This week’s blog is showing up very early so that we can tell you about a couple of wonderful booklets. This week, at the International Conference on Dementia with Lewy Bodies in Ft. Lauderdale, FL, Dr. Rosemary Dawson is making a presentation on the booklet she developed for care partners of people with dementia with Lewy bodies (DLB – also LBD). It has been evaluated by healthcare professionals including pharmacists and has been pilot tested by 20 care partners. Now, she has generously made it available to all of you. You can access and download the 34-page Care Partners’ Role in Medication for Loved Ones with Dementia with Lewy Bodies at our http://www.lbdtools.com/carepartners.html, the website of Jim and Helen Whitworth (yes, us!). This is a public access website, so please share it with others who need to know about what care partners can do:
1. Be proactive: Learn as much as you can about medications and DLB.
2. Keep good records: Share information with your loved one’s healthcare team.
3. Partner with a pharmacist: Find a pharmacist knowledgeable about DLB.
4. Collaborate with the DLB doctor: Your loved one’s doctor is the key to effective medication.
5. Questions about Prescriptions: Obtain this information about each of your LO’s prescriptions.
6. Be aware of polypharmacy: Multiple medications can pose risks to your loved one.
7. Manage medications: Be prepared to administer your LO’s medications.
8. Administer your loved one’s medications: Learn what you can do to make this activity go smoothly.
9. Be ready for problems administering medications: Sometimes people with DLB have difficulty taking medications or resist doing so.
10. Two variations: Here is what you can do when your LO can still perform some medication-related tasks and when your loved one is not living at home.
11. Explore non-pharmacological approaches: Not all DLB symptoms require medication.
12. Be prepared for ERs and hospitals: Standard protocols in ERs and hospitals can pose risks to your LO.
Dr. Dawwon is also making a presentation at the same International Conference on Dementia with Lewy Bodies on the booklet she developed with Pat Snyder (author of Treasures in the Darkness) and Jeff Maruna for care partners of spouses with Lewy body dementia. The authors have made this booklet available for free as well. You can access and download the 122-page Being an Engaged Care Partner: A Guide for Spouses of People with Lewy Body Dementia at the same webpage as above: http://www.lbdtools.com/carepartners.html. Again, feel free to share it with others who need to know about what spouses ( anyone else, for that matter!) can do to be engaged care partners:
1. What it means to be an engaged care partner
2. Preparing yourself to be an engaged care partner
3. Creating an LBD portfolio
4. Finding an LBD specialist
5. Developing successful relationships with the LBD specialist
6. Before, during, and after visits to the LBD specialist
7. Before, during, and after trips to the emergency room
8. Before, during, and after hospitalizations
9. Handling problems and conflicts
This Guide has been reviewed by content experts, and it is in its final draft form. It is being evaluated by healthcare professionals and care partners between now and February 15, 2016. The authors ask that if you read all or part of the Guide, please complete the survey that is described in the Guide.
Jim and I have read both of these booklets and we believe that they are well worth your time…and that once you’ve read them, you will keep each of them close by for a much referred to reference. Do download these and use them.
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.