April 2018 Lewy Digest | Lewy Body Dementia Association LBDA

April 2018 Lewy Digest

Quote of the month:
“True compassion means not only feeling another's pain but also being moved to help relieve it.”- Daniel Goleman


Greetings Lewy Family,

Blooming this month on our road to our 15th anniversary is compassion. Compassion is a motivator. Compassion is the beating heart in all of us that feels for someone close to us or for those we share similar situations within the Lewy world. Our hope is that compassion can motivate people to go out of their way to help others. Compassion is selfless and ever-growing. The more compassion and kindness we contribute to the world, the happier we feel as a human. The essence of compassion is being involved in finding a cure for LBD, something you may not understand but standing until the answer is found.

How to Overcome Caregiver Self-Neglect

Here are a few ideas for the caregivers that may be experiencing difficulty balancing their commitment between caring for their loved ones and the selfish fulfillment of personal needs.  

Stop living only in the moment.  There are several great admonitions out there that tell people to "Be here now" and "Be happy for this moment. This moment is your life." But none of these really apply or work well when dealing with a string of big and small caregiving emergencies that cumulatively take their toll. For every pivot toward crisis, you need to take into account both what needs to be done and what consequences you may experience. Take a moment to ask yourself, "What will this cost me and can I sustain myself through the course of caregiving if I continually pay that cost over an extended period of time?" With a progressive health condition such as LBD, the answer is likely no.

Feel guilty -- but for not helping yourself. Many caregivers feel that the time they spend caring for their own wants and needs has left them feeling guilty because of the pain and suffering of their loved one. "They need me more now than ever." "It's not fair to them if I neglect the time they need me." It's true, your loved one does need you, but you also need you. As much as you want to give them comfort, you do yourself a disservice by rendering yourself unwell and thereby unable to fulfill your caregiving duties.

Link caregiving and self-care tasks. Rather than regarding caregiving and self-care as an either-or proposition, link them logistically. Use your daily schedule for caring for your loved one as a cue for prompting you to care for yourself. As an example, you can turn your errand running for your loved one into an errand running session for yourself. If your loved one has a doctor appointment, schedule yours with the same primary care provider so you don't double back. 

Work toward family wellness. A well-rounded family is cared for by a well-rounded caregiver. You wouldn't intentionally neglect to care for a loved one if it meant that another loved one would have to suffer. Caregiving is ultimately about caring for all loved ones. You are loved by the person you care for so neglecting yourself is the same as neglecting to care for a member of your family. Work on the whole family, not individuals. 

Source: AARP

Caregiver Spotlight

LBDA would like to shine our spotlight on Kathryn (Kate) Burke. Kate has displayed great levels of compassion after caring for her husband for 17 years. Kate, is a caregiver, author, and a presentational speaker. She has written a few books about her accounts as a caregiver to first a parent and then eventually her husband. Her stories cover a multitude of caregiving situations from illness to injury. Most recently Kate has agreed to form and facilitate the Western Colorado Lewy Body & Dementia Support Group with us here at the Lewy Body Dementia Association. Even now after his passing she has not given up on caring for the LBD community and has become a facilitator for our Western Colorado Lewy Body & Dementia Support group. We asked her to write her story. and have an excerpt for you, to read the rest of the article please read her story, Goodbye to My Steam Man, and the accompanying photographs in our LBD Stories section. 


Lewy Body Dementia (LBD) takes prisoners, and it does not discriminate. When LBD targets someone, there is no cure and no escape—it’s a one-way journey, with a guaranteed rough ride at the end. The only variables are how long it will take, and how long the caregiver can hold on.

My husband’s death certificate lists Lewy Body Dementia as a cause of death: three little words that represented a huge change in lifestyle and expectations for both of us. It was a longtime coming, and as the passing of increasingly difficult years, a growing challenge to recognize, accept, and finally, learn to live with. LBD is insidious. When death comes, for most, it is a blessing.

My husband was James Burke. We called him ‘Burke’ or the ‘Burkeman.’ He was a brilliant man: holding patents for his work in power-generation plant designs. He was a creative man: a writer and photographer chronicling the history of steam locomotives in America. He was an active man: chopping firewood for our woodstove, working in the plant before retirement (as a mechanical engineer), and after retirement, taking long daily walks (5 miles or more) in the woods and mountains where we lived for over 25 years. He was a traveling man: who loved to explore the American west, photographing and writing about it—he loved history and maps. He was a western man: born on a farm/ranch in Kansas, he always wore his boots and hat, and exemplified the manners and traditions of his early upbringing. He was a man of humor: he could keep us laughing with ‘Burkisms’ which expressed his unique outlook on life.

Source: Kathyrn Burke

Breaking News:

ATLANTA, April 3, 2018 -- The Lewy Body Dementia Association (LBDA), the leading advocacy group dedicated to raising awareness and advancing research about Lewy body dementia (LBD), announced today the launch of the LBDA Research Centers of Excellence (RCOE). This collaboration features 24 preeminent academic medical research centers across the United States, coordinated by Mayo Clinic.

The LBDA RCOE program will provide a centralized, coordinated research resource, supporting an expanded effort in conducting clinical trials related to LBD while helping to provide expert clinical care for patients, families, and caregivers.

The 24 RCOEs are spread across 17 states and the District of Columbia and are located in 23 American metropolitan areas. Each RCOE is led by recognized primary investigators (PIs) and co-investigators to conduct trials and provide expert care. A full listing of RCOE institutions is available here

Science and Research

Lewy bodies are misfolded clumps of a specific protein found in the brain’s nerve cells in people with Parkinson’s disease (PD), dementia with Lewy bodies (DLB) and multiple system atrophy (MSA). Lead author Rodolfo Savico, MD and colleagues at Mayo Clinic have proposed a new staging system to describe the progression of Lewy bodies, from the very earliest evidence of the disease in the brain to an advanced stage where the disease now causes concerning symptoms that result in a specific diagnosis.
Proposed staging of Lewy body disease:

  • Stage 1 – The earliest start of Lewy body formation begins at least 20 years prior to diagnostic symptoms; one or more early risk factors may be present, such as a loss of smell or chronic constipation. These symptoms are not specific enough to make a diagnosis on their own.
  • Stage 2 – The onset of the earliest warning symptoms of Lewy body disorders, specifically anxiety and REM sleep behavior disorder.
  • Stage 3 – The advanced stage of biological changes now results in diagnostic symptoms of Lewy body disorders, including parkinsonism, visual symptoms, psychiatric disorders, dementia, cognitive fluctuations.

A single, unifying staging system for both Parkinson’s disease and dementia with Lewy bodies is urgently needed to understand why some people develop Parkinson’s disease while others develop dementia with Lewy bodies. As these diseases can vary considerably from person to person, large studies that follow people from the earliest stage will also help define sub-types of each disorder.

This article first appeared in JAMA Neurology in February 2018. Co-author, Brad Boeve, MD, is a member of LBDA’s Scientific Advisory Council and primary investigator of the Coordinating Center for LBDA’s Research Centers of Excellence program. 

Upcoming Events

Early Diagnosis: The Road to better Therapies and LBD Care EventMay 4th, 2018, in Philadelphia, PA
Spring Concert Donation Drive: May 4th, 2018, Washington, IL
Swing 'Fore' Lewy: May 6th, 2018, O'Fallon, MO
Mommaz Amazing Race: May 12th, 2018, Newton, IL
MOAB Racing to Beat Lewy: June 12th, 2018, Various Locations
Neal Badger Memorial Golf Tournament: June 29, 2018, in Shortsville, NY

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