Because so many of you had problems with being believed by doctors and other professionals, I was really surprised at how little of that I have experienced. I'm really very thankful that it has been so much easier for me than for some of you. I asked the family doctor for an evaluation, and because I knew so little my husband got sent to a therapist who basically knew which kind of doctor we ought to go to. It took us a while to get there because my husband didn't want to go to yet another doctor and I didn't force him to go the first time it came up. Both the neurologist and his office have been very polite and very good to me.
Even when I called in the police what I got was polite and caring treatment both from the policeman and from the Assistant District Attorney. I don't think he knew a whole lot about dementia, but she definitely did.
Still if there had been the kind of survey that we are talking about when I needed it, things would have gone a whole lot faster. And my husband would have been on the drugs earlier. What would really be useful would be something that could be administered by a nurse or doctor's assistant in a family doctor's practice as a way to know who needs to be referred.
Starling, I've never had any problems, either. When I finally convinced myself that my husband HAD to see a doctor about the behavioral problems I was seeing, he agreed with me that his PCP wasn't the right person to consult. (Probably fine as a physician, but brusque and sometimes short-tempered ... not the type you can talk to about something as delicate as your husband's mental status.) So I searched for a geriatric specialist. At that time, all the ones I could find limited their practice to nursing homes, but one of them recommended a doctor who wasn't certified in geriatric medicine, but preferred working with older patients.
He was the dearest man, very caring and tactful. He did exactly what you're supposed to do, to diagnose dementia syndromes.
Because he knew I couldn't tolerate the diagnostic process dragging out forever, he did what he could to expedite a visit to a neurologist. The one who could work my husband in wasn't exactly my ideal doctor for him, but she had enough information by then that she was pretty sure what the diagnosis would be before we ever walked in the door. And she recommended the Alzheimer Disease Research Center, and they have been great.
My husband's dear PCP has disappeared on us ... the clinic never let us know he was leaving, and they won't tell us where he is. So now I'm searching for a new PCP, and I asked the woman running the clinical trial at the ADRC for a recommendation. The university medical center has a SOCARE facility, and the doctor there that she recommended has excellent credentials. We're also switching to a neurologist who works with the ADRC, to make sure that my husband has a neurologist who knows what's what.
I think the big difference is whether you seek help from someone who is really qualified. Too many people think all neurologists are qualified to work with AD patients, for example, and that simply isn't true. And of course, general practitioners cannot be expected to keep up with the latest info on every disease; so again, we need to search for PCPs whose primary interests are internal medicine and geriatrics.
Good doctors do listen to spouses. If a doctor doesn't listen, then find a new doctor.
Because it was the therapist who wanted us to see a neurologist, and told the family doctor that, we got sent to the right kind of neurologist. We are new to the area, and it is only now about a year later that I've found out that the neurology group we got sent to is THE group in this area. Doesn't surprise me. Our family medicine group knows all the best specialists. Every time we have been sent to someone, the folks around us who have lived locally for decades have always been impressed with where we got sent.
There is no local dementia specialty study group, but that therapist was at an amazing rehab hospital. They do miracles every day with stroke patients. So they had the skill to recognize someone who wasn't going to get better. This is still a semi-rural area, but we have great health care.
I think that finding a family doctor by asking for referrals from the clinical trail people is a good idea. I found my medical group by asking at the local pharmacy. The pharmacist sent me to her own medical group. I've done a lot of moving around and what you are doing and what I did has worked for me multiple times in multiple places.