My husband has been diagnosed with mixed dementia. At his last appointment I told his doctor things that I noticed were changing and tried to ask some questions/get information. All his doctor was saying is there’s no cure for Alzheimer’s. I felt like he wasn’t even listening to me. I was hoping he would give me some information about support groups and managing the disease. All I got from him is to follow up in a YEAR. Isn’t that a long time between visits?
I also agree with Steve. See a different neurologist. I would also suggest a memory care clinic if there is one close to you. They specialize in the issues we are going through. It is important to have a good relationship and trust in your provider. We see our neurologist at the memory care clinic one a year which right now is fine. There are changes, but none that I feel need any meds. If we needed something I would make an appointment, however those take time, but we can send our providers a message through our patient portal and I get a re faster that way. Our PCP is a very good resource also. I wish you luck in finding a provider that will meet your needs.
My Dad's PCP was very lax about it also. When i first noticed early signs of a problem, i insisted on coming with him to his physical, got Health Care Proxy status, and insisted on a Cognitive Function test. She blew it off, as you noted, as if "nothing can be done", presceibed some donepazil, and said, see you in a year. Well, we followed instructions, but one year later, the cognitive functions took a nosedive, and executive functions were deterioriating. It took me six months to get a referral to a neurologist, and another two months to organize the different tests in the workup. 3/4 of a year later again, finally had ruled out some things, and landed on Alz, but now Advanced. Only 2.5 years in, loss of most communicative skills, and here we are 3 years in, and executive functions are gone, with 24/7 supervision necessary. It breaks my heart that had we had access to Alz resources early on, day programs, social programs, nutritional counseling, meds and supplements, etc, the progress might have been slowed down. Now it is too late for those services to help much. If you arent getting good medical guidance in Early Stage, PLEASE seek out services now. You may not "need" help (yet) but it will help to be involved in some sort of program for helping manage this, and they can not only help slow it down, but be a resource on how to proceed when things DO progress to point of needing more help. That way you dont find yourself adrift at sea without a paddle, like i am, a caregiver for Advanced Alz patient and just now starting out looking for help. Get help now. Geriatrician. Office for Aging. Local Senior Center. I wish i had not taken the first docs word for it that "nothing can be done". ....
My wife was diagnosed with a neurologist, appts was every 6 months with very little information, never return calls, found a Geriatric psychiatrist with 45 years of practice. He adjusted her meds and she is so much like she was before . And he listens and calls back.
The doctors can only run test. It’s up to you to do the research. Contact your state Alz organization and check out Teepe Snow , she has helped me . Also books The 36 hour day , when reasoning no longer works and many others. I was told told the same , see ya in 3 months. You have to build a team of doctors. Primary care and the neurologist must be on your team. Make friends with their nurses , they can be a tremendous help . If his condition changes call them. Keep a journal every day of what goes on , so you can remember. Good luck and take care of yourself..
Our visits went from once a year, to six months, three months, every month, depending on severity of symptoms. Never hesitate to ask for an appt. if you need one or if you notice alarming symptoms. I’ve called dementia support lines too.
Rina