It is common knowledge that not all doctors are educated on dementia, it's symptoms, diagnosis, and treatment. As we have seen here, unless you have contact with this disease it is very difficult to understand the early indications and long term effects. There is also the knowledge that there is no effective treatment or cure. There is a HUGE amount of denial related to this disease. Not only on the part of victims and families but also the medical profession.
My Dad was misdiagnosed with Alzheimer's when he actually had Vascular Dementia. My Mom was misdiagnosed with depression when in fact it was Alzheimer's. Even with a proper diagnosis her family physician didn't understand and let her drive and live at home with Dad who also had diagnosed dementia. He assured us all she just needed to "focus" better! DUH!! Many doctor do not do the MMSE in conjunction with physicals. They are not trained to deal with the cognitive issues of the aging. When you sit in an ER and watch a doctor quizzing a dementia patient you understand that the doctor doesn't have a clue! They just enter "Unable to get information because patient was uncooperative" on the chart and go to the next person. Some that do use the MMSE are not sure what to do with it when they finish it. I know my local Alzheimer's Association is just beginning to address these problems with training programs for doctors and hospitals but it has been VERY slow going.
At some point a person with dementia may realize there is something wrong. At the very beginning they may be cooperative because they are thinking rationally most of the time. But there are just blips of bizarre behavior and so many just dismiss these infrequent incidents. By the time the symptoms are bad enough for us to realize there is something dramatically wrong it is usually in the mid stages. By then the thinking process does not allow most to understand that they are not thinking coherently. There is denial as well. Who wants to admit that they or a loved one has an untreatable and incurable disease. That is when somebody has to step up and get the appropriate testing... more than just a visit with the GP that has not recognized the problem already.
I may not like the president but I don't forget who he is. I may not be happy with a person that visited me last week but I don't forget they came by. I may be having a bad day but I can still find my way home from the store. Yes, in the early and mid stages they can function marginally in a familiar surrounding. Yet you will find small things they become unable to do. Meds are a huge problem. That takes a multistep process of thinking. Which pills go in which box, what time of day it is and what time do you take it. It can be confusing to even us if there are lots of medications and impossible for someone even in the early/mid stages. Dosage boxes can help for a while but not the complete answer. You can put the meds in the boxes for them but they still have to remember what time it is and is this the time to take them. Dad would forget what day it was. He would take Monday morning's meds on Monday morning but then at lunch time he would decide it was Tuesday so he would take the rest of Monday's, Tuesday morning pills, and then the Tuesday lunch. Then he would be upset because the Tuesday night pills were not there. That was complicated with Dad getting the wrong box and taking Mom's pills, then a few minutes later finding his and taking them as well. Medications can be the first problem that causes an unsafe condition for someone living alone with dementia. Two with dementia only complicates the problem.
Bringing somebody into the home can cause as many problems as it solves. You have to remember that they are confused and therefore do not want another person in the house that causes more confusion for them. Beyond that they have that paranoia and suspicion going on in the brain. They may think this person is a spy, especially if you get information from there about what is going wrong in the house. They may feel degraded by having to have somebody care for them. They are not accustom to somebody else being in the house and it seems inappropriate to them. Therefore they rebel. They do not understand the necessity. It seem inappropriate.
Throw into that mix the fact that the dementia is not consistent. Remember that the misfiring of the brain is not consistent. They may gather good information for a few days and then miss a critical piece of information. There are periods where they seem absolutely normal and then times they are completely lost and confused. The brain will "fill in the blanks". If there is a piece of information missing, the brain will make the pieces fit so it makes sense. That is why they can seem so deceptive. They are fixing what is missing and they truly believe it. So dementia seems to come and go in the beginning. There will be moments we can pick up on but then it all goes back to normal and we think it was just a momentary thing and all is well. Then the next moment of bizarre behavior hits. We do the same thing. It is only when the behavior becomes consistent that many decide it is a problem. In fact that first moment, that is out of the ordinary, is of the most concern.
All of this is why I always recommend further testing if you have any suspicion that there is a cognition problem. Something beyond the GP and an MMSE. That is ONLY a starting point. Memory assessment and cognitive testing facilities are becoming more popular. There are geriatric neurologist and psychiatrist that are trained in cognitive problems who can diagnose. If you think something is wrong... there is problem something wrong and you need to find out what.
I have a friend who was concerned about cognitive decline. She was scared to be tested because her sister had Vascular Dementia. But she was finally convinced to go to the doctor and scored 27 on her MMSE. She had a complete physical and actually set up an appointment for further cognitive testing. What she found out was her B12 levels were extremely low. She was put on B12 and her levels monitored until they were normal. At her cognitive testing, she passed with flying colors including a 30 on the MMSE. I have another friend who's father actually had NPH and after having a shunt placed he returned to normal cognition. Myself, it was just a side effect of statin medication
SO please do not just sit and do nothing. If it is something that can be reversed you want to know that and do what is necessary. If it is some form of dementia, the diagnosis will give you time to plan and have time with your loved one before it gets bad.