You are not the first adult child to face this frustration, and you won’t be the last. After caring for two parents with different types of dementia, I can tell you that the early years are the most difficult. I could recognize that something was wrong with dad and I started to wonder if he was unable to recognize or unwilling to accept a change in his cognitive abilities. My jovial dad, who usually had a quick witty remark or funny story, stopped joining in our dinner conversations.
Not Recognizing Cognitive Deficits is Part of Dementia
What I learned was that there is a medical term for the inability or refusal to recognize a clinically evident cognitive defect or disorder: anosognosia. It is more common in people with dementia than you might imagine. As defined by the Alzheimer’s Association, “dementia is not a specific disease. It’s an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. Alzheimer’s disease accounts for 60 to 80 percent of cases. Vascular dementia, which occurs after a stroke, is the second most common dementia type.”
A recent study reported the overall prevalence of anosognosia was found in 46.7 percent of patients with Alzheimer’s. A second study reported that after a stroke, which often results in vascular dementia, up to 77% of patients suffered anosognosia, at least temporarily.
See a Doctor When You Notice Behavior Changes
Any change in behavior should be something you bring to the attention of a doctor. When my siblings came to town for a visit, dad’s behavior was such a dramatic change for them that they immediately scheduled an appointment for dad with his doctor. Many reasons can create such a dramatic change, even something as simple as a side effect of a medication. My siblings were upset when the doctor shrugged off their concerns and told them to schedule a follow-up appointment in three months. If, as in this case, the doctor does not heed your concerns, you may need to push for testing to identify a cause.
Typically, the first thing a doctor will do is perform a Mini Medical Status Exam (MMSE). The MMSE can be administered by any health professional and includes a series of questions designed to test a range of everyday mental skills. The test includes a simple memory test, the ability to follow instructions, and some everyday knowledge questions, like today’s date. When the first doctor did not even do this simple office exam, we should have requested it.
Persist – One Doctor May Not Be Enough
It took me a year and a half and visits to a variety of doctors to get my dad fully evaluated. When we returned to the doctor three months later and reported the same concerns, we were referred to a neurologist. The neurologist was the first to apply the MMSE and he felt that dad did well enough that we shouldn’t pursue any further testing and ruled out any cognitive issues. I knew something was definitely wrong with dad and should have pursued additional testing, but I didn’t know what options I had.
A year later, and after a visit to the emergency room, dad was finally referred to get a neuropsychological examination (NPE). This exam takes around 2 hours and consists of a variety of tests tailored to each individual. The testing showed that my dad might have Alzheimer’s, which a follow-up MRI confirmed.
Here’s What You Can Do
To get the answers you seek, I recommend that you try the following:
- If your first suggestion, and even your second or third, don’t result in any interest in going to a doctor, see if other loved ones who notice similar issues might help you by corroborating your concerns. Let dad know that some of the symptoms could be simple issues that can be reversed. If it does turn out to be a cognitive issue, early diagnosis offers more options than the “let’s wait and see” approach.
- Ask the doctor to administer the MMSE, which is a quick way to get some insight into possible cognitive issues. While my dad did well on the MMSE (scoring 28 out of 30 points), even after a diagnosis that he was in a moderate stage of Alzheimer’s, it is at least a starting point. I had one client who was shocked that their mom got a 12 out of 30 on the test. They had not noticed any cognitive issues at all.
- If you are still concerned, push for the NPE testing, especially if you are noticing problems early on. That may give some insight into potential medications, as well as a better idea of what might be in your future, which will help you better plan next steps.
Once all other possible causes of memory loss or cognitive decline are ruled out (like a medication or other illness causing delirium), most dementias are progressive and do not get better over time or self-resolve. The earlier you can get a diagnosis, the more options will be available to everyone, and the more control dad will have in the coming years.
If all else fails, or dad refuses to visit the doctor, you may need to wait until there is a critical incident to get him tested. Unfortunately, you have a lot of company. It might be a good idea to check your area for a local dementia support group. You may find a local memory-care organization that can offer some help or you might check with The Alzheimer’s Association for a support group near you.