Research inspiration and motivation would be gained if Alzheimer’s disease scientists were required to meet afflicted seniors, says Leslie Norins, MD, PhD, CEO of Alzheimer’s Germ Quest, Inc. He proposes “boot camp” experiential programs be established nationwide in cooperation with local Alzheimer’s respite care facilities.
“Most Alzheimer’s disease researchers and grant administrators have never personally spent even a few hours continuously with an Alzheimer’s patient. They have textbook knowledge, but little or no realistic experience with how the disease mentally disables seniors,” Dr. Norins says.
Why the lack of personal, up-close knowledge? Dr. Norins says it’s a consequence of age difference; Alzheimer’s develops in seniors, whereas researchers starting out are 25-35. “Yes, a scientist might make brief visits to a beloved grandparent with Alzheimer’s, but that hardly gives an idea of what challenges are posed 24/7 to caretakers by loved ones’ declines.”
Dr. Norins says that a volunteer day of helping the staff in a local Alzheimer’s respite care facility, or even just observing, will “provide additional emotional incentive to scientists and administrators to get this illness conquered faster.”
He formed his idea when he realized how moved he was by the hours he spent recently observing at Naples Senior Center, which provides the main respite care program in his county. “I was informed that the attendees had a wide range of backgrounds, from CEO’s to truck drivers. But Alzheimer’s had rendered them all almost childlike.
“Fortunately, a kindly staff of professionals and volunteers, led by Dr. Jaclynn Faffer, President and CEO of the Center, was taking care of each individual, providing simple activities.”
Dr. Norins says, “I was simultaneously horrified and inspired by observing these valiant but mentally sabotaged folks. I thought, ‘We simply must conquer this disease faster’. I believe an exposure similar to mine would increase motivation for every Alzheimer’s researcher and administrator across the country.”
So, what’s the next step? Dr. Norins says, “It’s time for Alzheimer’s researchers and administrators to venture out of their ivory towers. We’re going to try and convince the leading distributors of Alzheimer’s research monies, both government and non-government, to set up “boot camp” experiences for their grantees and staffs at respite care centers.”
Dr. Norins says, “Few professionals wouldn’t be stirred by such an exposure, and Alzheimer’s will be even more vigorously attacked.”
Alzheimer’s Germ Quest, Inc., is the sponsor of the $1 million challenge award for the scientist who submits persuasive proof a microbe is the root cause of Alzheimer’s disease. The company is an independent, privately held, public benefit corporation. It neither solicits nor accepts donations.
Tips for Designing a “Boot Camp” Experience for Your Scientists and Administrators
- How do I find an Alzheimer’s or memory care program in my town? Contact your local United Way agency, health department, or hospital’s Alzheimer’s unit, discharge planner, or social worker. Tell them you wish to contact a caregiving group or respite care organization that will allow your type of visitors.
- Who should I contact at the facility? Because you want to observe patients first-hand, talk to the president or executive in charge of the organization. Explain your objective is to better acquaint your researchers and administrators with the mental decline caused by Alzheimer’s, to help them more fully appreciate the value and urgency of their studies. The executive will then be able to help you design the best boot camp experience.
- How long (duration) a visit is advised? The length of your visit will depend on the program’s daily schedule. It may be sufficient to observe for the duration of one activity. For example, many memory care centers have art and music sessions that take about an hour. You should also schedule time to talk to staff and the program director to gain a better understanding of the disease’s progression.
- Should the members of our team be just observers, or should they interact with the patients the way the staff and volunteers do? Respect the center’s rules and health care guidelines. Most memory care centers do not allow any interaction (beyond observation) without background checks and training.
- After a few of us make the initial visit, how do I provide this “boot camp” learning opportunity to all our team members? During your talk with the director, explain your vision. It is probably best to start with a very small group and an hour visit. If that goes smoothly and achieves your goal for it, you may want to consider inviting the director to your facility for a more in-depth discussion regarding your observations and possibilities.
Courtesy of Dr. Jaclynn Faffer, President/CEO, Naples Senior Center.