Dr. Cheryl Woodson

Guest Blog : Wisdom on Wednesday- Dr. Darby Morhardt, Northwestern University, Why Should You Participate in Dementia Research?

The Importance of Research

Scientists continue to look for answers on how to prevent or cure the major diseases.  To find these answers, scientists conduct research studies.  Discoveries from research have led to the medicines and treatments we take for granted today

Major research is underway to understand Alzheimer’s disease and related dementias and how to treat and prevent it.  There are an astounding number of persons and their caregiving families living with the disease.   Our older adult population is expanding as we live longer lives and as the baby boom generation ages resulting in mind-boggling predictions that Alzheimer’s disease will affect 13.2 to 16 million United States citizens by 2050.

If we do not find a way to help prevent, delay or slow the progression of Alzheimer’s disease, our society will be faced with the challenge of providing the social, emotional and financial infrastructure for millions of people with cognitive impairment and their families.  The effect this will have on our society is expected to be overwhelming, unless we can do something to help change the course.

Efforts to influence and circumvent this trajectory are occurring throughout the world.   In the United States, the National Alzheimer’s Project Act  (NAPA) (Public Law 111-375) passing unanimously in both the Senate and the House of Representations and in 2011 President Obama signed NAPA into law.    One goal of NAPA is to “accelerate treatment development to prevent, halt or reverse Alzheimer’s disease”.  This lofty objective is impossible to realize without volunteer research participants to move scientific knowledge forward for future generations.

 

What are the benefits of volunteering for research?

Help Others. Discoveries from scientific research participation would not occur if it were not for the altruism of volunteers who give of themselves without the expectation that the study will directly benefit them but may help their family and future generations.

Receive latest treatments.  Research participants are able to take advantage of the latest treatments.  For example, one of the most recent Alzheimer’s disease trials to be approved is the A4 study.  A4 is short for Anti-Amyloid Treatment in Asymptomatic Alzheimer’s.    This study is investigating a new drug intervention that may reduce the impact of a protein known as “amyloid” or “beta amyloid” plaques in the brain.  Scientists believe that accumulation of amyloid in the brain may play a key role in the eventual development of Alzheimer’s related memory loss.  By participating in this clinical trial, participants with amyloid in their brain will be randomized into two groups.  One group will be given the drug and another group will be given a placebo (sugar pill).  The expectation is that the drug will hopefully delay or prevent Alzheimer’s disease.

Receive regular monitoring by health professionals and learn about your condition from experts.  Another reason to consider research participation is the advantage of increased attention and additional care from the research team that often includes physicians and nurses.   The research team is extremely well versed regarding the disease they are studying and there is opportunity to interact with them providing the latest information on the disease, treatment, care and community resources.

There are many kinds of scientific studies and not all studies are clinical (drug) trials.  Some studies involve the exploration of treatments and interventions that impact the quality of life for the person with dementia and their family.  These types of studies may require the completion of surveys and participation in interviews, focus groups and/or programs that help people best cope with the changes they are experiencing.

Research participation is about hope and the promise of the future.  It is about optimism that the course of Alzheimer’s disease can be altered, thus improving the lives of all who are affected and future generations.  If you are interested in participating in research go to www.ResearchMatch.org/roar or call 1-866-321-0259.  Other sites specific to Alzheimer’s disease are The Alzheimer’s Prevention Registry: www.endALZnow.org and the Alzheimer’s Association TrialMatch:  http://trialmatch.alz.org

Darby Morhardt, PhD, LCSW  is Associate Professor and Director of Education for the Cognitive Neurology and Alzheimer’s Disease Center (CNADC), Northwestern University Feinberg School of Medicine.  Dr. Morhardt has 30 years of clinical experience with cognitively impaired individuals and their families.  She has developed educational programs, support groups and therapies focused on improving quality of life and is also responsible for organizing the Northwestern CNADC’s community/academic partnerships.

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