Posts Tagged Alzheimer’s research

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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Clinical Trials for Alzheimer’s Research

clinical trials

Scientists have made enormous strides in understanding how Alzheimer’s disease affects the brain. Many of these insights point toward new therapies and improved ways to diagnose the disease and monitor its progression.

At any given time, dozens of studies are recruiting participants to help explore these exciting new approaches. Every clinical study contributes valuable knowledge, regardless of whether the experimental strategy works as hoped.

Without study participants, however, progress is stalled, and scientists report growing difficulty finding enough volunteers to complete these studies.

If you or a friend or family member has Alzheimer’s or another dementia — or even if you don’t — you can help advance knowledge about this illness. By participating in a clinical study, you can help new treatments, preventive strategies and diagnostic tools to become a reality.

What is a clinical study?

A clinical study is any medical research project involving human volunteers. Research into improved approaches usually begins with laboratory work or animal studies. Following early success with these methods, new strategies must demonstrate their effectiveness in the final proving ground of human testing.

What is a clinical trial?

A clinical trial is a specific type of study in which one group of volunteers gets an experimental treatment, while a similar group gets a placebo ( a look-alike “sugar pill”). Scientists evaluate the effect of the new treatment by comparing outcomes in the two groups.

Phases of clinical trials

The U.S. Food and Drug Administration (FDA), which regulates medical products and drugs, oversees a rigorous process for testing experimental treatments that is based on sequential phases. The treatments must perform well enough in each phase to progress to the next one. If a treatment performs adequately in all stages through Phase III, the FDA reviews the data and determines  whether to approve the drug for use in general medical practice.

  • Phase 1 trials, the first stage of human testing, typically enroll fewer than 100 volunteers. These studies are primarily concerned with assessing the safety of a drug and whether it has risks or side effects.
  • Phase II trials enroll up to a few hundred volunteers with the condition the drug is designed to treat. These studies provide further information about the safety of the drug and focus on determining the best dosage. Scientists also watch for signs of effectiveness, but Phase II trials are generally too small to provide clear evidence about benefit.
  • Phase III trials may enroll several hundred to thousands of volunteers, often at multiple study sites nationwide or internationally. Phase III trials provide the chief evidence for safety and effectiveness that the FDA will consider when deciding whether to approve a new drug.
  • Phase IV trials, also called post-marketing studies, are often required by the FDA after a drug is approved. The trial sponsor must monitor the health of individuals taking the drug to gain further insight into its long-term safety effectiveness and the best way to use it.

How to find a study near you

Alzheimer’s Association TrialMatch is a clinical studies matching service. TrialMatch uses information about your diagnosis, location and preferences to match a person with current clinical studies. Finding the right trial can be done over the phone or online. Once a match is found, and with your permission, a TrialMatch specialist will contact you to answer questions.

If you would like to consider participating in a clinical study, call 1-800-272-3900 or visit alz.org/trialmatch. More information about clinical studies can also be found at clinicaltrials.gov.

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