Eight years ago, Angela Taylor had never heard of Lewy body dementia (LBD), the second most common form of progressive dementia after Alzheimer’s disease. So how did this stay-at-home mother of two preschoolers become a nationally-recognized advocate for LBD research? All it took was for the disease to strike close to home.
What is Lewy Body Dementia?
Lewy body dementia (LBD) is a degenerative brain disease that progressively impairs thinking and movement, while impacting behavior and sleep. Although it affects an estimated 1,300,000 people in the U.S., LBD is most often misdiagnosed as Alzheimer’s or Parkinson’s disease.
Engineer Bruce and his daughter Angela’s journey
Angela’s father, Bruce, began displaying subtle cognitive problems in his early sixties. An engineer by profession, Bruce was losing his mechanical and computer skills. In 2003, a neurologist called it “mild cognitive impairment” and ruled out Alzheimer’s disease; and a casual mention of Bruce’s nightly experience of frightening nightmares also led to a diagnosis of REM sleep behavior disorder (or RBD), which causes a person to physically act out their dreams. Leaving the doctor’s office that day Angela and Bruce celebrated, thinking they had dodged a bullet named Alzheimer’s. Little did they know, another frightening degenerative brain disease had Bruce in its sights.
Receiving no additional information about Bruce’s conditions, Angela turned to the Internet for answers. Scientists were associating RBD with a progressive condition called Lewy body dementia, which also caused Parkinson’s-like symptoms, vivid hallucinations, fluctuations in cognitive abilities and alertness, as well as severe medication sensitivities. Bruce didn’t have those other symptoms, but began having problems managing his medications and checkbook.
Quick facts about LBD
“Early and accurate diagnosis of LBD is of critical importance,” states Dr. James B. Leverenz, professor of Neurology at University of Washington and chair of the Lewy Body Dementia Association’s Scientific Advisory Council. “People with LBD respond more poorly to certain medications for behavior and movement symptoms than people with Alzheimer’s or Parkinson’s, sometimes with serious side effects.”
Bruce’s confusion kept getting worse, leading to several crisis situations and difficult family discussions. Eventually, Bruce reluctantly agreed he could no longer safely live alone; he sold his home of thirty years and moved in with Angela and her family. Suddenly she was caring not just for her children, but also for her father, and the sudden role reversal was devastating to both Angela and her father. The close living situation revealed something new as well; Bruce’s confusion waxed and waned unpredictably, ranging from sometimes having nearly normal abilities to think and reason to having obviously impaired cognitive skills.
Within a year Bruce was diagnosed with Lewy body dementia (LBD). Not wanting to be a burden to his family, he decided to move into an assisted living residence. Then he gave up driving when the doctor advised it was no longer safe. Piece by piece, the fruits of his lifetime of hard work were stripped away by LBD’s relentless progression. Home, hobbies, travel and social activities, all gone.
Meanwhile, Angela connected online with other LBD families, whose collective stories painted an unbelievable picture: despite its prevalence as a common form of dementia, most doctors (including many neurologists) didn’t know about LBD. So in 2004 she started volunteering for the Lewy Body Dementia Association (LBDA), a small, new, disease advocacy organization launched by LBD family caregivers.
“I called myself an accidental advocate,” said Taylor. “Like all LBD caregivers, I found myself having to educate every single person I knew about LBD, including many of my father’s doctors. And I learned quickly to stand up on his behalf to request aggressive medical care, in order to maintain an optimal quality of life for Dad. That became my primary job as his daughter and caregiver, and it lasted for eight long years.”
Bruce died from Lewy body dementia this past March. And in the years since the disease first entered her life, Angela found purpose in her father’s illness through the Lewy Body Dementia Association’s mission. “I don’t know how I would have made it through the whole ordeal without LBDA, from the clinical information I received on the disease itself to the support of the LBD families I met along the way,” said Taylor, who later served on LBDA’s Board of Directors, including two terms as its president. “Nobody should have to face LBD alone. Families affected by LBD can find help AND make a truly significant impact by joining with the Lewy Body Dementia Association to bring national attention to Lewy body dementia.”
LBDA has launched A Month To Remember, a national grassroots campaign to raise awareness of Lewy body dementia. LBDA designated October 2011 as LBD Awareness Month and is mobilizing families and organizations across the country. Volunteers are encouraged to organize educational events, deliver LBDA materials to community-based physicians, share their personal stories with the media, and hold fundraisers to benefit LBDA.
The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, the United Kingdom, and Japan in research and clinical management of Lewy body dementias.