Someone in our local Lewy Body Dementia (LBD) support group shared with me that there’s a Lewy Body Dementia Canada website. You can find it at lewy.ca (or lewybodydementia.ca – both work). The site was launched in November 2015 by Timothy Hudson. Timothy notes that he keeps his Facebook page more up-to-date than this website.
Nonetheless, I came across several worthwhile pages on Lewy.ca, including this article on the top 10 priorities after an LBD diagnosis. (Actually, the article is a list of 11 items.) The list was created by Timothy Hudson in collaboration with a group of caregivers on an LBD caregiver Facebook group (www.facebook.com/groups/lyndseywilliams). I think all of the items on the list are still relevant even years after the diagnosis.
The priorities are:
1. Actively advocate for your loved one.
2. Find out what they want for care and quality/quantity of life.
3. Get Powers of Attorney, both for medical care and finances.
4. Rigorously assess finances.
5. Be ultra careful with medications.
6. Get a supportive specialist or Neurologist and partner with them.
7. Keep your loved one and yourself socially engaged and physically active.
8. Join and actively participate in a support group online or in person — ideally, both.
9. Keep learning and researching.
10. Remind yourself that you are stronger than you think, and that you can get through all this.
11. Forgive. Be patient. With them, with yourself, and with everyone involved.
You can find the details behind these priorities here:
www.lewybodydementia.ca/top-10-priorities-after-lewy-body-dementia-diagnosis/
Top 10 Priorities After Lewy Body Dementia Diagnosis
April 24, 2016
Lewy Body Dementia Canada
Robin