Julie Hayes is the Content Manager at Benjamin Rose Institute on Aging.
As you search online for information on caregiving-related topics, it’s not unusual to come across references to associated research that may be underway or in development. It could be that a particular clinical trial, study or survey has sparked your interest and you’ve considered the possibility of becoming involved—either with or without your loved one. Research on diseases and conditions, as well as the caregiving experience itself, can be valuable and instructive. For example, findings may shed light on how your own journey compares with those of other caregivers and their loved ones. Study results can also keep you apprised of the latest information on disease research and caregiver support, and give you added insight into what your loved one is experiencing.
You and your loved one may want to become involved in a particular study in order to make your voices heard, relate what you’ve experienced and help improve the lives of other people who are in similar situations. But you may be reluctant because you don’t know much about these studies or how to go about participating.
What are the benefits of getting involved in studies?
Participating in research offers numerous important benefits. Participants have the opportunity to:
- Add to the body of knowledge on a disease or condition, help to bring about improved treatments or even aid in finding cures. Researching a disease or condition can lead to better understanding of its causes and how it manifests, and result in eventual treatments. Over the years, research has led to the discovery of cures for many diseases, including smallpox and polio.
- Further more effective support programs for older adults and caregivers. Cures for diseases can take time. Meanwhile, older adults need support to age well in both body and mind, and caregivers need support to deal with their numerous challenges. Studies can lead to the development of programs, and can offer insight into what works and where changes may be necessary in current programs. For instance, research into music therapy can give us more information about how it helps older adults who live with Alzheimer’s. In addition, when programs for caregivers such as the care-coaching program WeCare…Because You Do are supported by research, caregivers can have more assurance that such programs offer real benefits.
- Pinpoint areas of need. Perhaps you’re a working caregiver and you believe that more should be done by employers to help those in your position to juggle responsibilities. Perhaps your loved one has dementia and needs more support out in the community. Studies are an important way to address and bring attention to the challenges many older adults and their caregivers confront, and assist in showing where solutions are necessary.
Where can I find opportunities to become a research participant?
If you wish to participate in a research study, you may want to begin by contacting one of your loved one’s service providers—including a home care agency, social worker or senior center—or a disease-specific organization like the Alzheimer’s Association. A number of researchers work with service providers and nonprofit organizations to recruit participants who meet their criteria.
You can also find research study and clinical trial search tools online. The National Institutes of Health has a searchable database of opportunities at clinicaltrials.gov where you can search for keywords that match your situation, like “caregiver” or “heart disease.”
If you’re planning to get involved in a clinical research study with your loved one, make sure to speak beforehand with his or her doctor, and yours, as well. Certain studies could interfere with specific treatments or prescription drugs, so it’s important to make sure that you and/or your loved one are able to participate before confirming your involvement. You may also want to talk to other members of your loved one’s care team for more information on how the study might impact him or her. If a clinical trial won’t work for either of you, you may want to look into participating in survey research as an alternative. The Family Caregiver Alliance’s research listings include many survey and questionnaire-based studies conducted by both industry professionals and graduate students.
