Some Helpful Links

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Some Helpful Links

This month is Lewy Body Dementia Awareness month. And so we’ve compiled a list of links to resources that you might want to keep handy. We actually started with several of the links suggested by Lisa Cooke, in her Lewy Warriors blog, and then added a few others. https://lewywarriors.wordpress.com/helpful-links-and-groups/

Finding The Right Lewy Body Dementia Specialist…someone who is familiar enough with LBD* to be able to diagnose it vs a different dementia can sometimes be difficult. Most people get at least 3 other diagnoses before they are diagnosed with LBD. (excerpt from  A Caregiver’s Guide to Lewy Body Dementia.)

Is it LBD or something else? The Lewy Body Composite Score is a test was developed by Dr. James Galvin and his team for doctors to use to determine if a person has Lewy Body Dementia. It takes about 3 minutes. Dr. Galvin is on the LBD Scientific Advisory borad.

The Phases of Lewy Body Disorder  Describes seven stages or phases identified by caregivers for a basic description of progression followed by many with Lewy Body Disorder. Unlike Alzheimer’s, LBD isn’t easily categorized. This attempt by the Caring Spouses online support group is the best we’ve found.

5 Communication Tips for Dementia Caregivers.  PlwLBD* tend to have many communication issues, and these tips can help.

Driving Guidance.
At the Crossroads is a booklet published by auto insurer, The Hartford, about when to quit driving. It ends with a checklist of danger signals.

Dementia and Driving Resource Center. Another thorough review of how to deal with this issue.

Residential Placement:
Choosing a Memory Care Center. Memory Care Checklist: What to Look for, What to Ask. There are actually a lot of these questionnaires on the internet. To look for others, just Google “questionnaires about dementia care.”

Residential Placement Without Guilt: This blog also covers some LBD specific issues that most questionnaires don’t cover.

How long do we have? This Time to Nursing Home Predictor 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. Always remember that this tool only tells you what the average person will do. Your loved one could last much longer…or not as long. But it does give you a guideline to go by.

A progression scale: The Quick Dementia Rating System (QDRS), with its 10 basic questions are a quick and easy way for doctors, and caregivers as well, to keep track of progression.

Another progression scale: The Fast Scale is used for developing the hospice criteria below. It was 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.

Hospice criteria. This is a printable card that gives the criteria for Hospice as well as a breakdown on the FAST level for dementia. It shows how difficult it is to go onto hospice with only dementia. However, PlwLBD have so many physical problems that they will often qualify via them rather than the dementia.

* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
BPSD: behavioral and psychological symptoms of dementia

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.