One of the most exciting things we learned at the 2019 LBD Conference was that the LBDA has started a program called Research Centers of Excellence (RCOEs). We see this as a huge step towards providing care partners, their loved ones and their health care teams the service and information that Jim had in mind when he and four other LBD caregiver founded the LBDA in 2003.
When Jim and When Jim and I married two years later, the LBDA was still a totally volunteer organization, with headquarters in our home, a post office box in a college town a few miles away, a small website managed by Jim-- and so many boxes of brochures that they served as a base for the bed in our spare room.
Since then it has blossomed into a national organization with 14 full time staff in Atlanta GA, over a hundred support groups, a huge information-filled website and volunteers throughout the nation. It was then and is still dedicated to
- raising awareness of LBD
- advancing the diagnosis of LBD
- promoting scientific advances
- supporting people with LBD, their families and caregivers
The LBDA's present mission statement reflects all of that: "Through outreach, education and research, we support those afflicted by Lewy body dementias."
However, some not fully resolved issues are still present. One that we hear care partners ask about regularly is "How do we find a Lewy-savvy doctor?" The answer to that isn't always easy: "Ask other members in your support group." has been one of the best, but if you don't have a support group, then what?
Another issue is the need for more research. Although the government has alloted much more money to research for dementias besides Alzheimer's, too many clinical trials fail, not because they didn't pan out, because not enough subjects are willing to volunteer.
A third issues remains the need for better and more information. We still hear many care partners who struggle to learn more about this baffling disease. Even when they find a Lewy-savvy doctor, they may not find the educational support they need, because doctors tend to focus on the disease rather than the patient or the family.
The LBDA's Research Centers of Excellence (RCOEs) address all of these issues. The people who established the RCOEs had two goals:
- establish a trial-ready network.
- increase access to high quality clinical care over the course of LBD.
As the RCOEs were developed, a third goal was added, thus meeting all three goals in LBDA's original mission statement:
- to offer caregiver and community support and education.
RCOEs address both the future, via their research module, and the present, via their clinical treatment module and their community support module. Promoting research, accurate diagnoses and supporting those living with LBD all take equal billing. It all works together.
While Alzheimer's research has grown in recent years, funding for research for other dementias has only now begun to be available. This is very positive, but a major problem remains. Many clinical trials fail, not because the theory proved wrong, but because of a lack of subjects willing to volunteer. Now, with funds available for more LBD research, the need for willing subjects is greater than ever. By offering high quality--and knowledgeable--clinical care, RCOEs develop a pool of patients from which to draw subjects for these clinical trials.
The RCOEs answer the issue of finding not only a Lewy-savvy doctor, but a whole Lewy-savvy team. You can go to any of the 33 and growing RCOEs in the nation and expect to find Lewy-savvy doctors and staff. That's because to be an RCOE, a clinic must provide ongoing training for their professional staff to keep them up-to-date. There is also a RCOE goal to define standards of care for management throughout the course of the disorder. This means that you will likely get the same good care in any RCOE and that eventually, these standards will spread throughout the medical community.
As for caregiver and community support, The LBDA has done a great job sponsoring support groups and providing education. However, there are still gaps, still a need for more support and better information. To qualify for RCOE status, a clinic must sponsor a LBD caregiver support group and offer regular community education about LBD. If there is a RCOE in your area, you can count on finding a support group as well as classes to help you and others in your community learn more about how to deal with this often baffling disorder. Be sure to take advantage of these educational offerings.
Thus a RCOE offers Lewy-savvy doctors with ongoing training that can educate not only these doctors but all health care professionals in the community who are interested. It offers ongoing support for patients and their care partners. And finally, it is a source of education for the whole community. To find out if there is one close to you,
click here.
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.
