical trial. This has been a controversial decision. The Dementia Action Alliance: Feels the FDA erred in its accelerated approval of aducanumab, a drug that has not shown clinical benefit yet has shown serious adverse effects. Strongly supports CMS’s decision to limit access to aducanumab to people enrolled in […]
Calling for a New Normal
By: Karen Love, DAA Executive Director, and the DAA Advisory Board July marks the beginning of the Dementia Action Alliance’s (DAA) 25th anniversary celebration! As we look back over the past 25 years, we are proud of how much we have been able to accomplish and thankful for the many friendships made. We cannot celebrate DAA’s progress though without also acknowledging how little has changed in the lived experience for people with dementia and their care partners over the past […]
Jennifer Carson and Chuck McClatchey: Resolute Examples of Choosing Hope
Few individuals model the character and goals of the Dementia Action Alliance better than Dr. Jennifer Carson and Chuck McClatchey. Based in Nevada, these two invaluable members of the broader dementia community bring a shared commitment building inclusive community for people living with dementia and other advocates, often working under the umbrella of Dementia Friendly Nevada. Jennifer, having worked her entire career to grow, learn, and teach as a care partner, now leads the Dementia, Engagement, Education and Research (DEER) […]
Why do we call it Alzheimer’s disease and not Alzheimer’s Dementia? by Michael R Belleville
Why do we call it Alzheimer’s Disease and not Alzheimer’s Dementia? From what I see and read and have researched, Alzheimer’s is the only form of dementia that is called a disease other than Parkinson’s. Does calling it a disease make it stand out from other forms of dementia? I think it does. When someone hears you have Alzheimer’s disease or Parkinson’s Disease you are automatically associated as having a terminal illness. But tell someone you have Lewy Body Dementia […]
Should You Stop Working? Guidance for People Living with Early-Stage Dementia by Marie Marley
Note: This article is directed toward people living with early-stage dementia. If you are a care partner, please pass it along to your loved one after you read it. Jeff Borghoff had been working as a Sr. Technical Architect for eight years. His job included, among other duties, meeting with clients. When he was 50 years old, he began to notice memory and concentration changes in himself. Jeff’s symptoms continued worsening, and by age 51 he was no longer […]
Do People With Dementia Have the Right to Vote?
Mary L. Radnofsky, Ph.D. I was recently asked about the voting rights of people with dementia in America, especially when entering memory care. It’s an important issue to those of us with a diagnosis. But this question also addresses our fundamental identity as human beings, for we have a voice that should be heard not only in the governance of our country, but in our personal autonomy. The right to vote is protected by the US Constitution for American citizens. […]
What Happens When We See Dementia as a Disability?
DAA thanks Kirsten Jacobs, associate director of dementia and wellness at LeadingAge, for allowing us to re-post her July 14, 2017 article, in which she imagines how our attitudes and actions might change if we looked at dementia as a disability, not an illness. Pam Montana and Chris Hannafan recently invited me to view dementia through an intriguing lens. In early June, the two appeared on my television screen during an installment of the PBS “Brief but Spectacular” series, which periodically asks interesting […]
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 […]
See Me in Dementia
By Laura Bowley, Founder, Mindset Center for Living with Dementia Originally published on Apr 6, 2016 http://mindsetmemory.com/blog/ 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 the diagnosis, and not […]