The Importance of Research Participation

A common goal for anyone reading this is the eventual cure and eradication of Alzheimer’s disease.  Every 69 seconds another individual develops this devastating brain disease.  Currently, over 5.4 million Americans have Alzheimer’s disease and, because of the aging Baby Boomer generation (turning age 60 at a rate of 330 every hour!), this number is expected to be over 7 million by 2030 and 16 million by 2050. One in eight persons age 65 and older currently has Alzheimer’s disease and almost 1 in 2 (or 50 percent) age 85 and older has it.  And, it doesn’t just affect those in their 60’s or beyond; there is a growing number of individuals in their 50’s or sometimes younger who become symptomatic from what is termed Younger Onset Alzheimer’s disease.  Alzheimer’s disease is the 6th leading cause of death in the country and the only cause of death among the top 10 in the US that cannot be prevented, cured, or even slowed. The national cost of caring for people with Alzheimer’s disease is about $183 billion every year (i.e., ~25% of the Stimulus Bill).  And, of course, the disease does not just affect the patient; it dramatically affects family members, friends, and other loved ones.  It is estimated that there are 15 million dementia caregivers in the US providing 17 billion hours of unpaid care valued at $202 billion.  Caregivers not only suffer emotionally but also physically from stress-associated disorders and illness. Because of the toll of caregiving on their own health, dementia caregivers had $7.9 billion in additional health care costs in 2010. The financial toll doesn’t compare to the enormous personal impact on caregivers from the stress, sadness, and lost dreams. In short, we are in the midst of an Alzheimer’s crisis that is growing in size and scope. The single most important thing anyone can do to have an impact on this Alzheimer’s disease crisis is to volunteer to participate in research.

There have been amazing strides in the scientific community over the past 5-10 years with regard to understanding the cause of Alzheimer’s disease, developing more accurate methods of diagnosing it during life, and creating new treatments that may actually modify the disease course.  These advances have been possible due to the devotion and talent of the scientists, financial support for researchers (from the National Institute on Aging and other federally-funded agencies, private foundations such as the Alzheimer’s Association, individual philanthropists, and elsewhere), and the commitment and vision from industry (e.g., pharmaceutical companies, neuroimaging companies).  The technological advances in our ability to diagnose and treat the disease all start in the basic science laboratories where it typically takes many years of trial and error and numerous experiments to develop a procedure or medicine that can finally be studied in humans.  And that is now where we need everyone’s help.  To get new treatments or devices from the early stages of development in laboratories and in animals to FDA approval for use in human beings is a long and tremendously costly journey, with many “failures” along the way.  Believe it or not, one of the major costs of this journey, both in terms of money and time, involves recruitment of individuals to participate in the research. It always seems to be a surprise to people to hear about this. People seem to think that research centers are full of volunteer research participants and, therefore, there is no need for them to participate. This could not be further from the truth.  Even major medical centers with well-known Alzheimer’s disease research programs such as the BU ADC are in tremendous need for research participants.

What type of research is available?  There are many, many ways to get involved.  There are clinical trials to test new treatments for those with AD, and now there are actually clinical trials for mild cognitive impairment [MCI] or prodromal Alzheimer’s disease.  Soon there will be clinical trials for people who don’t yet have any symptoms but who show evidence (on special spinal fluid tests or PET scans) of having the brain changes of early Alzheimer’s disease.  However, there are also some studies that just focus on the caregiver.  Some studies involve only a one- or two-time visit to help develop new methods of diagnosing Alzheimer’s disease at even the pre-symptomatic stage of the disease.  Some studies address issues of everyday life and independent functioning.  Our “flagship” study, the Health Outreach Program for the Elderly (HOPE) involves an annual ½ day evaluation and is open to cognitively healthy individuals, as well as those with MCI or dementia, and provides participants and their doctors with feedback about how they are doing, as well as facilitates the participant’s involvement in other research studies.  And, we have just begun a new project associated with the HOPE study in which we are specifically recruiting individuals who played contact sports (e.g., football, hockey, boxing) in high school and college.  In other words, there is likely a research study to meet the interests of most people.  And, if there is not an appropriate study available today, it is likely that a new study will become available in a month or two that may be appropriate.

We often hear that many people are hesitant to come to the city and to a large medical center for research participation, often because of discomfort driving in city traffic or because of distance and cost.  However, many research studies at the BU ADC provide transportation for participants and study partners at no cost.  In addition, for some studies, like the HOPE study, participants can be seen at our satellite site in Bedford, MA or at the Boston Center for Memory in Chestnut Hill.  In other words, travel issues or concerns should never be the deterrent for participation.

Participation in research is not merely an altruistic contribution to the scientific community’s critical work to eradicate Alzheimer’s disease, it also can provide important positive benefits to the participant.  These benefits include: a sense of empowerment by taking an active role in one’s own health care; a feeling of satisfaction that one is doing something to improve the health and well-being of the next and future generations; the potential of positive treatment outcomes with a new investigational drug other intervention; and a decreased sense of alienation and solitude by interacting with research staff who truly understand the disease and its toll on the patient, the caregiver, and family members. And, research participation fulfills that most important need for everyone touched by the disease: a sense of HOPE.  In fact, participating in research can almost be seen as a “treatment” in and of itself, in that the potential benefits described above can result in improved quality of life for the patient and caregiver alike.

Believe it or not, just ONE new research volunteer makes a tremendous difference in our mission.  A site like the BU ADC does not need hundreds of new research participants.  But every single new volunteer matters and matters a great deal.  In order for our center, and all other research centers, to make strides in our goal of quickly and cost-effectively developing successful treatments for Alzheimer’s disease we need your help.  Please think about participating in research if you or your loved one has Alzheimer’s disease or MCI. And, whether or not research participation is the right thing for you, please spread the word to make sure others affected by the disease know how important it is to participate in research. We need your help.

A version of this post appeared in the Fall 2011 Edition of the BU Alzheimer’s Disease Center Newsletter.