There are several reasons your patients may be interested in volunteering:
>Research participation helps others. Even when we find out that a medicine does not work, this helps. For example, we know that we need to direct our resources elsewhere.
>Participating in research may help us learn how to prevent the disease for future generations who are at risk for Alzheimer’s disease. The Wisconsin ADRC has several studies enrolling adults who have a parent affected by the disease. Our hope is to help clarify the interplay between genetics and lifestyle risk factors, so that we can possibly prevent Alzheimer's disease (AD).
>Relationship with experts. Volunteers are followed closely by leading Alzheimer’s disease researchers and clinical professionals. The staff members you will meet at a research appointment include fellowship-trained geriatricians, neurologists, coordinators with social work backgrounds, and neuropsychologists specializing in diagnosing and treating memory disorders. Having access to professionals, knowledgeable about the disease can be a great comfort to patients and families for several reasons:
- Specialists can provide consultation and targeted advice regarding treatments
- Caregivers can call upon clinicians over the course of the study and beyond to discuss important transitions in care and living situations, or behavioral changes that may come along while caring for a person with dementia
- Experts in AD can help the family interpret news stories and media reports
- Importantly, patients and families can get answers to questions that a primary care provider may not have time or expertise to address
>Research provides close medical monitoring during the course of the study. Study participants complete a number of medical evaluations, which would uncover unknown or silent conditions. For example, they may receive an MRI or EKG as part of their screening evaluations.
>Research provides access to new investigational treatments not yet on the market - at no cost. The research program conducts clinical trials with investigation new treatments that are not yet on the market. Some medications have several or serious side effects, but many are relatively low risk. For example, a trial may be conducted to evaluate the effectiveness of a re-formulation of an already-approved medication. The study medication would be provided at no cost. A recent example of one study with our program was a trial studying a new form of Aricept. This study was conducted with volunteers in our program, who took the study medication (23mg of Aricept) for 2 years. Now that the study is over, the medication was has been approved by the FDA.
>The Placebo Effect. It is well known that research participants can improve when they are enrolled in a treatment study, even when they receive the placebo. We don’t know why, but one idea is that they benefit from the close monitoring and attention given to them during the research experience. Therefore, a new medication always has to show ‘benefit over placebo’ in order to be considered a successful treatment.
>Volunteers in memory research with the ADRC can also consider brain donation at no cost to the patient or family. While anyone can undergo brain autopsy, only program participants who donate their brain to research will have the costs associated with the service waived. An autopsy report is provided to the family.
>Education about AD. Participants get first hand information about new developments in AD research via newsletters, mailings and community events hosted by the research staff. They can also be invited to various community educational programs led by the Wisconsin ADRC throughout the year.