On the September 24th edition of Connelly Law’s Southcoast Seniors Radio Magazine, heard on Providence’s radio station am790 WPRV, our guest was Kate Spinella, Director of Development at the Rhode Island Chapter of the Alzheimer’s Association. On the show, Attorney Connelly discussed multiple subjects with Kate but focused on the "Walk to End Alzheimers” scheduled for October 4, 2020, in Providence.
To begin the show, Spinella was asked about the mission and work of the Alzheimer’s Association. “We were founded in 1980 by a group of family caregivers who saw the need for an organization that would unite caregivers and provide the support needed for those facing Alzheimer's,” Spinella explained. “We also provide advocacy on multiple levels and advance research into the disease.”
Connelly asked Spinella about the signature color of purple that has become synonymous with the Alzheimers Association. "The color purple combines the calm stability of blue and the passionate color of red," Kate stated. "Purple makes the statement, loud and clear, about the Alzheimer's Association and our supporters that we are strong and will never give up in the fight against this disease."
The discussion then turned to the impact that the current coronavirus pandemic has had on the fundraising efforts of the organization. Spinella pointed out the irony in the reaction to the COVID-19 pandemic while the numbers affected by Alzheimer's and other dementias locally and worldwide could also qualify for the label "pandemic".
The Pandemic of Alzheimer's
“The number of Americans living with Alzheimer’s is growing fast. Nearly six million people ages 65 and older are living with the disease and 80% of them are over the age of 75,” said Spinella. “If this continues and we do not find any treatment or cure, in just thirty years, we expect that number to hit close to 14 million.”
The Alzheimer's Association lists a number of startling statistics on its website. Here are a few;
One in 10 people age 65 and older (10%) has Alzheimer's dementia.
Almost two-thirds of Americans with Alzheimer's are women.
Older African-Americans are about twice as likely to have Alzheimer's or other dementias as older whites.
Hispanics are about one and one-half times as likely to have Alzheimer's or other dementias as older whites.
And while we are focused on COVID-19, Alzheimer's continues to claim American lives. “This disease is the 6th leading cause of death in the United States,” Spinella continued. “Between the years of 2000 and 2018, deaths from heart disease have decreased by nearly eight percent while Alzheimer's deaths have increased a whopping 146 percent! While we have focused on the cardiovascular system and keeping that part of our body healthy, we haven't spent nearly enough time talking about brain health."
Spinella also explained the link between heart disease and Alzheimer's. "Research continues to find a strong correlation between heart health and brain functioning. Unimpeded blood flow to the brain is essential for the function and wellness of brain cells. We have known about the family history and genetic factors involved with cognitive decline, but lifestyle factors also affect this. Obesity, smoking, diabetes, high blood pressure, and high cholesterol are all risk factors for dementia."
The Walk Funds Research
In talking about genetic factors, a recent guest on Southcoast Seniors, Terry Fogerty, Outreach Coordinator for the Alzheimer's Disease and Memory Disorders Center at Rhode Island Hospital, spoke at length about genetic factors, including the APOE gene. "The gene with the greatest known effect on the risk of developing late-onset Alzheimer's disease is called apolipoprotein E (APOE)," Fogerty told Southcoast Seniors. "The APOE e4 is associated with a higher risk of Alzheimer's disease. About 25 percent of the general population inherits one copy of APOE e4. This increases their lifetime risk of developing Alzheimer's disease by a little more than two times, on average. People with APOE e4 also tend to develop Alzheimer's at a younger age."
Understanding all the factors involved in Alzheimer's can only come with research and for research to continue, fundraisers like "The Walk to End Alzheimer's" must be successful. But much has changed in 2020 as a result of the coronavirus and just how will this affect this year's event and the financial goal needed to provide funding for the work of the Alzheimer's Association to continue?
“The Walk is the Alzheimer Association’s largest fundraiser for Alzheimer’s care, support and research,” stated Spinella. “This will not be the traditional gathering due to the pandemic, but the walk will go on, and we need participants of all ages and abilities to join us in the fight against this disease.” And just what form will the walk take this year?
“Much of this will be an interactive event. It will be online, on your street, in your community, at multiple locations. The online experience is an exciting new way to participate in the walk,” said Spinella.
What will the online experience be like? According to the Alzheimer’s Association website, it will feature a multitude of ways to be a part of the action on the day of the event. They include the ability to:
Log in to the Walk Mainstage, the event’s interactive online experience. This will allow the viewer to Livestream the Opening and Promise Garden Ceremony;
Actually hold a walk in your neighborhood, on a track or on a local trail. Participants can Download the Walk to End Alzheimer’s mobile app to track their steps and hear messages of support from other participants around the country;
Visit the planted Promise Garden, which is view only, to experience your community’s reasons to end Alzheimer’s.
The Promise Garden
Spinella said that the promise garden "is the most emotional part" of the walk. The Alzheimer's Association explains that the Promise Garden is "a mission-focused experience that signifies our solidarity in the fight against the disease." And in that garden are flowers of varying colors, with each one representing the participants' connection to Alzheimer's and their reasons to end the disease.
Blue Flowers - this color represents someone with Alzheimer's or dementia;
Purple Flowers - this color represents an individual who has lost someone to the disease;
Yellow Flowers - this color represents a person who is currently supporting or caring for someone with Alzheimer's;
Orange Flowers - this color represents an individual who supports the cause and the Alzheimer's Association's vision of a world without the disease,
These were the traditional colors of the promise garden, but recently, a new color has appeared - white.
"The white flowers were introduced when researchers began to find positive developments in the possibility of slowing or even preventing the disease," Spinella stated. "As of now, Alzheimer's is the only disease with no cure, no treatments to stop, delay or prevent the disease, and sadly, no survivors. But the white flower symbolizes hope. We know that the first survivor is out there."
But to have survivors, there must be research, and Spinella told Southcoast Seniors that a very important study is underway in the Providence area that needs participants. “It’s called the POINTER Study and it is the first such study to be conducted in a large group of Americans across the United States. POINTER is an acronym derived from “PrOtect through a lifestyle INTErvention to Reduce risk.”
More About POINTER
Researchers state that lifestyle interventions focused on combining a healthy diet, physical activity, and social and intellectual challenges currently represent a promising therapeutic strategy to protect brain health. In a recently completed two-year clinical trial -- the Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability (FINGER study) -- indicated that a multidomain intervention of physical activity, nutritional guidance, cognitive training, social activities, and management of heart health risk factors helped to protect the cognitive function in healthy older adults at increased risk of cognitive decline.
The FINGER study was a breakthrough given the fact that there are no pharmacological treatment options that can rival this effect. As a result, there exists an urgent need to expand this work to test the generalizability, adaptability, and sustainability of its findings in diverse and global populations and this is where the United States' POINTER study will continue the work of the FINGER study. POINTER researchers will test whether a similar two-year intensive lifestyle intervention, adapted to American culture and delivered within the community, can protect cognitive function in older adults in the United States who are at increased risk for cognitive decline and dementia. If this is successful, the results of this study will have major implications for public policy involving the standard of clinical care and prescriptive practices for a fast-growing and vulnerable population of older adults.
“What’s so exciting about this study,” said Spinella, “is that Rhode Island is one of just five sites nationally that will participate. The Alzheimer’s Association has been the force driving this research, which we are funding with grants.”
In an article from the Providence Journal about the POINTER study, Dr. Stephen Salloway of Butler Hospital told the newspaper, "We are so excited that Rhode Island and the southern New England region has been selected as the fifth site for the landmark U.S. POINTER Trial. Rhode Island has the right size and community spirit to successfully carry out this study, and our team at Butler is looking forward to working closely with our partners at The Miriam Hospital and the Alzheimer’s Association.”
Spinella outlined who is eligible to participate in the study. “Researchers are seeking volunteers from Rhode Island and nearby areas, 60 to 79 years old, who do not have problems with memory or thinking — but who also do not regularly exercise. Volunteers will be randomly placed in one of two groups, 'a self-guided lifestyle program', or 'a more structured lifestyle program'.” Both groups, however, will be encouraged to increase physical exercise, a healthier diet, cognitive and social stimulation, and regular monitoring of heart and vascular health.
Given the coronavirus pandemic and concerns around safety, the study will follow the protocols set forth by the state Health Department and the CDC. Screening of prospective participants will be conducted by mail and telephone and those eligible will be invited to Butler Hospital to complete other procedures with special care, adhering to all safety guidelines established by Care New England, the state Health Department, and the CDC.
"This is exciting research and could be the beginning of a way to prevent the disease in some people, so you can see the importance of the walk and the funds that we raise going into research like this. It’s this money that helps fund our critical care and support services that advance research into methods of prevention and treatment and someday, a cure,” said Spinella.
So how can you be a part of this year's "Walk to End Alzheimers"? Click on the photo below and go to their website. The process is simple and you can be a part of the cure.