At the 2019 LBD Conference we learned about several programs that foster better LBD research, care and education. Some have been around for a long time. Others we first heard about at the conference. The first four make it easier for you to find a Lewy-savvy doctor and other Lewy-specific services as well.
The Mayo Clinic has been a pioneer in LBD care and research. Several leaders in the field, such as Drs. Boeve, Ferman and Dickson practice there. Mayo has major campuses in Rochester, Minn.; Scottsdale/Phoenix, Ariz.; and Jacksonville, Fla. You can count on finding a Lewy-savvy specialist at any of these centers.
The Cleveland Clinic is another group that's been around for a while, with two main centers in the US and others in foreign countries. Dr. Leverenz, past chair of the LBDA Scientific Advisory Committee, practices in their Cleveland location. The Cleveland Clinic partnered with the LBDA to sponsor the 2019 International LBD Conference in Las Vegas, where their other main campus is located.
One of the most exciting things we learned about in the whole conference was how many LBDA Research Centers of Excellence (RCOE) there are now. Launched in late 2017, this exciting program has centers in 17 states and 23 metro areas. One of the RCOE's goals is to increase access to high quality LBD clinical care. An RCOE medical center will have physicians specializing in LBD on staff, sponsor LBD caregiver support groups and provide LBD-related educational training for staff, patients and their families and to the general public. These centers are going to make it a lot easier for families to find and receive good Lewy-savvy care! Check here for RCOEs your area.
NIH sponsored Alzheimer's Disease Research Centers (ADRC) have been in effect for many years. Once focused on Alzheimer's, they now also address "related dementias." Thirty-three ADRCs centers provide informed research, treatment, support and education for people living with dementia and their families. These centers are less likely to have a LBD specialist on staff than the RCOEs, but are definitely worth checking out. Check here for ADRC center in your area.
The NIH (National Institute of Health) sponsored Alzheimer's Disease and Related Dementias (ADRD) Summit takes place every three years to review, assess and update national research priorities for Lewy body and other dementias and make recommendations for further research. In its March 2019, members made recommendations highlighting biomarkers development and use, research on alpha‐synuclein, protein spreading, genetic and environmental risk factors. NIH investment in LBD research has doubled since 2014, in part due to the additional funding made available by Congress to address the growing concern about AD/ADRD.
This list wouldn't be complete with adding some information about the 2019 International Lewy Body Dementia Conference. This is the first international conference since the original one in Fort Lauderdale in 2015. With specialists from around the world, celebrity family members, excited care partners and articulate patients and much more, it was filled with enough information to fill this blog for the next year!
There were also a couple of UK programs worthy of mention. One was the Diamond Study, which offers an "Assessment Toolkit for Dementia with Lewy Bodies." This checklist is designed to help clinicians more accurately diagnose PDD and DLB, using the 2017 DLB diagnostic criteria. Since multiple diagnoses prior to an accurate LBD diagnosis is a prime care partner complaint, anything that can improve the process is quite welcome! You can read more about this and see the checklist here.
The other UK program is called "Imagine." This program, sponsored nationally and by the Lewy Body Society, used care partner interviews to "imagine" their perceived needs and concerns for guidance in shaping future research. Hallucination, incontinence and sleep issues were the most challenging symptoms. "Meeting the demands of being a caregiver" was important but not usually a major challenge. Concerning future research, the group recommended more clinical trials about treating these more challenging symptoms, instead or in addition to those that focus on curing DLB or treating its cognitive symptoms. Their findings are in line with our experiences, which are that care partners want to know more about dealing with day to day issues although they don't discount the value of more scientific research.
Finally, we haven't even mentioned the LBDA or the UK's Lewy Body Society or our own Lewy Body Dementia Association. We'll save these for another day, along with a new US group and a few other foreign groups that have been around for a while.
BTW, we were going to go on a summer schedule of every two weeks, but we have so much conference material to share that that isn't going to happen after all!
For more 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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
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.
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