September 27, 2024

Together, We Can Increase Understanding of Lewy Body Dementia

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Brookdale Senior Living offers multiple care levels for seniors in more than 600 communities nationwide. Brookdale helps you find the right care plan for yourself or your loved one. With amenities such as transportation services, salons and private dining rooms and activities such as gardening, fitness classes and trivia nights Brookdale caters to a wide range of interests and needs.

Lewy body dementia (LBD) can cause confusion not only for the people living with it but also for the people who care for them — including healthcare professionals. Well over a century after the identification of the abnormal protein deposits that cause LBD, the scientific and medical communities are still learning about this progressive brain disorder and its unique challenges.

October is Lewy Body Dementia Awareness Month, and Brookdale Senior Living is committed to helping increase understanding of LBD. According to the Lewy Body Dementia Association (LBDA), this disease affects an estimated 1.4 million Americans and is the second-most common form of degenerative dementia after Alzheimer’s, yet it is difficult to diagnose with certainty.

By expanding their knowledge of LBD, healthcare professionals can help their patients, caregivers and families learn ways to better manage the disease. Senior living communities that care for individuals with dementia must also be proactive in their efforts to help that those living with LBD receive the treatment and support they need.

Cognition, Behavior and Movement

LBD, a neurodegenerative disorder found mostly in people age 50 and older, grows more severe over time as it progressively impairs an individual’s cognition, behavior and movement. There are two main forms of LBD: dementia with Lewy bodies and Parkinson’s disease dementia. Both disrupt normal brain function.

Lewy bodies, abnormal deposits of the protein alpha-synuclein in the brain, take their name from German neurologist Frederic Lewy, who identified them in 1912. While alpha-synuclein fulfills an important role in a healthy brain — facilitating communication among brain cells — it hinders functions in a brain with LBD. It forms clumps inside neurons, reducing their effectiveness and ultimately killing them. According to the National Institute of Neurological Disorders and Stroke (NINDS), these Lewy bodies can affect various parts of the brain: the cerebral and limbic cortexes, the hippocampus, the midbrain and basal ganglia, the brain stem, and the olfactory pathways.

The National Institute on Aging has identified a wide range of LBD symptoms:

Cognitive symptoms may include changes in one’s ability to think and reason, especially when complex or multistep processes are involved; difficulty communicating, understanding numbers, and grasping concepts of time and space; unpredictable shifts in alertness, concentration and wakefulness; visual hallucinations; and delusions.

Behavioral symptoms may include depression, anxiety, apathy, lack of interest in social interaction, agitation or restlessness, delusions and paranoia.

Movement-related symptoms may include rigid or stiff muscles, a shuffling or slow walk, a frozen stance, tremors or shaking, slumping posture, loss of coordination, smaller handwriting than before, a reduced range of facial expression, difficulty swallowing and a weakened voice.

Sleep disorders are also common.

At this point in time, there is no cure for LBD. Individuals can live from two to twenty years after an LBD diagnosis, NINDS says; the disease lasts an average of five to seven years.

The Importance of Early Diagnosis

The first case studies of Lewy body dementia were published in the mid-1960s, but the diagnosis remained largely unknown until 1996, when a group of physicians and scientists developed a consensus report on LBD diagnosis, according to the Goizueta Alzheimer’s Disease Research Center at Emory University. The diagnostic criteria were refined in 2007.

The disease gained increased attention after the 2014 suicide of Robin Williams. An autopsy revealed that the beloved actor and comedian had been suffering from “diffuse Lewy body dementia.” His widow, Susan Schneider Williams, described the fear, paranoia and hallucinations brought on by LBD, which she called “the terrorist inside my husband’s brain.”

Sometimes it may take years for a physician to make a LBD diagnosis. Reasons why the disease so often goes undiagnosed[MOU1] include:

Early symptoms often are confused with those of Alzheimer’s disease and other diseases of the brain, and people with LBD exhibit symptoms of both Alzheimer’s and Parkinson’s.
Early symptoms can be mild.
LBD sometimes coincides with other brain disorders. Some people, for example, have mixed dementia, consisting of LBD along with Alzheimer’s and/or vascular dementia.

Early diagnosis of LBD may help the affected person receive the appropriate medical care while avoiding treatments that might be harmful or counterproductive, make informed healthcare decisions, make financial and legal arrangements, and consider participating in clinical research on LBD.

Meanwhile, much remains unknown. Scientists consider age the most significant risk factor. The presence or lack of other diseases or health conditions, genetics and general lifestyle also can influence one’s risk of developing LBD, though there is little conclusive quantitative research.

Senior Living Communities and Dementia Care

While there is currently no cure for LBD, there are ways to help treat and manage it, and individuals can learn to live meaningful lives with it. In a Brookdale Senior Living blog post on October 2017, Robert Bowles, 15 months after his LBD diagnosis, offered four tips for living well with the disease. Mr. Bowles, who died in December 2022, described the importance of acceptance, socialization, attitude and purpose.

Because senior living communities play a central role in their residents’ day-to-day lives, they are uniquely positioned to help educate residents and those involved in their care decisions — family, friends, and care partners — and to communicate any changes in a resident’s behavior or mood to others who need to know. They also can provide the acceptance and socialization opportunities that residents may need to help thrive.

As dementia progresses, communication among the senior living community, physicians, caregivers and family members becomes increasingly important. This communication may need to include ongoing education about the disease, its progress, the resident’s response and what to expect over the short and long terms. Information on the disease and expert guidance can help support families when making care decisions. Educational material on LBD is available from several resources, including the Lewy Body Dementia Association, the National Institutes of Health, the National Institute of Neurological Disorders and Stroke, and the National Institute on Aging.

At Brookdale Senior Living, multidisciplinary teams help support those living with dementia, playing key roles in helping to reduce symptom severity and improve quality of life.

Learn More

Are you a healthcare professional interested in learning why Brookdale Senior Living is a smart choice for your patients? Our personalized care, including for residents with Lewy body dementia, is designed to help residents stay healthier longer and live meaningful lives. Let’s work together.

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