Our vision is a world without Alzheimer's

Alzheimer's Association, Massachusetts/New Hampshire Chapter
Directory of Research Opportunities for People with Dementia and Their Families

Alzheimer's disease is a progressive, debilitating brain disorder affecting an estimated four million Americans. Symptoms include impaired memory, thinking and behavior. Alzheimer's is the most common type of dementia, and one of the leading causes of death among adults in the U.S.

Although there is currently no cure, the past decade has seen stunning successes in the search for a cause. Some probable causes include genetic predisposition, abnormal protein buildup in the brain, and environmental effects. With continued research, the future holds exciting possibilities for treatment.

WHAT IS A RESEARCH STUDY?

There are two types of research: basic and therapeutic. Basic research improves knowledge of the nature and cause of the disease. Therapeutic research investigates treatment and prevention strategies. Research studies are designed to find new and better ways to help patients and their families by answering specific scientific questions, and by evaluating the safety and effectiveness of medical procedures or medications.

WHY ARE RESEARCH STUDIES IMPORTANT?

We would all like people with Alzheimer' disease and other dementing illnesses to receive effective treatments. We want procedures and drugs that work, that are safe, and cost as little as possible. Through research studies, scientists are able to learn what works best, and share this knowledge with those who need it the most. Advances in medicine and science are the direct result of new ideas and approaches developed through research.

Armed with new findings about the onset and progression of Alzheimer's, scientists from disciplines such as molecular genetics, neurology and pharmacology are working together to pinpoint the true cause of this disease and to develop more effective ways to treat it.

SHOULD YOU PARTICIPATE?

There is no single reason to make this choice. And while most are satisfied with it, we should all consider such a decision very carefully.

There are a number of benefits.

Some people with dementia and their families feel that by participating now, they will improve the chances for others later. Others believe that a particular research study may lessen their symptoms or slow the disease process. Research centers have the most advanced diagnostic methods available for analyzing the degree and type of dementia. Most will provide the testing and evaluation free of cost. While research staff cannot replace the personal or family physician, research patients can receive more medical and other kinds of attention than people seen routinely for Alzheimer's disease or other dementing illnesses. And research staff has more experience with the complications which accompany these illnesses.

There are also some risks to patients, and obligations for caregivers. Some studies require frequent visits and many tests, and often require the close involvement of a caregiver. Some treatments have uncomfortable side effects, other procedures and drugs may have even more potentially serious complications. And some clinical trials require that a percentage of participants take a placebo rather than the drug being studied. Another consideration is that some studies may require that you not be taking prescribed drugs for Alzheimer's, or certain other medications.

WHAT ELSE SHOULD YOU KNOW?

By law, research of any kind involving human subjects must be approved by an independent committee made up of physicians, laypersons and others. Among other things, they must agree that:

• the study will contribute new information to the field
• the benefits outweigh the risks
• participation is entirely voluntary
• participants can drop out of any study at any point without penalty
• Informed Consent forms are understandable and fully describe the risks and benefits.

WHAT IS INFORMED CONSENT?

It is a process which insures that you-or your representative-completely understand the intent, procedures, risks and benefits of a study, and includes signing a written agreement indicating your willingness to participate. Extra protections apply to vulnerable populations, such as people with memory impairments. The Informed Consent form holds the research physician, the treatment's manufacturer, and the medical institution conducting the research to the normal standard of care for your well-being.

People with Alzheimer's disease and their families are major contributors to new research. The only way to improve treatment and decrease the care levels and costs of this disease is to study people who have it, and those who help care for them. The research community depends on volunteers to give new treatments a carefully monitored trial.