I was asked today to fill in for someone tomorrow on a caregiver panel at a professional conference. The topic is how we want the medical system to be changed (improved) in the future regarding dementia. Any thoughts?
There has been a lot of discussion about this in the medical and political communities. First of all, there should be mandatory dementia training for ALL healthcare professionals from aides to specialty doctors. It should be a required course of no less than 20 hours. TEAM WORK and a “care plan” rather than "pay per service" seems to be the way to go to treat dementia. Currently, a dementia patient is seen by a lot of different doctors, many of whom know little or nothing about dementia. Even when they are seen by a neurologist specializing in memory disorders, there is often no communication between that doctor and the others treating the dementia patient. In conferences and at theWashington DC Forum that I attended last year, speaker after speaker talked about team work, communication, and care plans. Once a patient is diagnosed with dementia, a long term care plan should be drawn up that includes medications, activities, caregiver education, counseling and respite. Every doctor that treats the patient should be a participant in the plan, as should the patient as long as able, the caregiver, and family members. Everyone should be in communication via phone calls and at least a face-to-face meeting with all team members every six months to discuss changes in patient status and changes to the plan accordingly.
I wish they would listen more to the family. For a couple of years, when we were pursuing a diagnosis, they refused to listen to any of the changes I had observed in DH. Since we had been married for over 30 years at that point, I saw changes long before the professionals did. But I could have been a piece of furniture for all the attention they paid to my observations.
We had a couple of years of DH being told that he was just depressed. Even when he was on two different antidepressants at the same time, the symptoms didn't improve. We were told he was "too young" for this disease. Did the doctors sleep through all the classes on dementia?
We found out after diagnosis that DH's psychiatrist (the one treating him for "depression") had put in his file at least six months previously that he thought DH had dementia. He didn't bother to tell DH, or DH's family doctor, or me, so we were robbed of time we could have made different plans for our future, like not buying another car.
Now that we're farther along in this journey, what I'm seeing is doctors who don't even want to do simple blood tests to find out if DH has other problems. One of them asked me why I wanted to find out a diagnosis, if we weren't going to treat it. We want to know because he can still feel pain, of course, but he may get to the point that he is not able to let us know he is in pain. If we don't know whether or not he has cancer, he could be in terrible pain, and they would treat his distress with anti-psychotic drugs.
Basically, I wish the medical community would change just about every thing they do in connection with this disease. Sorry, I guess that's too much information. But it really is how I feel.
p.s. Joan, having a care plan and a team sounds like a wonderful dream. Right now I feel like it's just me, doing the best I can with no information from anybody.
Family physicians should never be allowed to utter the words, “You’re too young for Alzheimer’s.” They need to be educated.
Family physicians should administer a standard questionnaire when a spouse or other informant is the one noticing the problems. I have read about a proposed one - Ascertain Dementia 8 questionnaire - don't know if that particular one would work, but there needs to be one.
When a spouse notices problems, and the CAT scan shows no brain tumors or water pressure, the next step should be a PIB PET scan. This reliable imaging test is currently available to researchers, but not to family physicians. THIS NEEDS TO CHANGE.
All doctors – family physicians, neurologists, etc should be required to fully disclose and be completely honest with patients. My DH’s neurologist actually told my husband his MCI diagnosis was good news! Told him only 10% of MCI patients convert to Alzheimer’s. She left out the fact that 10% PER YEAR convert. She withheld information that DH later found out when he requested hard copies of test results – including recommendations that DH be supervised around electrical equipment, stove, etc, and at work on complicated tasks.
Going one step further, Drs. should be required to be straight with their patients rather than agreeing to referrals for testing (driving) they know the patient will fail. Also, more realistic approach to testing. Example: Doing another CT and/or MRI just because it's been a year since the last, but there has been no 'event' of note to warrant it. Or, knowing the patient cannot/will not be compliant with treatment for a new condition--why test. Tests to determine a Dx of something new, if it would facilitate comfort care should be considered even if aggressive treatment of the condition itself will not be done.
Oh. And when the patient has progressed to later stages, Drs. need to be open to stopping meds like cholesterol meds and others--not throwing it to the caregiver to decide. Cholesterol meds can be good but when the cholesterol level is good and the patient is becoming a fall risk, the meds can then become a contributing cause of internal bleeding. The caregiver should notbe put in this position.