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Encouraging older adults to participate in research

Encouraging older adults to participate in research

Do you struggle to recruit older participants into your research? Researchers tell us that recruiting older adults—especially from underrepresented groups—is challenging, while the need for participants is great.

A survey by Research!America indicates that many older adults would be willing to participate in medical research if they were aware of studies or invited to participate, particularly by a trusted primary care provider. We recently had the chance to address the opportunities and obstacles investigators face in recruitment in a piece in the Health Affairs special issue on Alzheimer’s disease.  Some strategies for increasing participation we discussed include:

  • Bridging the gap between research and clinical care
  • Connecting participant registries
  • Accommodating participant/caregiver needs
  • Raising awareness and building trust with communities

The key to all these strategies of course is connecting participants, health care providers, and researchers at the local level.

So, here’s what we are doing at the federal level to support local efforts:

Three federal agencies—NIA, the Administration for Community Living (ACL) and the Centers for Disease Control and Prevention (CDC)—have teamed up to encourage older adults to participate in clinical research. The project, dubbed “ROAR—Recruiting Older Adults into Research,” aims to work through local aging services and public health networks to increase awareness among diverse older adults of the value of participating in research and to include older participants in all types of research. We are starting with a focus on Alzheimer’s disease research, but hope to broaden the message to include all kinds of research over time.

So far, with input on successful messages and strategies from a variety of stakeholders, we are developing materials, focusing on healthy aging and research participation, with the message that “You CAN make a difference for yourself and future generations.”

The materials will be encouraging older adults to start with an easy action step: signing up with a research matching service or registry. The ROAR project is working with ResearchMatch, an NIH-funded service that matches interested people with studies they may qualify for, and offering links to two large-scale, Alzheimer’s-specific registries, the Alzheimer’s Prevention Registry and the Alzheimer’s Association’s TrialMatch, in this first phase.

Right now, the team is reaching out to ACL’s aging network staff, CDC’s public health staff, and NIA-funded Alzheimer’s Disease Centers staff in select locations to work with us trying out the materials. Once we receive and incorporate feedback, we will begin to finalize the materials for wider use. When they become available, we hope you will try them out, give us your feedback, and let us know what else would be helpful, particularly to reach underrepresented communities.

What else is needed?

So, how can we further support your efforts to recruit older adults into research? What ideas and innovations can you add to the mix?

 

Read Next:

ROAR! HHS agencies seek to recruit older adults into research

8 Comments
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Posted by Dee on May 01, 2014 - 11:49 am
I am one of the individuals who would like to be in a study but there are few in Reno Nevada.

Posted by Nina Silverberg on May 01, 2014 - 1:24 pm
This website gives tips to help find a study http://www.nih.gov/health/clinicaltrials/findingatrial.htm. If you are specifically looking for trials related to Alzheimer's and cognitive health, visit http://www.nia.nih.gov/alzheimers/clinical-trials or call the NIA ADEAR Center for assistance at 1-800-438-4380.

Posted by Bev on May 14, 2014 - 4:05 pm
I'm looking for something close to Fort Smith,Arkansas

Posted by John McClelland on May 23, 2014 - 9:15 am
One major problem with the trials is the specific focus or target of the trial. Up until recently, the only trials were focused on Aß in some form. I reject the Aß hypothesis totally and therefore all research on Aß be it removal, creation, or anti-plaque forming. The only drug trial that I have any hope in is the one targeting Tau and I am participating in that specific trial. Over the past 7 years, I've seen trials of nicotine, testosterone supplementation, antihistamines along with other snake-oil based treatments that I believe do more harm than good. The need is for research in treatments that stand a chance of actually effecting the outcome rather than conventional dogma of Aß based treatments.

Posted by zuzu on May 29, 2014 - 3:04 am
Often family caregivers are hesitant to put Alzheimer's/dementia patients into studies due to lack of time/resources/energy for another responsibility added on to an already overwhelming caregiving schedule. Family members may feel guilty about enrolling Alz. patient in study in case side effects were to have negative effects/results. Personally I and some others are currently leery of signing up for the Alz. Registry because we aren't sure of it's potential for use beyond medical research. It's quite disturbing to know that provisions in the Affordable Care Act encourage discussions and education on End of Life planning with family members who may make decisions for dementia patients Those patients and family caregivers will have encouragement to do preplanning based on an diagnosis of early onset Alzheimer's based on the Alzheimer's Registry test results, and that information could specifically affect all medical care decisions for the rest of their lives. Should a seventy five year old woman with early onset dementia with Lewey Bodies, who recognizes no one in her family, can't eat on her won, needs a breathing assistance, can't communicate and must be fed through a tube have a full hip replacement? What about a healthy man who is athletic and in shape running 5 miles a day and has no health issues, should he have the replacement? Who decides and on what basis Who pays for the surgery and rebhab? I think this effort has a lot of public fear to overcome. I am a strong supporter of public funding for Alzheimer's treatment and in home assistance for people with Alz. and their caregivers. However, I do not believe children under 12 should take on that caregiving responsibility, and I don't believe that this registry will be used for evil and not for good, and that those people whose people whose that indicate dementia will likely be forcefully removed and separated from the public until all of the naysayers are wiped out of the earth. It's going to be a very bumpy ride and I'm glad I'm not in charge.

Posted by Nina Silverberg on May 30, 2014 - 10:18 am
Thank you for your thoughtful comments on the stresses and concerns involved in being a caregiver and making both research and medical decisions for a loved one. As to the burden of participating in research on caregivers and their loved one with Alzheimer’s, it is a decision that the family can make together. Starting a dialogue with the researchers in a study does not commit your loved one to the study and helps clarify the risks and benefits as well as the study goals. Even if you decide to join a study, you or your loved one may withdraw at any time. We hope that research will help to answer some of the important questions you raise about how to make these decisions in difficult circumstances. Researchers do take their responsibilities seriously to protect and monitor participants for any negative effect on safety and well-being. They have an obligation to keep all personal health information private and that is true in a registry, too. Some families also see participating in research as a way to give back and to contribute to the better health of current and future generations, even as the stresses and strains of care make that a challenge. If you still have questions or concerns about joining a registry or signing up for a research matching service, we suggest that you speak with a staff member. You might start with ADEAR center staff at 1-800-438-4380.

Posted by Barry on Jun 25, 2014 - 9:48 pm
I have considered joining a research study but fear that I will be losing an opportunity to avail myself of medications or treatments for the duration of the study. For example I may want to explore beginning a medication such as Aricept while it might help. While study results may be useful for society it is not clear whether I will benefit.

Posted by NIA Blog Team on Jun 26, 2014 - 11:39 am
Barry, thanks for sharing your concerns. As Dr. Silverberg describes above, you can leave a study at any time if it's not right for you. While participating in medical studies, participants get top-notch care and access to new kinds of treatment. Many people find it worthwhile. For more information, call the NIA ADEAR Center at 1-800-438-4380.