I still get irritated when
I think about how our family doctor dismissed our concerns and delayed our
getting a diagnosis regarding Alzheimer’s for my wife. We knew as a
family that Kristie was clearly showing signs of memory loss, and our two
daughters pleaded with me to request testing when we went in for physical exams
- which I did. Our doctor, however, was fixated on Kristie getting a
colonoscopy and mammogram since there was a 5% chance of colon cancer and a 10%
risk for breast cancer. Never mind that early-onset Alzheimer's ran
in Kristie’s family (her father, grandmother, great grandmother, and so on back
5 generations), and there was a 50% chance she could inherit this
gene. I informed our doctor of the family history with Alzheimer's
and the troubling signs we were seeing. He briefly spoke with
Kristie but said he didn’t feel additional testing was needed.
When we went back to talk
about the results from Kristie’s colonoscopy and mammogram, I again requested
she be tested for memory loss. This time he asked Kristie two or three
questions, and then said he didn't think additional testing was warranted.
I didn't push it because it almost looked like I was the problem, and
that I was trying to create fear in my wife regarding Alzheimer's.
Our daughters were alarmed
when they came to visit six months later, and mad with me that I hadn't pushed
for additional testing. Finally, our youngest daughter who was 900 miles
away at college, called our doctor's office long-distance and spoke with a nurse,
explaining all the signs we were seeing and while crying, asked how her mother
could get tested. The nurse informed her that the patient had to request
the testing themselves, which really seemed strange. Nevertheless, after
our daughter called with this information, we went down to our doctor’s office
the next day and said Kristie wanted to be tested for Alzheimer's.
We were given an
appointment for a month later, where I spoke again about Kristie's memory
problems. Our doctor took the time to ask Kristie ten standard
questions. She was only able to answer half of the questions - like the
state we were in and what month it was. The doctor then said he really
didn't feel additional testing was necessary, but he would oblige us since we
were so concerned.
It took a couple months to
start cognitive testing, and then there was a delay after the first two
appointments due to a family trip and Kristie missing her appointments because
she had such an aversion to being asked so many questions which made her feel
dumb. The testing results four month later, however, indicated an obvious
problem and so a referral was made to a neurologist - for three months
later. Finally, a year and a half from when we first requested testing,
we met with a neurologist who readily diagnosed Alzheimer's based on the
results from the cognitive testing. She referred us to the Oregon Health
Science University where seven months later they conducted genetic testing and
determined my wife had the Presenilin 1 gene mutation found in early onset
familial Alzheimer's.
From my experience, it can
be extremely frustrating when a spouse or family members observe significant
memory loss in a loved one and try to get a diagnosis. Hopefully, the
medical community is becoming more aware and helpful to encourage and pursue
testing for cognitive memory decline.
As I encouraged under Warning Signs - it is very helpful to keep a journal and write down whenever you
notice a memory lapse or some confusion that indicates cognitive impairment for
someone you suspect could been experiencing memory loss. This will
allow you to see better both the progression and extent of disfunction; and
allow you to share this information with others if you proceed to get a
diagnosis.
*Note - I
highly recommend writing down and sharing events and indications of memory
problems with counselors and medical personnel in written form, rather
embarrassing and demoralizing the person having problems by trying to describe
in detail their failings and faulty memory with them listening. They
already feel stupid and recounting all their faux pas in public will only
increase their anxiety and distrust in themselves and you.
Your comments or
willingness to share related experiences below about Getting a
Diagnosis would be helpful and appreciated.
Resource Links
- WebMD – Overview of how doctors diagnose dementia.
- Alzheimer’s Association – Explanation of how Alzheimer’s is diagnosed.
- BrainGuide by UsAgainsAlzheimer's – Understanding screening, detection, and diagnosis; as well as two memory questionnaires: one to take for yourself, and another for someone you care about. Each questionnaire takes less than ten minutes to complete.
- Catch It Early - a resource for learning about Alzheimer’s disease, including the earliest clinical stage, mild cognitive impairment (MCI). Sometimes symptoms can be mistaken for normal aging, but it could be more and worsen over time, and the sooner you catch MCI due to Alzheimer’s the better.
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