February 2013 Newsletter

Happy 10th Anniversary LBDA

Mike Koehler It will be 10 years this July since the incorporation of the LBDA as a 501(c)3 non-profit organization, which is committed to serving people with Lewy body dementia, their families and caregivers. As we begin this year, I think of our five founding members and the enormous task they undertook. I can only imagine how proud they must be of all that has been accomplished by those who have followed them in supporting our mission.

Through your help, we have expanded our reach in many directions, from establishing more than 80 support groups, to conducting the first LBD Biomarker Conference and awarding $300,000 in LBD research grants in collaboration with the Alzheimer’s Drug Discovery Foundation. From growing our earliest, fledging newsletters and website, to educating more than 6 million public service announcement viewers during our 2012 Awareness Movement; we continue to raise awareness, provide outreach, education and research for those affected by LBD.

As we begin a new year and a new decade, all of us at LBDA thank you for your support. Whether you share your stories, volunteer or donate, you help make a positive difference in the lives of those touched by LBD. You are the heart of our service and the soul of our mission.

Please consider a donation by clicking here to LBDA to help us to accomplish even more in the next 10 years!


Mike Koehler
LBDA Board of Directors

LBD Story: Finding Us

“I wanted him to be the old Nelson, not who he was becoming after years of creeping dementia. I wanted to resurrect the Nelson I once knew and preserve the relationship we had nurtured as it was — to keep the “us” we had created in those first twenty-five years of our marriage. I considered that “us” to be as good as it gets.”

An LBD spousal caregiver, Ginnie Horst Burkholder shares candidly about her coming-to-terms journey of marriage and LBD. Read her LBD essay "Finding Us".


Capgras Syndrome in DLB Associated with Anxiety and Hallucinations

Delusions, or false beliefs, are common in Lewy body dementias and can come in many forms. One fairly common delusion is a recurrent, temporary belief that a familiar person, often a close family member or caregiver, or location has been replaced by an identical imposter. This is called Capgras syndrome, which according to one study, affects approximately 17 percent of people with dementia with Lewy bodies (DLB). Recent research investigated whether there is an association with other DLB symptoms and Capgras syndrome. Learn more.

Dad’s Not All There Anymore by Alex Demetris, “Louie What?”

For the next few months, English graphic artist Alex Demetris is sharing part of his 28-page graphic novel "Dad’s Not All There Anymore" each month for February, March and April. It is based on Alex's family's experience of coping with his father’s LBD. Click below to see this month’s panel.  If you would like to know more about "Dad's Not All There Anymore," contact Alex through his web site. 

Louie What? by Alex Demetris

© Alex Demetris 2012

Tax Breaks for Dementia

Caring for someone with dementia can be physically and financially draining. But there may be some ways you can save on taxes. The cost of caring for someone with Alzheimer's disease, LBD or another chronic illness can be devastating. But you may be able to defray part of the expense by employing certain tax-saving strategies or write-offs. The tax breaks could go to the person with the medical condition or to a family member who assumes the financial burden of care. Learn more.

How to Fire Mom's Doctor, or Get a Second Opinion

Nearly all of us have at some time second-guessed a doctor's opinion, either regarding our own health or that of our elders.

Sometimes we do this out of personal knowledge, as was the case with an reader who is an RN, who questioned a medication for her mother's Alzheimer's disease. Read the whole story.