Yesterday we attended the annual Arizona Alzheimer's Consortium Conference. We started out on a rather negative note. We left in plenty of time to enjoy the advertised pre-session Continental breakfast. But, long story short, we went to the wrong place MILES away from the right one! By the time we finally arrived, the speaker had already started. At our age, such incidents always end with us asking ourselves, "Is this a sign of impending dementia?"
But on to serious stuff. This is a conference directed at scientists, which we definitely are not. It is also strongly focused on Alzheimers rather than LBD. Nevertheless, we always come away from this conference in a hopeful frame of mind. This wonderful group of nine Arizona institutions collaborate to do research that a single one would find difficult if not impossible, reaching out to other institutions in the country and the world as well. Every year, they have a special focus for their conference. Several years ago, it was actually Lewy body dementia and other less common dementias. Another year, it was caregivers. This year it was students. Most of the presenters this year were students and they were great.
Of course, much of what we heard went over our heads. But we did learn that there are some amazing minds out there working on learning how to identify Alzheimer's early on. That's exciting because what they learn about AD will be translated to others like LBD very quickly. Here are some highlights of the conference:
Precursors: Several presenters talked about trying to discover what the precursors of Alzheimers. They weren't looking at external things like toxins, but on changes in the molecules themselves and what they do to other proteins that turns them into the plaques and tangles of AD. What seems to drive the changes? How common are they? Which changed molecules are present in people known to be at risk for AD and which ones aren't? And so on. The idea is that if they can discover these precursors, then they can find a way to stop them. Further, r researchers can use the methods they develop to look for precursors of LBD and PD and other neurogenic diseases in the same way.
Drugs. Most of us are aware of the damage anticholinergics can cause for anyone with LBD or even at risk for LBD. There's also a lot of the research that shows that the elderly who use these drugs are at greater risk than those who don't. A young researcher (a high school student!!) reported on his findings that middle aged people (40-50 year-olds) who used anticholinergics are at low risk for dementia. This was a primary finding and needs a lot more research, but quite interesting! Another researcher reported on findings that antidepressants like Prozac are fairly safe to use with dementia and in fact, may retard the development of AD.
Clinical trials. One of the roadblocks to research is the need for participants. Naturally they need people with the disease but they need healthy folks too, for their controls. We'd recommend that everyone who can should sign up for the Alzheimer's Prevention Registry. We also learned about the GeneMatch program that they have to help researchers working at the gene level. If you are 55-75 years old, live in the US and don't have a diagnosis of cognitive impairment, you are eligible to sign up for this too.
Caregiver care. Finally, we talked to a group called H.O.P.E. for building Health, Optimism, Purpose and Endurance in family caregivers and people with dementia. We were so pleased to see such a caregiver-oriented program represented at this conference. Their focus for the conference was anticipatory grief...which anyone dealing with LBD knows about...or should. They recommended the book, Loving Someone Who Has Dementia by Pauline Boss. "It's the book every dementia caregiver needs to have. It helps you deal constructively with that ambiguous loss that happens as your loved one gradually disappears in mind but is still there in body." Yes! We agree. It's a book you need in your library.
Oh, and we did get something to eat besides the muffins that we stealthy nibbled on while listening to the first speaker. They had a great lunch buffet with lots of healthy food and some decadent little desserts. Interestingly enough, they also had sodas. Have you heard about the latest research that people who have just one carbonated diet soda a day are three (3!!) times more at risk for dementia? And there's more research showing that drinking sugary sodas is linked to dementia too. Scary, huh? (More about this later.)
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LBD: Lewy body dementia
PD: Parkinson's disease
PlwD: person living with dementia
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
PlwD, PD, LBD, PDD, etc: person/people living with dementia
PlwPD, LBD, PDD, etc.: person/people living with PD, LBD, PDD, etc.
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.