Educating Staff

Last week, Susan commented that her mother had been on hospice for a long time but that the experience had not been a good one because the nurses involved had no knowledge about Lewy body dementia. It is sad but true, that some hospice organizations are still working under the misconception that "all dementias are the same". As LBD caregivers, we know that isn’t true.

Naturally, a caregiver’s first choice of hospices is one that already understands the special needs and behaviors of the person living with LBD (PlwLBD). If you can’t find one that does, then the next choice is a group that is open to being educated about the disorder. This holds true, not only for hospice staff, but for a variety of other medical personnel as well. ER staff are a prime example. Since PlwLBD are notoriously likely to end up in an ER eventually, probably more than once, it pays to check out the hospitals in your area ahead of time to find out which ER staff is most LBD knowledgeable, or at least, open to learning. You may have to drive further to get to the more receptive ER, but the better care will be worth it.

When the hospice, ER, or any other staff is not knowledgeable but open to learning, it often becomes the caregiver’s job to provide the training. Most caregivers have had the experience of becoming teachers in such cases, like it or not. And most are willing to do so when it means better care of their loved one.

• Consider developing an information packet to share with less informed medical personnel.
• Start with the LBDA wallet card, which you can get from the LBDA website.
• The LBDA website has a wealth of information available besides the wallet card. Copy some of it off and add it to your packet. Choose articles that are short and to the point—there’s more chance they’ll be read!
• Our 5/29/15 blog, Educating the Hospital Staff, includes a list of items for your packet, including information that is specific to your loved one.
• Check out the Care Partner Booklets on LBDtools.com/carepartners.html. They have some great suggestions for information to share.
• Timothy Hudson’s webpage, www.lewy.ca is another very helpful resource with a multitude of articles.
• Teepa Snow teaches about using her 'Positive Approach" method with LBD patients. You can find many of her free Youtube videos here or go to her website where you can buy longer DVDs. She is a great teacher and fun to watch. Teepasnow.com Her videos are as appropriate for professionals as they are for family caregivers.
• https://www.youtube.com/results?search_query=teepa+snow
• Both of our books discuss the importance of choosing teachable professionals and what information to share.
• Finally, do make use of the LBDA Helpline, 1-800-LEWY-SOS, (1-800-539-9767). Anyone, including professionals, can call and talk to experienced caregivers about anything to do with LBD.

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

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