Common Questions About Participating in Alzheimer’s and Related Dementias Research

 

How Can I Find Out About Alzheimer’s Trials and Studies?

Check the resources below:

  • Ask your doctor, who may know about local research studies that may be right for you.
  • Sign up for a registry or a matching service to be invited to participate in studies or trials when they are available in your area.
  • Contact Alzheimer’s research centers or memory or neurology clinics in your community. They may be conducting trials.
  • Visit the Alzheimer’s and related Dementias Education and Referral (ADEAR) Center clinical trials finder.
  • Look for announcements in newspapers and other media.
  • Search www.clinicaltrials.gov.

Why Would I Participate in a Clinical Trial?

There are many reasons why you might choose to join an Alzheimer’s or dementia clinical trial. You may want to:

  • Help others, including future family members, who may be at risk for Alzheimer’s disease or a related dementia
  • Receive regular monitoring by medical professionals
  • Learn about Alzheimer’s and your health
  • Test new treatments that might work better than those currently available
  • Get information about support groups and resources

What Else Should I Consider?

Consider both benefits and risks when deciding whether to volunteer for a clinical trial.

While there are benefits to participating in a clinical trial or study, there are some risks and other issues to consider as well.

Risk. Researchers make every effort to ensure participants’ safety. But, all clinical trials have some risk. Before joining a clinical trial, the research team will explain what you can expect, including possible side effects or other risks. That way, you can make an informed decision about joining the trial.

Expectations and motivations. Single clinical trials and studies generally do not have miraculous results, and participants may not benefit directly. With a complex disease like Alzheimer’s, it is unlikely that one drug will cure or prevent the disease.

Uncertainty. Some people are concerned that they are not permitted to know whether they are getting the experimental treatment or a placebo (inactive treatment), or may not know the results right away. Open communication with study staff can help you understand why the study is set up this way and what you can expect.

Time commitment and location. Clinical trials and studies last days to years. They usually require multiple visits to study sites, such as private research facilities, teaching hospitals, Alzheimer’s research centers, or doctors’ offices. Some studies pay participants a fee and/or reimburse travel expenses.

Study partner requirement. Many Alzheimer’s trials require a caregiver or family member who has regular contact with the person to accompany the participant to study appointments. This study partner can give insight into changes in the person over time.

What Happens When a Person Joins a Clinical Trial or Study?

Once you identify a trial or study you are interested in, contact the study site or coordinator. You can usually find this contact information in the description of the study, or you can contact the ADEAR Center. Study staff will ask a few questions on the phone to determine if you meet basic qualifications for the study. If so, they will invite you to come to the study site. If you do not meet the criteria for the study, don’t give up! You may qualify for a future study.

What Is Informed Consent?

It is important to learn as much as possible about a study or trial to help you decide if you would like to participate. Staff members at the research center can explain the study in detail, describe possible risks and benefits, and clarify your rights as a participant. You and your family should ask questions and gather information until you understand it fully.

After the research is explained and you decide to participate, you will be asked to sign an informed consent form, which states that you understand and agree to participate. This document is not a contract. You are free to withdraw from the study at any time if you change your mind or your health status changes.

Researchers must consider whether the person with Alzheimer’s disease or another dementia is able to understand and consent to participate in research. If the person cannot provide informed consent because of problems with memory and thinking, an authorized legal representative, or proxy (usually a family member), may give permission for the person to participate, particularly if the person’s durable power of attorney gives the proxy that authority. If possible, the person with Alzheimer’s should also agree to participate.

How Do Researchers Decide Who Will Participate?

Researchers carefully screen all volunteers to make sure they meet a study’s criteria.

After you consent, you will be screened by clinical staff to see if you meet the criteria to participate in the trial or if anything would exclude you. The screening may involve cognitive and physical tests.

Inclusion criteria for a trial might include age, stage of dementia, gender, genetic profile, family history, and whether or not you have a study partner who can accompany you to future visits. Exclusion criteria might include factors such as specific health conditions or medications that could interfere with the treatment being tested.

Many volunteers must be screened to find enough people for a study. Generally, you can participate in only one trial or study at a time. Different trials have different criteria, so being excluded from one trial does not necessarily mean exclusion from another.

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Adipose-derived stem cell treatment for osteoarthritic knees

Jay Smith, M.D., vice chair of Physical Medicine and Rehabilitation at Mayo Clinic describes a clinical trial to evaluate the safety and efficacy of adipose-derived mesenchymal stromal cell injections as a treatment for patients with osteoarthritic knees.

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An Ambitious Research Plan to Help Solve the Opioid Crisis

 

Word cloud of NIH HEAL initiative

In spring 2018, Congress added an additional $500 million to the NIH budget to invest in science to find solutions to the opioid crisis. The Helping to End Addiction Long-term (HEAL) initiative is being kicked off today with the announcement of several bold projects across NIH, focused on two main areas: improving opioid addiction treatments and enhancing pain management to prevent addiction and overdose. The funding that NIDA is receiving will go toward the goal of addressing addiction in new ways and better delivering existing forms of care to populations that need it.

Developing new addiction treatments and overdose-reversal tools is one of the major projects we will be funding. Three medications are currently FDA-approved to treat opioid addiction, one medication (lofexidine) has just been approved to treat physical symptoms of opioid withdrawal, and naloxone is available in both injectable and intranasal formulations to reverse overdose. But a wider range of options is needed in all three areas. These may involve not only new formulations of existing drugs (e.g., longer-acting depot formulations of opioid agonists or longer-acting naloxone formulations that are more suitable to reverse fentanyl overdoses) but also compounds that target different receptor systems or immunotherapies to treat symptoms of withdrawal and craving in addition to the progression of opioid use disorders. The Focused OUD Medications Development Research Project will consist of a series of high-impact studies that will ideally lead to about 15 Investigational New Drugs (INDs), which would then produce around 5 New Drug Applications (NDAs) submitted to the Food and Drug Administration (FDA).

Much research already points to the benefits of increasing the provision of OUD treatment with justice-involved populations, so this is another area that will receive HEAL funds. The Justice Community Opioid Innovation Network will create a network of researchers who can rapidly conduct studies aimed at improving access to high-quality, evidence-based addiction treatment in justice settings. It will involve implementing a national survey of addiction treatment delivery services in local and state justice systems; studying the effectiveness and adoption of medications, interventions, and technologies in those settings; and finding ways to use existing data sources as well as developing new research methods to ensure that interventions have the maximum impact.

The National Drug Abuse Treatment Clinical Trials Network (CTN) facilitates collaboration between NIDA, research scientists at universities, and treatment providers in the community with the aim of developing, testing, and implementing addiction treatments. As part of the HEAL initiative, the CTN Opioid Research Enhancement Project will greatly expand the CTN’s capacity to conduct trials by adding new sites and new investigators. The funds will also enable the expansion of existing studies and facilitate developing and implementing new studies to improve identification of opioid misuse and OUD and engagement and retention of patients in treatment in a variety of general medical settings, including: primary care, emergency departments, obstetrics/gynecology, and pediatrics.

A great tragedy of the opioid crisis is that so many effective tools already exist but are not being deployed effectively in communities that need them. Only a fraction of people with OUD receive any treatment, and of those, less than half receive the medications that are universally acknowledged to be the standard of care, or they only receive medications for too short a duration. As part of its HEAL efforts, NIDA will launch a multisite implementation research study called the HEALing Communities Study, in partnership with the Substance Abuse and Mental Health Services Administration (SAMHSA). The HEALing Communities Study will support research in up to three communities highly affected by the opioid crisis, to evaluate how the implementation of an integrated set of evidence-based interventions within healthcare, behavioral health, justice systems, and community organizations can work to decrease opioid overdoses and to prevent and treat OUD. Lessons learned from this study will yield best practices that can then be taken and applied to other communities across the nation.

The HEAL Initiative is a tremendous opportunity to focus taxpayer dollars effectively where they are needed the most: in applying science to find solutions to the worst drug crisis our country has ever seen.

See also:

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Slowly Silenced:  How Alzheimer’s Quiets Beautiful Minds

Most have been touched by the devastating effects of Alzheimer’s. We have lost family and friends to the disease that snuffs the light in bright minds.  For us, the first to lose their fight was a friend’s mom, way too young with a rapid onset.  Most recently, it was my wife’s dad, who went from being a Gifted and passionate performer to a man locked in motionless silence for years.  When he missed calling on her birthday, my wife knew his humorous attempts at covering his forgetfulness hid something deeper.  I knew when he no longer remembered the words to his own gold Records as he played at our daughter’s graduation party.

Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.  More than 5 million Americans are living with Alzheimer’s disease and over 15 million Americans are providing unpaid care and support.  Worldwide, 50 million people suffer from Alzheimer’s or other dementia.

These numbers are expected to triple by 2050 without significant breakthroughs.  And, while death from heart disease has decreased in the last few years, death from Alzheimer’s has increased by 123%.  It is the only Top 10 leading cause of death in the United States without a cure, prevention or even a truly promising way to slow progress.

ALZHEIMER’S AND DEMENTIA BASICS

Alzheimer’s is the most common form of dementia – a general term for memory loss and other decline in intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease accounts for 60 to 80 percent of dementia cases.  It is the sixth leading cause of death in the US.

Alzheimer’s is not a normal part of aging, although the greatest known risk factor is increasing age, and the majority of people with Alzheimer’s are 65 and older. But Alzheimer’s is not just a disease of old age. Up to 5 percent of people with the disease have early onset Alzheimer’s (also known as younger-onset), which often appears when someone is in their 40s or 50s.

Alzheimer’s worsens over time. Alzheimer’s is a progressive disease, where dementia symptoms gradually worsen over a number of years. In its initial stages, memory loss is mild, but with late-stage Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment. Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from four to 20 years, depending on age and other health conditions.

Alzheimer’s has no current cure, but treatments for symptoms are available and research continues. Although current Alzheimer’s treatments cannot stop Alzheimer’s from progressing, they can temporarily slow the worsening of dementia symptoms and improve quality of life for those with Alzheimer’s and their caregivers. Today, there is a worldwide effort under way to find better ways to treat the disease, delay its onset, and prevent it from developing.

SYMPTOMS OF ALZHEIMER’S

The most common early symptom of Alzheimer’s is difficulty remembering newly learned information.

Just like the rest of our bodies, our brains change as we age. Most of us eventually notice some slowed thinking and occasional problems with remembering certain things. However, serious memory loss, confusion and other major changes in the way our minds work may be a sign that brain cells are failing.

The most common early symptom of Alzheimer’s is difficulty remembering newly learned information because Alzheimer’s changes typically begin in the part of the brain that affects learning. As Alzheimer’s advances through the brain it leads to increasingly severe symptoms, including disorientation, mood and behavior changes; deepening confusion about events, time and place; unfounded suspicions about family, friends and professional caregivers; more serious memory loss and behavior changes; and difficulty speaking, swallowing and walking.

10 WARNING SIGNS OF ALZHEIMER’S

Memory loss that disrupts daily life may be a symptom of Alzheimer’s or another dementia. Below are 10 warning signs and symptoms. Every individual may experience one or more of these signs in different degrees. If you notice any of them, please see a doctor.

MEMORY LOSS THAT DISRUPTS DAILY LIFE

One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over, increasingly needing to rely on memory aids (e.g. reminder notes or electronic devices) or family members for things they used to handle on their own.

A Typical Age-Related Change

Sometimes forgetting names or appointments but remembering them later.

 CHALLENGES IN PLANNING OR SOLVING PROBLEMS

Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.

A Typical Age-Related Change

Making occasional errors when balancing a checkbook.

DIFFICULTY COMPLETING FAMILIAR TASKS AT HOME, AT WORK OR AT LEISURE

People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.

A Typical Age-Related Change

Occasionally needing help to use the settings on a microwave or to record a television show.

CONFUSION WITH TIME OR PLACE

People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

A Typical Age-Related Change

Getting confused about the day of the week but figuring it out later.

TROUBLE UNDERSTANDING VISUAL IMAGES AND SPATIAL RELATIONSHIPS

For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast, which may cause problems with driving.

A Typical Age-Related Change

Vision changes related to cataracts.

NEW PROBLEMS WITH WORDS IN SPEAKING OR WRITING

People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”).

A Typical Age-Related Change

Sometimes having trouble finding the right word.

 MISPLACING THINGS AND LOSING THE ABILITY TO RETRACE STEPS

A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.

A Typical Age-Related Change

Misplacing things from time to time and retracing steps to find them.

DECREASED OR POOR JUDGMENT

People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.

A Typical Age-Related Change

Making an unwise decision once in a while.

WITHDRAWAL FROM WORK OR SOCIAL ACTIVITIES

A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.

A Typical Age-Related Change

Sometimes feeling weary of work, family and social obligations.

CHANGES IN MOOD AND PERSONALITY

The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.

A Typical Age-Related Change

Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

If you notice any of the 10 Warning Signs of Alzheimer’s in yourself or someone you know, don’t ignore them. Schedule an appointment with your doctor.


RESEARCH AND PROGRESS

Today, Alzheimer’s is at the forefront of biomedical research.  Researchers are working to uncover as many aspects of Alzheimer’s disease and related dementias as possible. Ninety percent of what we know about Alzheimer’s has been discovered in the last 15 years. Some of the most remarkable progress has shed light on how Alzheimer’s affects the brain. The hope is this better understanding will lead to new treatments.

A worldwide quest is under way to find new treatments to stop, slow or even prevent Alzheimer’s. Because new drugs take years to produce from concept to market—and because drugs that seem promising in early-stage studies may not work as hoped in large-scale trials—it is critical that Alzheimer’s and related dementias research continue to accelerate. To ensure that the effort to find better treatments receives the focus it deserves, the Alzheimer’s Association funds researchers looking at new treatment strategies and advocates for more federal funding of Alzheimer’s research.

Currently, there are five FDA-approved Alzheimer’s drugs that treat the symptoms of Alzheimer’s, but these medications do not treat the underlying causes of Alzheimer’s. In contrast, many of the new drugs in development aim to modify the disease process itself, by impacting one or more of the many wide-ranging brain changes that Alzheimer’s causes. These changes offer potential “targets” for new drugs to stop or slow the progress of the disease.

Many researchers believe successful treatment will eventually involve a “cocktail” of medications aimed at several targets, similar to current state-of-the-art treatments for many cancers and AIDS.

WITH EARLY DETECTION, YOU CAN:

  • Get the maximum benefit from available treatments
  • Have more time to plan for the future
  • Participate in building the right care team and social support network
  • Locate care and support services for you and your loved ones

People with memory loss or other possible signs of Alzheimer’s may find it hard to recognize they have a problem. Signs of dementia may be more obvious to family members or friends. Anyone experiencing dementia-like symptoms should see a doctor as soon as possible. Early diagnosis and intervention methods are improving dramatically, and treatment options and sources of support can improve quality of life.

WHEN YOU SEE YOUR DOCTOR

If you need assistance finding a doctor with experience evaluating memory problems, your local Alzheimer’s Association chapter can help. Your doctor will evaluate your overall health and identify any conditions that could affect how well your mind is working. They may refer you to a specialist such as a:

  • Neurologist – specializes in diseases of the brain and nervous system
  • Psychiatrist – specializes in disorders that affect mood or the way the mind works
  • Psychologist – has special training in testing memory and other mental functions
  • Geriatrician – specializes in the care of older adults and Alzheimer’s disease

Everyday, there are physicians in the HealthLynked system ready to care for Alzheimer patients and support the caregivers who offer so much to help them live the best lives possible.  If someone you love is showing signs of memory loss beyond what might be considered normal for their age, go to HealthLynked.com to connect and collaborate with any number of specialists at the ready.

 

Ready to get Lynked and get help?  Go to HealthLynked.com today to register for free!

Sources:

ALZ.org

NYTimes.com

 

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