Unprecedented societal changes are occurring worldwide as fertility and mortality rates decline in most countries and as populations age. These changes affect individuals, families, governments, and private-sector organizations as they seek to answer questions related to health care, housing, social security, work and retirement, caregiving, and the burden of disease and disability. – National Institute on Aging
Despite the rapid aging of America (and, indeed, the world), it is well known in research circles that research studies on and including older adults, especially individuals over the age of 75, are still behind the times.
In many cases, you may see that research includes individuals over the age of 65, but let’s be honest: 65 is on the young end of aging. More and more people are living into their late 80s, 90s, and beyond. No one would ever assume that the concerns of a 65-year-old are the same as someone in their 90s. Right? In fact, the group of individuals 85 years old and older is the fastest-growing segment of society, projected to grow three-fold from 6.7 million today to 19.0 million by 2060 (U.S. Census Bureau).
In the realm of aging-in-place (or what we now call aging-in-community), we will have to decide how to best allocate resources to community programs that help people to remain living at home – if that is their goal. It is a goal with many benefits: living at home is much cheaper than assisted living or a nursing home and often has psychological and social benefits. On the other hand, while we talk a lot about the virtues of aging-in-community, one can become “stuck-in-place”: isolation, depression, lack of ability to maintain one’s home, hospitalization, functional and/or cognitive decline can easily complicate or sabotage a goal to age-in-community if not planned appropriately.
In order to understand the dynamics of what supports aging-in-community, what works and what does not, and how resources should be allocated to support aging-in-community, we need plenty of research in this area.
Part of the challenge for research on aging is the ability to successfully recruit study participants. As an older adult, you are an extremely sought-after and valuable resource for all sorts of research projects on aging beyond aging-in-community: both clinical and non-clinical research.
If you have an interest to assist research on aging, there are several ways to get involved through reputable services, depending on what your interests are. Some research studies offer benefits for participating, many of which you can participate in from your own home. Participating in research can be a fun and interesting way to help the scientific community answer questions – or it can be a way for you to potentially address the needs of your own health or the health of a loved one. While this article is not comprehensive, if you have wondered about participating in research, there are several ways to get involved (and if you have been involved in research, feel free to leave a comment at the end of this article and share your experience – good or bad).
One thing to keep in mind, though, are your rights as a research participant. You always have the right to discontinue participating in any research study even after you have started participating, without penalty. Every research study will have an information sheet or an Informed Consent document that will detail:
- What the study is, and how long the commitment is to be a participant
- What kind of activities will take place or what kind of questions will be asked
- Your role as a participant
- How the researcher will safeguard your personal information if any is recorded
- Any benefits and/or potential harms from participating
- Your rights, including that you have the right to stop at any time with no penalty
- Any benefit or gifts that you receive upon completion of the study (if any)
- Contact information for the principal investigator of the study, and contact information to make any complaints or to learn more information
- That the study has been approved by an Internal Review Board (IRB). In fact, the information sheet or informed consent document should have an IRB stamp on the bottom of the document certifying that the study has been approved, along with the IRB contact phone number and the registration number of the study.
HOW TO FIND RESEARCH STUDIES
There are several registries that list information on clinical and non-clinical research studies and allow you to signal your willingness to be contacted (via e-mail) to potentially participate in studies – if your profile fits the study’s needs. Here, are three different registries that are reliable and well-known.
A user-friendly website where you record your information and the types of studies that interest you. In return, you receive occasional e-mails if your profile fits a study’s requirements – you pick and choose what interests you.
U.S. National Libraries of Medicine ClinicalTrials.gov: https://www.clinicaltrials.gov/
This is one of the largest and best-known national databases for registered clinical studies. Use the “Patient and Families” link at the bottom of the home page to access information on finding studies you may be interested in, or go directly to searching for studies at this link: https://www.clinicaltrials.gov/ct2/search/index
This is a subject that hits home for many of us, and this resource is specific to research on Alzheimer’s disease and related dementias. Many trials not only need individuals who are experiencing cognitive decline, but they also desperately need healthy controls. You can enter your location on the main search page to see what trials are happening nearest you.