Last week was about the behaviors that Ben displayed that instigated his visit to a doctor and the doctor's subsequent diagnosis of LBD. However, his wife, Emily, is having difficulty accepting the diagnosis.
When Ben's doctor diagnosed him with LBD, he was relieved and willing to accept what the doctor said. "I know I've been acting different and now I know why," he told Emily. But Emily was still worried. "I can't believe that Ben has dementia," she said. "Even after the doctor explained the differences, I still can't get my mind around the idea that he has an incurable disease that is going to disrupt our lives. I had hoped for some medication that would cure Ben of his delusions. I can deal with what the doctor called Active Dreams and even the "little people" he sees, but those delusions were making my sweet, loving husband ornery! (See last week's blog for a longer description of Ben's symptoms). Dr. Kennedy didn't do any tests. She just diagnosed him mainly based on my reports. Maybe she's wrong. How would I know? -- Emily
Emily's question can be broken up into several parts:
How can you judge accuracy of your doctor's diagnosis?
Do your homework. If you recognized symptoms that led you to believe your loved one might have LBD before you saw a doctor, read the following articles. They will give you a head start on the questions to ask. (Or read them when you get home from a doctor's visit where an unexpected LBD diagnosis was suggested. They will still give you a lot of insight about what to do next.):
Finding a Doctor to Diagnose and Treat LBD. The LBDA is always a great source of caregiver information.
Get an Accurate Lewy Body Dementia Diagnosis. Tim Hudson always has good, well thought-out information.
What Doctors Should Ask Patients to Recognize Lewy Body Dementia This will help you know how LBD-savvy the doctor is.
Ask questions. Besides knowing what the doctor should ask, there are questions that you should ask too. Don't be afraid to ask about the doctor's expertise with LBD. Has he/she had any training about it specifically--not just dementia, but LBD? How many people with LBD have they diagnosed in the past? How many are they treating now? Next, notice the questions the doctor asks. Are they similar to the ones in the above article?
Expect a referral for support. A doctor well versed in the issues around LBD knows that their patients and family need much more than medical treatment. Expect a referral to a nurse practitioner or social worker who specializes in this support. If it isn't offered ask and if it isn't available, consider it as one sign that perhaps this doctor isn't the one you want to see for this issue.
Don't do this alone. There are a multitude of reasons for finding and utilizing a support group. One of the first is to help you find and recognize a LBD-savvy doctor, and then to know how to deal with this life-changing diagnosis. Find a list of local groups on the LBDA Support Group page. The LBDA also has a list of online groups and so check them out too. Start with these but there are many more. Jim's favorite is Caring Spouses, It is limited to spouses but there are many others. Actually support groups are so important that they deserve a whole series of blogs and eventually there will be. In the meantime, the LBDA lists and this article in Lisa Cook's Lewy Warriors blog can get you started.
Consider a second opinion. Even if you are fairly comfortable with your doctor's diagnosis, a second opinion is often a good idea. In Ben and Emily's case, she needs it to help her deal with the denial she is feeling...the resistance to the idea that their lives will be changing due to Ben's diagnosis. Also, if your first diagnosis was by a family physician, getting a second opinion from a specialist is a good idea. A good family physician can identify a multitude of warning signs and knows when to refer.
To find the right person for your referral, you will need to know what your insurance allows. (My doctor's office staff does this research for me. Your's may too!) And then of those choices, who does your family doctor recommend and why. If you have a choice, check with others in your support group. Who do the they recommend? Once you choose someone, ask them the same questions you ask the original doctor and follow the recommendations in the above articles as well.
If you are still uncomfortable with a diagnosis...if for instance, it doesn't seem to fit the symptoms that your loved one has, don't be shy about asking for a third opinion! The statistics show that people usually see at least three doctors before they are diagnosed with LBD. This makes Emily and Ben's experience unusual. He was diagnosed with LBD right away. This may not be the case for you. Conversely, your loved one may be diagnosed with LBD but not really have it. As it becomes more well known, its many and varied symptoms can make it a kind of catch-all diagnosis. As your loved one's advocate, part of your job is to evaluate each diagnosis against what you already know about your loved one and seeing if it fits. If you don't think it does, ask for yet another diagnosis!
One last warning. When asking for another diagnosis, where are you emotionally? Is it possible that the problem is with you and not the diagnosis? Are you are in denial, as Emily was, and having difficulty accepting a diagnosis that does actually fit? Take a deep breath and check this out before going further!
Next week's blog is about what happens after the diagnosis.
For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's & 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.