First appointment coming next week with PCP who is recommended as specializing in geriatrics and dementia. Practice group runs a memory clinic in affiliation with local university. First appointment is with social worker for interview and testing I assume. Consult with PCP follows 10 days later. I will send in advance a letter to social worker and PCP with family observations and concerns. Optimistic that this specialist will be treating LO for years to come, my question to those of you who do have an effective relationship with your LO's doctor is this. What is the key to that relationship? I mean, to be realistic, there is the patient, the LO with the disease. But s/he has dementia and is not a reliable reporter of anything; so, really, you the caregiver is like the alter ego of the patient who deserves to have input also and to guide decisionmaking since you have HCPOA and are the one that the patient confided in and instructed when s/he was able to early on. How do you build a good relationship with the doctor as your LO's advocate for personalized care? Thank you for any experiences you might share. SCBeth

Just cultivate a nice dialogue, Beth. That's how people get to know each other. Talk about the issues. Try to understand each other. Just as you would in any relationship. And be a good listener. And when you need clarification, ask for it. In laymen's terms. And at each visit, have a list of your questions, or topics you want to discuss and points you want to make. --Jim

The only thing I can think of to add to Jim's suggestions: be sensitive to when the PCP wants to speak with your LO, rather than with you. Yes, the ADLO is not a reliable reporter from YOUR perspective, but a really good doctor will want to hear what the ADLO's perspective is ... it can give the doctor ideas as to what might be going on inside the brain and/or the rest of the body, mentally, emotionally, and/or physically. A good doctor also knows that talking directly with the patient acknowledges that, even if the patient is no longer fully functional, s/he is still a person who needs to be treated with courtesy and respect.

I found that by sitting slightly behind and to one side of my husband, the doctor could speak directly with him, but also see if I shook my head slightly or otherwise indicated there was a problem with what my husband said. Then, if the doctor wanted to explore this with me, he would speak directly to me. I take care not to interrupt the dialog between doctor and patient, because I know I may not understand what the doctor is trying to find out.

I like communicating with the neurologist via e-mail before the appointment-- so that I remember to keep my mouth shut when the doctor asks my mother how her memory is... (Yes, if they're a good doctor, they will direct questions toward the patient.)

E-mail also lets me sort of my concerns before the meeting.

Not all doctors use e-mail. You can ask the doctor how s/he would like you to communicate your observations.

Hello SC Beth.
Recently, my Mother was interested in changing docs and I found a geriatric specialist highly recommended. I called his office and asked for a confidential fax # but would prefer an email address. I received the first but email addy was available. Long story short, I called and was able to speak with the new doc immediately! That told me about his availability and care! Have you tried calling to speak with your new doc? It's worth a try! If he isn't immediately available perhaps you can schedule an appointment for a brief telephone conversation prior to your LO's appointment. It's worth the effort!

I just wanted to clarify that the neurologist usually doesn't respond to my e-mails unless there's a crisis,
but she reads them before or during the appointment (In the beginning, I think she saved them for after the testing so that she could be objective..)