VOLUNTEERS HELP FIND A CURE FOR ALZHEIMERS
When an older parent is diagnosed with Alzheimer's disease families and their relative are often determined to help find a cure for this dreaded disease. One way caregivers and their can make a cure a reality is by volunteering to participate in Alzheimer's research studies.
ALZHEIMER'S FACTS & FIGURES
More than five million older Americans have been diagnosed with Alzheimer's making it the seventh leading cause of death in the United States. The number of individuals with the disease is expected to increase dramatically as the Baby Boom generation ages. Although treatments are available that manage symptoms and slow the progress of the disease a cure for Alzheimer's is still a long way off.
SEARCHING FOR CAUSES & CURES
A host of research studies are currently underway to increase knowledge about causes of Alzheimer's that will be used to identify more effective ways to diagnose the disease, develop new medications to manage symptoms or control the disease's progress, and one day - discover a cure for this devastating illness.
Volunteer subjects are an essential part of the research process. Although drug research begins in the laboratory, new drugs must be tested on human volunteers to determine if a medicine is safe and effective before it can be prescribed by physicians to their patients.
Other projects investigate how caregiving affects caregivers, what interventions will best improve the quality of life for people with Alzheimer's and their families, the value of genetic testing, the physical, psychological and emotional effects of caregiving.
IDENTIFYING ALZHEIMERS RESEARCH PROJECTS
If you think your older parent might be interested in volunteering for a research project, gather information about the project (and the researchers) and discuss these questions before you make a decision:
- Who is doing this study?
- What is the purpose of the project? What questions will it answer?
- What are the benefits to research subjects of participation?
- What tests or procedures will be required? How often will they be repeated?
- How long will the project last?
- Will there be any affects on research subjects' health?
- Will volunteers be compensated for participating in the project?
- Will participants be informed about the results of the project?
- If the project involves a new medication, are any side effects expected? If so
what are their symptoms and how will they be managed?
PROTECTING RESEARCH SUBJECTS
Federal laws state that research involving human subjects must be approved and monitored by an Institutional Review Board (IRB) to insure that risks to participants are as minimal as possible and that participants are fully informed about the project and potential risks.
For more information on clinical trials and a list of trials in your area visit www.ClinicalTrials.gov. Tell your parent's doctor that your parent is interested in participating in Alzheimer's research and ask him to inform you about new projects seeking volunteers.
VOLUNTEERS ARE ESSENTIAL FOR RESEARCH
Volunteers also test the effectiveness of non-medical treatments such as counseling, education, assistance from family and friends, community services, and support programs caregivers and people with Alzheimer's.
Once they learn about the need for research older adults diagnosed with Alzheimer's disease and their families are often eager to help find a cure for the disease or develop new, more effective treatments.
Most people who have participated in research projects and their families say that
it was a positive experience for them – even if their relative's condition didn't improve.
They looked forward to their appointments and enjoyed getting to know the research staff
who often offered tips on managing symptoms or provided informal counseling.
Participants often felt sad when the project ended and even if their condition did not improve they said they were still glad they participated.
AS A CAREGIVER
Talk to your parent about the benefits of being a research volunteer and explain that people like himself who have Alzheimer's can help researchers better understand the disease and develop new, more effective treatments or even a cure. Discuss what Alzheimer's research opportunities are available in your community and investigate them together to determine which would be most beneficial and interesting to participate in.
A version of this article appeared in the Private Health News.