My husband has recently been diagnosed with Lewy Body Dementia. Looking for any info. Thanks!

Contact them: ______________________________

Lewy Body Dementia Association
Nonprofit organization

Description
The Lewy Body Dementia Association is a US nonprofit organization based in Lilburn, Georgia, and "dedicated to raising awareness of the Lewy body dementias, supporting people with LBD, their families and caregivers and promoting scientific advances".

goodlife: Perhaps you can garner information on Lewy Body Dementia by reading the book, 'The 36 Hour Day.'

Hi. It's me again.....I just replied suggesting you might get information from hospice. I do want to clarify that your loved one may not be hospice appropriate at all right now. But hospice is very accustomed to caring for all types of dementias and differentiating for lewy body vs others. Please don't be frightened by the suggestion to call hospice of choice for info. It is simply one good resource that may be able to give you and your family a lot of support info. now and down the road.

Best regards

You may get some helpful information by calling a local hospice of your choice; tell the clinical nurse director about your loved one's diagnosis of Lewy Body dementia and his present symptoms, challenges; ask the clinical nurse super to meet with you and review some symptoms and management and, also what symptoms/ decline may make him " hospice appropriate" for hospice care ( in your home if you prefer of course). This will give you some guidance and, knowledge that hospice is about living and quality of life for the pt as well as support for you and the family.

Hello, goodlife. I believe that my
88-year old Mother has Lewy
Body Dementia. One very useful
resource that I found is a book called "A Caregiver's Guide to
Lewy Body Dementia" by Helen Buell Whitworth and James
Whitworth (Second Edition).
I found it at the local Library first and then wound up ordering myself a copy online. Jim Whitworth is one of the co-founders of the Lewy Body
Dementia Association (LBDA).
You might find this book very helpful- I have! Good luck to you.

The Lewy Body Dementia Association website is lbda.org

Inform yourself (and be prepared to inform medical professionals) about adverse reactions to common drugs. Drug reactions can be severe and long lasting, including exacerbating the hallucinations.

Here is a link to a chat forum specifically for caregivers to loved ones suffering from Lewy Body Dementia:

https://www.smartpatients.com/communities/lewy-body-dementia

There is also a section for info and resources on that site.

Also, there is a website you can sign up for specifically for caregivers to folks suffering from FTD, here:

https://www.theaftd.org/

Best of luck

My Papa had Lewy Dementia. He heard music 24 hours a day, Christmas carols, religious music mostly - drove him crazy at first, later it comforted him. Also, his anxiety was very high. Would scream about back pain, we’d take him to ER, tests and pain meds later still screaming. I’d suggest anti-anxiety medicine, all quiet, crisis over.

So, it’s a matter of managing symptoms that pop up, as well as the balance issues that come later.

Stay strong, and remember to take care of yourself. You won’t be able to help him if you get run down. The most important thing you can do is to get someone to spell you so you aren’t in the house 24/7. Hugs from me to you.

https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025

My Dad was diagnosed with Lewy Body a couple of months ago. As a career military man, his hallucinations have been quite violent. It has taken 2-3 months to get things under control where he is able to live contentedly and function again. Medication and social connection seem to have been key in his case. Is have to look up the name of his 2 meds, but your dad's could be totally different anyway. People from Dad's church now visit almost daily, as do family. Those of us at a distance call daily. He has improved greatly. I guess I'm saying keep trying. You will find what helps your dad's symptoms. It's a tough road.

Sorry for the double diagnosis. How old is he? How are YOU doing?

Goodlife, welcome to the forum. Here is some information regarding Lewy Body Dementia to give you a start.

https://www.agingcare.com/topics/12/lewy-body-dementia

Lewy's is quite unique in presentation. Are doctors now thinking that your husband has several types of dementia, or are they thinking that their first diagnosis is incorrect and that this is presenting more as Lewy's. The progression of Lewy's is often different than other kinds of dementia. Some go down by stairsteps with plateaus at different levels, but always a downward progression. Some go down like a slide, inexorably down such as Alzheimer's. Lewy's can be unique, especially earlier, in its hallucinations, and in the fact that it can be very very affected by anxiety. Can be better some days and worse others. My brother was diagnosed with Lewy's using the words "probably early Lewy's" just by his symptoms. I learned all I learned about it over the several years he had it until his death from another physical cause. The internet is absolutely packed with information on Lewy's so do research. There will be more than you can read in a lifetime. Facebook also has some support pages and as of three years ago one gentleman who ran a page actually had the disease and lectured about it. I have no kept up on any of that since my brother's death.
I wish you good luck. There is so much information out there, but an individual's progression is as individual as his or her own fingerprint.