Right now we have three books in the works (two revisions and a new one) and an international conference poster presentation to prepare. We have help with all of these, but they are taking up my time and I haven't spent much time working on blog entries. As I do once in a while I went back and looked at past blogs. I found this one from 2012. The information hasn't changed, but I'll bet our readership has!
When people ask us about how specific drugs might interact with their LBD, we often suggest that they check with their local pharmacist. And so, of course, the next question is, “How do I find a Lewy-savvy pharmacist?” This is a valid question. Although it is the pharmacist’s job to be aware various drug actions and interactions, they too, may or may not have had the training they need to be Lewy-savvy. And so it’s a good idea to check this out ahead of time.
Go to wherever you get your prescriptions filled and ask the pharmacist some LBD questions to which you know the answer. If you like the answers to these questions, you can probably trust their answers to other questions. However, remember that the same pharmacist may not always be on duty, and so be careful to ask for names and shift times. You might want to do this at several different places and chose the pharmacist you like best, even if it means changing where you do business.
The same applies to anyone who works with your loved one—physical, speech, or occupational therapists for instance, or health aides—and yes, doctors too. In each case, make your questions specific to the service your candidate will be providing. For instance, you would ask a drug question of a pharmacist and perhaps a question about fluctuating abilities of a physical therapist.
Although you may only need your pharmacist to be Lewy-savvy, you need more for those who have more interaction with you and your loved one. They also need to be teachable team players. In fact, for many of those who provide a special service, such as a speech therapist, these last two are the most important. Even if they don’t start out being Lewy-savvy, their willingness to work with and learn from you will make them so eventually.
A team player sees you as an important part of the team. They ask questions about your particular situation and listen carefully to what you have to say. They ask your opinion and include you in final decisions.
Being teachable does not necessarily mean that a person takes what you share about LBD at face value. However, they should be willing to listen, ask questions and do their own research to validate your information. On the other hand, you should be viewed as the expert on your loved one’s unique way of doing LBD—what works for them and what doesn’t.
Doctors, neurologists and other specialists need to have all three of these aspects. They need to be Lewy-savvy, teachable AND team players. However, you can do much of your search for a doctor before you ever meet them. Using word of mouth is often a good way to begin the search. Ask other LBD caregivers who they use and how they like them. If you don’t know of any other caregivers, ask on the LBDA forums or the LBD Caregiver Yahoo groups. (see blog). Also ask for Lewy-savvy doctors and specialists at teaching hospitals and research facilities in your area.
Once you have some names, make an appointment for an interview. Ask your questions and make your observations. Also, you need to be able to share information with the doctor without your loved one present. If this isn’t an option, Showtime (5/25 blog) will become an issue. Even if you decide this doctor isn’t for you, the cost of the visit is worthwhile, simply to “rule out” this one and move on to someone else. Good luck with your hunting.
For more 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
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
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.