Posts Tagged diagnosis

Our Story to Diagnosis on the Alzheimer’s and Other Dementia Roller Coaster

Hello, readers! I am excited to share a post with you that was written by a guest contributor. This caregiver’s journey toward getting a diagnosis for her husband was quite the roller coaster and took many twists and turns. Please read on to learn more about her and her spouse’s experience, and her advice for other caregivers. 

diagnosis

It all began in August of 2016, when after answering the same question for the fifth time in as many days to my husband of 26 years I decided to keep track of things I thought might not be normal. In mid-October I sat my husband down and told him I was going to go to with him to his annual check-up in November. He asked “Why?”.  I simply stated that I had noticed some things that concerned me about his cognitive state. He looked puzzled but agreed.

On November 22, 2016, with a little over two pages of notes and the Alzheimer’s Association’s Preparing for Your Doctor’s Visit sheet in hand, we were ready for our visit.  Dr. H. came in after reviewing the documents, sat down across from us, and said he would like to do some testing. Dr. H. administered a mental status exam, and unfortunately, the test results indicated that my husband was cognitively impaired. With a series of blood tests and a CT scan scheduled to take place before our next appointment in December, we left the doctor’s office with our heads swimming!  I asked my husband, through tears, if he was mad at me. I told him it was ok to be mad at me.  This is not what I wanted, but I couldn’t stand by with my head in the sand and pretend that nothing was wrong!

During this time, I was watching my husband go to work and come home with nothing left to give because he was trying so hard to keep it together at work. I decided that we needed some advice so I called the Alzheimer’s Association Helpline on a snow day off from school. They helped to talk me through the situation and even talked to my husband

As roller coasters do, ours was about to take a plunge down a steep hill!  At our neurology appointment in April, we were wretched about the tracks as Dr. R. told us he feels certain that Jack does NOT have Alzheimer’s but another form of dementia, possibly Frontotemporal Dementia (FTD). Dr. R. explained that my husband’s behavioral changes and his age were indicative of FTD.

One of the hardest things about dementia and especially the one we may be facing is:

  • That family and friends don’t understand he looks healthy and can hide it well for short periods of time.
  • They don’t see this man sobbing because he’s afraid he’s going to forget you and he does not want to be alone going through this.
  • They don’t see the fear in his eyes when he can’t figure out how to turn the shower off.
  • They don’t see the agitation that he can’t explain.
  • They don’t see how much you just want your old life back.
  • They don’t see that you will go to the ends of the earth for this man to keep him safe and at home with you.
  • They don’t understand how isolating it is for us both.

I know that one day this roller coaster ride will be over but for now it’s the ride we’re on. And it’s definitely not one to be on alone!  So friends, if you are on a similar roller coaster ride, pick up that phone and call for help!  You are not alone! Call the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for support.

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Amyloid PET Imaging and Other Diagnostic Tools used for Alzheimer’s Disease

Ever thought about how physicians arrive at a diagnosis of Alzheimer’s disease or other dementias?

beaker

Finding Alzheimer’s disease (AD) is often a game of ruling out other causes — are the memory problems due to AD or is it something else? Is it caused by depression, vitamin deficiency, stress, sleep disturbances, infection, etc., etc.? Or are the memory problems in fact being caused by Alzheimer’s disease? Unfortunately there is no pass/fail test that will tell us immediately whether or not the person has a diagnosis. Because of the uncertainty with diagnosis, even experienced physicians can make mistakes and mis-diagnosis is not unheard of.

Comprehensive Diagnosis

  • Subjective complaints
  • Cognitive Testing200400104-001
  • Medical History
  • Medical Tests (i.e. blood work and brain imaging)

Rule out

  • Disturbed sleep
  • Emotional disorders
  • Metabolic disorders
  • Eye and ear impairments
  • Nutritional deficiency
  • Tumors
  • Infections
  • Alcohol, drugs, or medication interactions

It used to be that brain autopsy was the only way to receive a definitive diagnosis of Alzheimer’s disease, but with improved testing this is no longer the case. Experienced clinicians have a 95% accuracy rate in diagnosis. Furthermore, physicians can now administer tests that measure specific biomarkers in the brain that help them to determine a diagnosis.

The formation of plaques and tangles in the brain are the two hallmarks of Alzheimer’s disease (AD). Plagues are composed of a protein, beta-amyloid, that abnormally clumps together in AD. Many nerve cells, also called neurons, die as the damage of AD spreads. Dead and dying nerve cells contain tangles, which are made up of a protein called tau. The tangles destroy a vital cell transport system in the brain.

Advances in research have produced certain diagnostic tools that measure levels of tau and beta-amyloid. For instance a clinician may analyze a patient’s cerebrospinal fluid (CSF) to look for these important biomarkers. CSF is a clear fluid that bathes and cushions the brain and spinal cord. Adults have about 1 pint of CSF, which physicians can sample through a minimally invasive procedure called a lumbar puncture, or spinal tap. Research suggests that Alzheimer’s disease in its earliest stages may cause changes in CSF.

Beta-amyloid is under significant scientific scrutiny, and amyloid-plaque formations can be found in all patients with AD. Progress in Alzheimer’s disease research and imaging has made it possible to detect beta-amyloid in the human brain using radioactive tracers and positron emission tomography (PET). See the picture of a PET scan below.

pet scan

Amyloid PET Imaging

Despite these noteworthy advances, bear in mind that spinal taps and PET scans are not a definitive diagnosis! They are simply tools designed to increase the clinical certainty of the physician’s conclusion. Also note, that these tests are often expensive and not covered by most health insurances. Furthermore, amyloid imaging is usually only conducted in limited situations when the patient’s symptoms are atypical (e.g. young age of disease onset, symptoms do not satisfy criteria for AD, etc.).

Learn more about the steps involved in a diagnosis here, or call our 24/7 Harry L. Nelson Helpline to speak to a live representative.

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