Take a look at your watch. Every 66 seconds someone is learning that they have dementia. Over 5 million people live with the condition in the USA. In this installment of the digital library you'll find stories of families and loved ones helping someone who has Lewy Body dementia. If you love someone or know someone challenged by that condition my hope is that this library will bring you comfort and assure you that, though your experience is unique, others recognize what you're going through and can understand.

About the library: Medicine lacks significant knowledge about dementia but there has been progress into learning the basic trajectory and identifying patterns of various subtypes. Where possible, I've categorized the library by each dementia subtype. Last month I published Frontotemporal Dementia links. This month Lewy Body links. I will also categorize by perspective ie: spouse caregiver, daughter/son caregiver etc. This dynamic digital library will spread over several blogs. This section, Lewy Body dementia (LBD) or sometimes (DLB), is the second in a series. It is by no means a complete library of everything online but it contains highlights of testimonials and stories that are well documented. Check back frequently for new entries.

About Lewy Body Dementia 

About Lewy Body dementia: Changes in mood and behavior, movement difficulties, and sleep disorders are standout symptoms of Lewy Body dementia. This form is unique among other types of dementias because of the presence of lewy bodies in the brain. "Lewy Bodies" are clumping proteins that settle near brain synapses where they slow and destroy neurons and necessary brain chemicals. The progression of Lewy Body dementia can manifest two different ways. Either the lewy bodies disrupt cognitive function then progress to movement and postural disturbance or they present first with movement problems, as in Parkinson's disease, then progress to cognitive disruption. Over 50% of Parkinson's patients develop Lewy Body dementia as their condition progresses. 80% of people challenged by Lewy Body dementia begin to see and hear things that are not apparent to the normal observer.

Getting a definitive diagnosis of Lewy Body dementia can be difficult because of a lack of awareness but it is important for two reasons: 1) Unlike other dementias there are some medications that could potentially help manage developing movement dysfunctions. Some professionals believe that Lewy Body patients also derive more value from cholinesterase inhibitors such as Aricept or Razadyne however.... 2) Lewy Body dementia patients need to be especially cautious about neuroleptic drugs such as Haldol and other anti psychotics that are commonly prescribed for hallucinatory experience and even anti cholinergics like Sinemet that are commonly prescribed for tremor. People with Lewy Body dementia need to proceed carefully with surgical anesthetics, tranquilizers, and anti depressants because their condition creates unique risks and sensitivities.

A note about resources: Lewy Body dementia has been coined as the 2nd most common form no one has heard of and I found that to be true in online research. It was challenging to find good resources on family experience with Lewy Body dementia. If you're living with someone who has Lewy Body dementia please consider a support group if you haven't already. The national program, Powerful Tools for Caregivers is also helpful and free. It will provide you with community and proven coping strategies. Your community senior center or area agency on aging can point you to a local Powerful Tools class. You'll also find online resources including the Lewy Body Dementia Association. For practical understanding and advice I highly recommend the Lewy Body Roller Coaster blog written by the Whitworths of Arizona.

Library Contents

Caring for a husband living with lewy body dementia

In the blog, Living with a Thief named Lewy Body, Kathy Lowrey chronicles the later years of her and her husband "hubby"s challenge with Lewy Body dementia. In this particular blog, Constricted, she presents a long list of common caregiver frustrations. Like all dementia Lewy Body dementia progression can be unique to individuals. The Lowrey's journey includes heavy hallucinatory incidences, aggression, and injuries that result from falls. This account is long, detailed and raw.

The Terrorist Inside My Husband's Brain is a pull-the-punches overview of Robin Williams' final months. In this address to the American Academy of Neurologists she highlights one of the most deceiving symptoms of the condition writing, "Typically the plethora of LBD symptoms appear and disappear at random times—even throughout the course of a day. I experienced my brilliant husband being lucid with clear reasoning 1 minute and then, 5 minutes later, blank, lost in confusion."

What It's Like To Love Somebody overviews the story of Pat and John Snyder and the 12 doctors they consulted to finally get a diagnosis of Lewy Body dementia. John developed his first symptoms at the age of 61 while still practicing law. It began  with personality changes, lapses in memory, and muscle rigidity.

This touching set of videos profiles a young couple living with dementia. The host of the videos, the wife, is a nurse. As she explains, she started the business A Caring Abode in hopes it would enable her to stay home with her husband who has dementia. She's sharing her experience to document for her own memory and to help other people who may be struggling with similar circumstances. In Episode #1 we meet her husband who has been diagnosed with Lewy Body Dementia at the age of 45, Episode #2 the couple talks about trying to do things they wanted to do with the time they have and the stress of dealing with insurance companies, Episode #3 the couple talk about specific symptoms they're dealing with, Episode 4 the couple talks about medical appointments and support from people who see the video, Episode 5 the couple talk about the stereotypes they get from people including the medical community. They also talk about outbursts and dealing with disturbing behavior. Episode 6 they both grapple with feedback from the videos. The couple is also adding Q and A videos. In Q and A 1  we learn about the love story between these two. In Q and A 2 we learn more about their life. This series is ongoing as of Feb 2021.


Caring for a mother with Lewy Body dementia

The Lewy Body journal is maintained anonymously by the children of a mother who was diagnosed in 1999. The main journal is very detailed including daily observations like the weather as well as how medical equipment was sourced and paid for and the difficult dynamics and ambivalent feelings that present when unresponsiveness or challenging behavior is present. Also at this site are the journals of other family caregivers some of which were posted as recently as last year.

In My Mother Asked Me To Scream For Her.. British author Catherine Deveney describes her gradual process of learning that her mother had Lewy Body dementia and notes that so many people are still never diagnosed. "Most difficult," she writes, " was seeing my mom's personality swallowed up."

Life With Mom and Lewy Body Dementia is maintained by Tony Hunt. His mother was diagnosed in 2013 and his cousin is also struggling with the disorder. Hunt combines a detailed journal with deep resources documenting what he's learned about navigating the medical system. See here step by step lists preparing you to cope with the long journey. Unfortunately the blog format makes this a little hard to navigate but the blog archive is in the right margin slightly down the page length.

Molly's Movement is an advocacy project started by Dubliner Joey Daley. Every week he posts a video documenting visits with his mother who lives with Lewy Body dementia. There is a commercial element to this project that walks a line of exploitation and propagates some inaccurate views such as: people with dementia are like children because they are frightened and anxious, as Joey states. People with dementia have brain damage. They are adults struggling with the complexity of losing capacity. They are not children and it is counterproductive to treat people who are ill as though they were children. However, the awareness the series is cultivating may indeed bring needed government support for families struggling to care for loved ones with dementia.


Caring for a father with Lewy Body dementia

Joy Walker, blogging at Ten Plus Years of Care, Commentary, and Cleaning Up is a genx caregiver for her father who has Lewy Body dementia. Many of her recent blogs focus on help for other caregivers and reflections on those ten plus years of care for her father. One of her responses to the journey of family caregiving was to write a book to help other caregivers. She donates 30% of her profits to the Lewy Body dementia Association.

Themiya tells the story about her father's battle with Lewy Body. "It feels like he's losing his freedom to be the person that he always used to be," she says.

In Lewy Body dementia, Dad, and me an anonymous blogger chronicles two years of at home care for her dad in 2008 and 2009. Think it's hard to find information about Lewy Body dementia now? It was very hard 7 years ago when this blogger was active. Also at this site is an account of the transition from home to facility. And, if you scroll down the page you'll find links to other similar blogs.



Friends and Family caring for a loved one with Lewy Body dementia.

The video below is one of several posted by a loving daughter of Henry G Franz who lived with Lewy Body dementia in 2008-2009. According to the internet he passed away in May of 2010. This video, set to the song, "Everybody Hurts" features photos beginning with his marriage and ending with his transition to a care facility. Dementia is a family affair.



Sometimes tough medical conditions impact our public figures. We learned that Robin Williams was a Lewy Body dementia sufferer after his suicide in 2014. In 2020  basketball fans were saddened to hear that Jerry Sloan, long time coach of Utah Jazz died of Parkinson's which had progressed to Lewy Body Dementia. In the video below the sports world first cames to terms with the news.  Sloan's wife, Tammy, explained that being his caregiver meant "every day is a different day. Some days he's fine, and some days he's not so fine," when she spoke to the Salt Lake Tribune.