Dennis’ Story

Dennis was diagnosed with Lewy body dementia (LBD) in June of 2020. His two daughters share responsibility in caring for their father. One daughter handles more of the day-to-day functions while the other seeks resources and connections through her profession as a social worker and therapist. 

In 2014, Dennis suffered a traumatic brain injury while overseas and had to have emergency surgery. For a while, the family thought that the issues Dennis was experiencing were a result of his injury. He started seeing a neurologist after his surgery. Some of the neurological issues he was experiencing include staring off into space in an almost comatose-like state and hallucinations. Once he notified the neurologist of his hallucinations, he was almost immediately given a diagnosis of probable LBD.  

Prior to his injury and the progression of his LBD, Dennis was a writer and journalist. He enjoyed traveling and covering stories. He still writes today, but Lewy has stolen his ability to travel. This has been especially hard on Dennis because journalism is his passion. Fortunately, he was able to connect with a journalist, Oliver, living with Lewy with whom he is able to share his interest. They were able to bond over their shared experiences and passions.  

Dennis sought further support and connection through the LBDA Facebook group, Lewy Body Dementia Association Living with Lewy. The online outlet functions as a support group for those who have LBD, and as a safe place to share stories, tips, and shoulders.  

LBDA had the opportunity to speak to his daughter, Ashley, and she shared some insights. She recommends that care partners take it one day at a time, and do not be afraid to ask for help.  

Ashley also recommends to those struggling with LBD symptoms but do not have a probable diagnosis to seek a second opinion. She believes that had she and her sister not had the relationship they did with their father’s neruologist, that Dennis might not have a diagnosis today. 

RESOURCES:

Lewy Body Dementia Association Living with Lewy – This Facebook group is intended only for those living with LBD to provide information and support. Membership is limited to those with Lewy body dementias.

Lewy Body Dementia Association Care Partners – This Facebook group is a place to provide support and guidance as well as share information and resources. Membership is limited to care partners of those living with Lewy body dementia.

Lewy Body Dementia Association Living Together with Lewy – This Facebook group is intended only for those in the early stages of LBD and their care partners.

Eldercare Locator – This is a nationwide directory assistance service helping older people and their caregivers locate local support and resources. It is funded by the U.S. Administration on Aging.

Additional Resources