LBDhttp://www.lewybodydementia.ca/
*Click on the red words to take you to the links
Associations and general information:
Lewy Body Dementia Association
Time to nursing home predictor
This tool was developed based on the decline of hundreds of dementia patients. It helps predict how long a patient will have before nursing home placement and death based on their symptoms and the progression of others with similar symptoms.
Fast scale
This is a scale developed for Alzheimer’s patients as a way of following their progression with the disease. Many doctors use it for all dementias in order to keep track of progression.
The Phases of Lewy Body Disorder
Seven stages or phases identified by caregivers for a basic description of progression followed by many with Lewy Body Disorder
Hospice criteria
This is a printable card that gives the criteria for Hospice as well as a breakdown on the FAST level for dementia
QDRS or Quick Dementia Rating System
This 10 question test provides an assessment tool for keeping track of progression.
Lewy Body Composite Score
This test was developed for doctors to use to determine if a person has Lewy Body Dementia. It takes about 3 minutes.
Anticipatory grief
Dealing with the longest goodbye
Another article on Anticipatory grief can be found here
Five things you should never say to someone who has dementia gives examples of the types of conversations you should avoid when dealing with someone who has Alzheimer’s/dementia
Online support groups:
LBD Caring Spouses-On line support for spouses only
Lewy Body Dementia Carers facebook group.
The Raw Side of Dementia Caregiving Facebook group open only to caregivers past and present.
BLOGS:
The Lewy Warriors A blog by caregivers for caregivers.
The Lewy Body Rollercoaster A blog from Helen and Jim Whitworth, authors of the book “A caregiver’s guide to Lewy Body Dementia,” a highly recommended resource for those dealing with LBD.
Lewy Body Dementia A blog filled with useful tips and information by Timothy Hudson.
Lewy Warriors 
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Finally I realize that my 91 year old father has LBD, not Alzheimer’s. I have Chester in an independent living apartment and I stop in every day to help him out. Assisted living will be next but I want to make him feel like he has some control over his life for as long as possible. I had to bring him back from Florida 2 years ago- He could no longer pay his bills or take care of every day tasks. He’s been falling a lot and has that “forward” tilt when walking. He plays with his tongue a lot and stairs. Food doesn’t stay down at times. He has good days and bad days- I never know what I will find from day to day. I hate seeing him like this. Does advanced age have anything to do with how long he’ll live? He was diagnosed with Alzheimer’s incorrectly 3 years ago.
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There are many factors that play into life expectancy and it varies from individual to individual. Age, general health, etc., all make a difference. It’s also important to note that around 50% of those with dementia have more than one kind. It’s possible he has Alzheimer’s and LBD. Blessings to you on this journey. It’s a tough one.
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Yes, I agree that there may be many different dementia’s that could be in play in my dad’s situation. But every time I would read Alzheimer’s or Parkinson’s dementia, it would start with “my mom” or “my wife”. Not much information out there on men until I found Lewy Body Dementia. (more prevalent in men than in woman) It fit him to a tee. One good day, very clear in thought and chatty and the next day totally confused and not speaking much. They describe it as a roller coaster. From what I’ve researched, this can go on until the end unlike Alzheimer’s where all memory will be totally gone. What lead me to the Lewy Body site was that my Dad keeps sticking his tongue in and out of his mouth and circling his lips. Come to find out people with Lewy Body will do that. It was like a light went on when I discovered the sites describing it. My dad will be 92 in June 2018 so we’ll just continue on our path. Good luck with your situation and thanks for your comments.
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My husband has had LBD since 2012 and in long term care since December 2018 he was a very kind quiet man for our 56 year marriage and is still…..he really get good use out his wheelchair but can go into the wrong room and touches things that are not his. His sister passed away recently but we could not tell him. He only remembers our oldest son who walks him a few days a week but reading all the articles I realize he has the Lewy Lean so very hard to get him to sit up straight and has started to get a hump. He loves to eat and even things like sweets which he never wanted. He is 78. He does not partipate events at the home as he was a top athlete and they do not have those kind of activities. I am semi handicapped so some days are very difficult he has no idea of that even though I walk with a cane…the larger type which holds my elbow and helps my balance. He swears when frustrated. He is also prone to bladder infections. I have learned a lot reading this blog?.
We always say I love you which he will say back to me. He does not like to kiss which may be because of a runny nose which a specialist said it was because he was old so I look at older people ….no runny noses. I will be moving closer to his facilities. What I miss most were the little chats we had about nothing in particular. He still has an infectious giggle and a huge grin which his caregivers really like. I am watching him change so quickly which is the hardest but reading has helped.
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Maggie, I’m so sorry you’re having to deal with this. It’s a difficult journey, but educating yourself is a smart step. Blessings to you. I’m glad this blog has helped in some way.
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I read the blog everyday and anything to do with Lewy body as my husband fades away one day and then the next he is talking about my cousins. I love it when he grins at the people he likes and his infectious laugh. You do not stop loving them even with the changes.
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