ATLANTA (MAY 5, 2014)—Today, the Lewy Body Dementia Association (LBDA) announces, as an extension of its Lewy Who? awareness campaign, a month-long salute to and continued support for Mom-Partner-Caregivers of family members with Lewy body dementia. Affecting more than 1.3 million Americans, Lewy body dementia (LBD) is the most misdiagnosed form of dementia and, following Alzheimer’s disease, is the second most common cause of progressive dementia. So, why recognize moms? Because LBD is slightly more common in men than women, compared to Alzheimer’s disease, which is more common in women than men. And, typically, the spouse or an adult daughter becomes the primary caregiver—a survey of LBD caregivers by LBDA revealed that 88 percent of respondents were women.
Following a diagnosis, these women—lifelong partners and daughters, often moms—face a seismic shift in lifestyle when caring for family members with LBD. Caregiving spouses face an increased risk of caregiver burnout because of the 24/7 nature of LBD caregiving, especially as they are typically older adults themselves with their own health issues. Adult daughters raising their own families unexpectedly become part of the ‘sandwich generation’ balancing dual caregiving roles for both for children and ailing parents. LBDA offers them a range of resources, information and support . . . support they insist is “priceless.”
One Heroine’s Story
“During the first five to 10 years of Nelson’s disease, I was in so much emotional pain, I couldn’t laugh or even comprehend other people’s laughter,” explains Ginnie Horst Burkholder, caregiver for her husband, Nelson, and mother of two children, Eric and Amy. “The bottom had fallen out of my safe secure world, and I was in free fall.” Through LBDA, Ginnie received the support she needed. She helps others by eloquently sharing her story—her sorrows, her joys, her challenges and her solutions.
“I wanted him to be the old Nelson, not the person he was becoming after years of creeping dementia,” Ginnie says. “I grew up in an era where single women were spoken of disparagingly; they were old maids! Women were expected to get married and start a family. So, I adopted a belief that I couldn’t be complete or whole without a man beside me. Nelson frequented the space beside me less and less over the past 20 years. So, I was forced to see myself as an individual . . . to take stock of my value without him.”
Ginnie explains, “Letting go of the past—who ‘we’ were, what I could no longer have in this relationship—has helped me to find my own value. As I grow in knowing that value, I experience ‘us’ in a new way.” She explains, “We are changed without apology. With this newfound knowledge, with attention to our different needs and wants and with few expectations, I’m living with a better version of me that affords us a better opportunity to re-encounter the ‘us’ of today.”
To hear more about Ginnie’s experiences or those of others like her, log onto www.lbda.org/lewywho and click “Find Patient and Caregiver Services” in the lower right-hand corner of the page.
LBD: A Demanding Debilitating Disease
Ginnie’s story is not unique. Many Mom-Partner-Caregivers struggle with similar concerns. Dr. Howard I. Hurtig, M.D., Chair, Department of Neurology, Pennsylvania Hospital, and Elliott Professor of Neurology at the University of Pennsylvania, says, “Individuals with dementia have an ever increasing need for health care resources as the disease progresses. Caring for LBD is especially resource intense (and may be greater than in Alzheimer’s disease) because of the challenge to the provider and caregiver of treating problems created by the combination of cognitive impairment and parkinsonism, which occurs in most patients with LBD.” According to LBDA, caregivers report medium to high levels of emotional stress associated with the care of loved ones with LBD.
This month, LBDA honors all mothers, especially caregivers of family members with LBD. With resources and support, LBDA remains ready to serve them.
A debilitating disease, Lewy body dementia impairs thinking, movement, sleep and behavior (causing people to see hallucinations or act out dreams, sometimes violently). Also, it affects autonomic body functions, such as blood pressure control, temperature regulation, and digestion. Recognizing symptoms early can help a person with LBD get comprehensive and appropriate treatment and the caregiver get much needed support.
Support for Healthcare Providers and Families
Education about LBD is urgently needed. The Lewy Body Dementia Association offers healthcare providers, individuals with LBD and caregivers a range of information, resources and support. Both experts and concerned families can download a Checklist of Lewy Body Dementia Diagnostic Symptoms to facilitate their discussion. To receive a packet of information or to access other resources about LBD, visit http://www.lbda.org/lewywho/.
About Lewy Body Dementia Association
The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), promoting scientific advances, and supporting people with LBD, their families and caregivers. LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.” It dramatically affects not only the person diagnosed but also the primary caregiver. A national health organization, LBDA supports all those affected by Lewy body dementias through outreach, education and research. To learn more about LBD and LBDA, please visit lbda.org.
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