Fall 2009, Issue 15


By ML, a Caregiver

One of the many difficulties associated with caregiving is that you will tend to disappear. You will become invisible. This may have already happened in your life as you cared for small children, but in that instance it was a joyous reward to oversee the development and nurturing of children that would go on to succeed.

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We're 63 -- and growing

LBDA's support group network now includes 63 support groups spanning 25 states plus the province of Ontario, Canada, up from only six groups in September 2006. Special thanks to all the support group facilitators who continue to provide an environment where Lewy body dementia family members and caregivers have the opportunity to meet and be supported by each other. For a complete list of Lewy body dementia support groups, visit our website.

Anyone interested in launching a support group in their community should contact LBDA's Support Group Coordinator. Please provide your telephone number so she may call you to discuss this great volunteer opportunity. Support group teleconference trainings are held about every two months for one hour in the evening for those interested in becoming a support group facilitator or for those people who already facilitate a support group and would like their group to become part of the LBDA support group network.

Answers to 40 caregiver questions available online

Are we getting any closer to confirming diagnosis prior to autopsy?
Nearly 400 caregivers listened in on a recent scientific webinar to hear the answer to that and other pressing questions regarding dementia with Lewy bodies. The webinar was hosted by the Alzheimer Research Forum and promoted by LBDA.

Before and after the event, Lewy body dementia caregivers submitted more than 100 questions to the panel, which included Dr. Ian McKeith, Dr. James Galvin, and Dr. James Leverenz, members of LBDA's Scientific Advisory Council. Due to the tremendous caregiver response, the Alzheimer's Research Forum turned to LBDA to provide answers to a broad assortment of caregiver questions. We are pleased to provide the first installment of answers to some of the most frequently asked caregiver questions.

LBD research funds available

The Lewy Body Dementia Association is proud to announce a new collaboration with the Alzheimer's Drug Discovery Foundation. LBDA and ADDF have invited scientists from the biotechnology industry and academia worldwide to apply for a new collaborative research grant award entitled Lewy Body Dementia Biomarker Research Award. The goal of the program is to encourage the discovery of innovative biomarkers that aid in early diagnosis, detection and disease monitoring of Lewy body dementias. The total pool of grant funds available for fiscal year 2009 is $100,000.

Click here to learn more about the award.

People making a difference: Board member Stephen Lamb

Stephen Lamb Stephen Lamb first approached the Lewy Body Dementia Association in search of support after his wife was diagnosed with LBD. His role quickly changed, as he became involved in the support group network and joined the board.

"It's something I'm glad I'm able to do." he says.

Steve serves as chair of the LBDA Board finance committee. In his professional life, Steve is president of Consultancy Resources Corp., a provider of business consulting services, and provides technical service support in metallurgical and corrosion areas. He has served as board chairman of Kyowva Goodwill Industries, responsible for a $4 million operation involving training disabled personnel and assisting them back into the workplace. He holds a B.Sc. in metallurgy and an M.B.A. in finance, and resides in Huntington, W. Va.

Caregiver's dilemma: Taking the car keys

By Amy and Gerald Throop

You must use common sense when deciding to take your loved one off the road. One suggestion for you to consider is the grandchild test.

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New Udall Center focuses on cognitive impairment in Parkinson's disease

The University of Washington is home to the 15th Udall Parkinson's Disease Center funded by the National Institute of Neurologic Disease and Stroke. The Pacific Northwest Udall Center (PANUC) of Excellence in Parkinson's Disease is a collaborative effort among physicians and scientists at the University of Washington and Oregon Health & Sciences University to investigate cognitive impairment and dementia in Parkinson's disease.

Core functions are highly patient-oriented with the goals of clinical service, improving diagnostic tools, and expanding opportunities to participate in clinical research. Three research projects span novel transgenic models, genetic risk factors, and patient studies of the bases of cognitive impairment in Parkinson's disease.

The center is under the direction of Thomas Montine, M.D., Ph.D., director of neuropatholgoy and professor of pathology at the University of Washington. Dr. Debby Tsuang and Dr. James Leverenz, members of LBDA's Scientific Advisory Council, are investigators in this new center. The $10 million project is slated to run for five years.

Quick Links to LBDA Resources:

You Can Help!

Just $10 a month, through automated monthly giving, can help promote LBD education, awareness and research.

Click here and become a Monthly Donor today!

Stephen Lamb


Planning an LBD-related event that's open to the general public? Email us at to help promote it on our Web site's Events Calendar!


Click here to visit our Articles page to read the following LBD-related news stories and more:

  • Skills tests may forestall dementia
  • Incidence of dementia expected to soar
  • MRI shows promise in diagnosing dementia

Learn About LBDA

Volunteer Corner

LBDA has numerous volunteer opportunities available -- please help us reduce the burden of Lewy body dementia for those with the disease and their loved ones. Contact Caite Schulz today.