“It is . . . important to note that we found worry about performance . . . to be endorsed the most strongly by LBD caregivers.  This finding may reflect the fact that there is not as much information available about care of people with LBD compared with AD [Alzheimer’s] or other forms of dementia.  In particular, caregivers may feel isolated and not be able to find supportive medical professionals or community services.  Thus, they may be more concerned than other caregivers about how well they are doing.”

Leggett, Amanda N et al. “Stress and burden among caregivers of patients with Lewy body dementia.” The Gerontologist vol. 51,1 (2011): 76-85. doi:10.1093/geront/gnq055

“Supportive medical professionals” and “community support” would be a godsend.  More about that in a minute.  But even with that support, would it be possible to feel competent as a caregiver for someone with LBD? Who feels competent responding to someone who is telling you that he’s sad because you’re dead?  How would anybody feel competent responding to someone with a months’-long certainty that his left shoe is a computer, but he’s having trouble accessing the databases?  Or when he tells you that his left hand is missing?  We could dream of a hotline for LBD caregivers staffed with people who really are competent in responding to hallucinations, Capgras, and all the other eye-widening LBD cognitive phenomena. 

But when somebody is trembling with anxiety about the hand that you can see and he can’t find, you can’t hit pause and call the hotline.  You have to respond with whatever you can come up with.  Touch his fingers one by one and ask each time, “Can you feel that?”  Hold his hand and say, “You could feel every one of these fingers and your thumb, so they’re all present and accounted for.”  Is that a competent response?  Who knows? 

The researchers are right: feeling incompetent adds to the burden of caring for someone with LBD, but the literature makes you wonder whether the researchers have any experience with actual healthcare systems.  I couldn’t even get a clinic staff member to meet me at the door and help me transfer David into a wheelchair.  I’m sure medical professionals would like to be “supportive,” but they’ve got productivity quotas to meet and electronic charting to swear over.  There is zero corporate provision for time-consuming support from medical professionals.  There is zero political will to build community services for caregivers of anyone, healthy or sick, of any age.