Hoping you felt my good vibes being broadcast from my neighborhood coastal walk for Alzheimer’s Los Angeles*
*disclosure: I did cheat this, started at 0900 instead of 1000
Started October 3rd. Click here for page with regional links to a “marathon” of talks that I’m hoping were archived.
Besser et al. reported out findings of an Association for Frontotemporal Degenerations survey conducted in 2017. 698 caregivers participated, and I was glad to see that 56% of patient were able to obtain diagnoses of FTD within a year of first symptoms. Another 17% received their diagnoses within the next year of symptoms. Back in the early 2000s, it could take ~3 years for a patient to be appropriately referred to a neurologist for diagnosis. Delays had been related to misattributing the symptoms to mid-life crisis (poor judgment, uncharacteristic personality, depression or bipolar disorder). Those differential diagnoses still impact the process per the 2017 survey, and one of my interpretations of 2/3 of the diagnoses being made by neurologists is that we might need to better educate psychiatrists to consider FTD and corticobasal syndrome in their differential diagnosis when patients are older than 40 and manifesting symptoms that run so counter to their prior lives.
To see more of the details, click here
Excited to be part of Saturday, November 14th’s conference entitled “Wellness is an Inside Job: Healing the Mind & Body, Heart & Soul.” This will appropriately be a Virtual Conference organized by the University of Southern California’s Institute for Integrative Health & Wellness!
Click on the link above to find my speaker panel planned for 2pm US Pacific time. I’ll be joined by Reverend Brian O’Rourke and Dr. Yuri Jang of USC’s Roybal Institute on Aging. We’ll talk about remedies for social isolation when living with and caring for persons with dementia.
Note that there is a virtual music room (I’ll be playing with the La Jolla Taiko group for part of that!) and a very wide range of discussion topics to capture your interest and imagination. Registrants will be able to view sessions on a delay after the actual November 14th date, so don’t worry about not being able to take it all in at once!
Saturday, Oct 10, 10am US Pacific Time!
Although I left home long ago, I have kept in touch with the fantastic service providers in Los Angeles, who are doing so much for diverse populations around the city.
Please support my journey to help individuals and families facing Alzheimer’s! I am making a difference in the lives of over 166,000 individuals in Los Angeles county currently living with Alzheimer’s or another form of dementia. Each year approximately 1.6 million California caregivers provide 1.8 billion hours of unpaid care valued at $24.2 billion.
Please support me in my efforts to support Alzheimer’s Los Angeles as they provide free care and support to tens of thousands of local families living with Alzheimer’s or other dementia in multiple languages. Until there’s a cure, Alzheimer’s Los Angeles will provide the care.
Click here to donate or, better yet, click here to join the team and walk with us from wherever you are!
You may have seen trials in the past that have tested non-steroidal anti-inflammatory agents for Alzheimer’s disease. None of those trials showed positive efficacy, but the inflammatory system is still a target of interest. Researchers at Monash University in Australia through the ASPREE study group, checked out the possibility that aspirin might have an effect. They followed 19,114 participants living in the US and Australia for conversion to mild cognitive impairment or to Alzheimer’s disease and had to stop the trial early out of futility. The curves for the placebo and aspirin arms of the study almost perfectly overlapped!
Dhana et al. from Rush (see prior post re Rush’s Dr. Wilson’s work on early-life enrichment) reported in a late July issue of Neurology that their Chicago participants had lower risk of dementia due to Alzheimer’s disease if they were currently adhering to at least 2, and optimally 5 of the following:
Risk reduction ranged from 40-60%. Putting this into perspective: If you already were at low risk for Alzheimer’s disease, then your low risk gets lower but that may not be a significant difference. If you at a higher risk for AD due to unmodifiable factors, such as repetitive head traumas, recurring depression, crebrovascular disease, or family history, these modifiable risk factors may be worth paying attention to!
I know I haven’t mentioned Parkinson’s disease much – favoring frontotemporal dementia and Alzheimer’s disease on this blog– but I am inspired to share a new podcast out of Australia with you, featuring my friend’s brother, the dynamic and brilliant neuroscientist Dr. Dom Rowe as the expert commentator. He likens dopamine therapy for Parkinson’s disease to an oil that is necessary for your car’s engine to function right. The podcast is one creative product from a group called “It’s Not Funny.”
In their own words: “It’s Not Funny” is a community of people living with Parkinson’s Disease. Sharing their stories through photography, film and words. We inform the general public that Parkinson’s disease is not just an old person’s disease, more people in the prime of their lives are being diagnosed and then go into hiding uncertain and even fearful of how they will be perceive. We help them feel at ease with the disease with dignity and in a positive, light hearted way. You’re constantly hearing the bad news about Parkinson’s disease. We think it’s time to hear about the brighter side of living with the condition.
https://open.spotify.com/episode/2PnX9FmBrrint9trbG3Jmp?si=gzIjFWrxTeqYxJOL1NGLFw leads you to the 40 minute discussion. Listen carefully around minute 25 for Dr. Rowe to call out some of the PD mythology out there.
Along the same lines, JAMA Neurology recently ran a great review of what’s new in the image of PD by Armstrong and Okun. The good news is that a good number of patients have mild symptoms for a long time (B below). The better reporting is that there are more women and non-Caucasian populations involved than formerly stated. I really liked this graphic from that article:
The U.S. Congress is seen on Tuesday, April 23, 2019, Washington, D.C. (Photo by Aurora Samperio/NurPhoto via Getty Images)
There’s a quick link for you to pop messages to your congressmember here. The auto-generated message asks, “Please cosponsor and pass the Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act (H.R.6813/S.3703), which would require the Department of Justice to develop training materials to assist professionals who support victims of abuse living with Alzheimer’s and other dementia in order to improve the quality of their interactions with this vulnerable population, and help protect them from elder abuse,” but you CAN personalize the note!!
This is the dark side of dementia care and needs to be addressed.
In keeping with the prior post, the STAR study also looked at obesity in early adulthood and found correlations with late-life dementia risk:
This finding was echoed across races by research at Columbia University by Dr. Adina Zeki Al Hazzouri’s group, quantifying by body mass index (BMI). For the Cardiovascular Health Study (CHS) and Health, Aging and Body Composition study (Health ABC), early adulthood was extended to age 49.
