Camilla Farrell, Development Director of the Alzheimer’s Association of Rhode Island, recently spoke with the CVS Health in Action Blog about the importance of advocating for Alzheimer’s disease.
This June, the Alzheimer’s Association was awarded a $5,000 grant from CVS Health and WPRI as part of the Community Heroes program which is dedicated to supporting nonprofit organizations in Rhode Island in the areas of health care, children’s services, social services or military support. Find out what the organization is all about and how it is using the grant money.
1. Health in Action: Tell me about the Alzheimer’s Association of Rhode Island?
Camilla Farrell: The Alzheimer's Association is a national organization with more than 70 chapters and service areas united through a common mission. Each chapter, such as ours here in RI, strives to make a positive impact in the lives of people in their local communities by increasing awareness of Alzheimer's, advancing key research and advocating for those affected by the disease.
2. HIA: Can you share your personal connection with Alzheimer’s disease and what inspired you to join the organization?
CF: When I first started at the Alzheimer’s Association in 1995, my Aunt had Alzheimer’s disease so I was familiar with the struggles of being a caregiver from my cousins’ experiences. Since then, four of my uncles and my father were diagnosed with the disease, and every day I’d hope that we could do more to find a cure. My father passed away this year from complications of the disease, and it makes my job that much more meaningful to be able to dedicate my work to a cause that hits so close to home.
3. HIA: What motivates you in your work to carry out the organization’s mission?
CF: I love what I do because it changes every day, and I know that I am helping people through my work. What I didn’t know when I applied was that my own father would later be diagnosed with Alzheimer’s, and that this cause would become even more personal for me. I’m proud to say that today we’re making great strides in raising money for Alzheimer’s research and supporting local programs for families and health professionals. There’s still no cure, so we need to continue to focus on increasing awareness and securing greater funding for the future.
4. HIA: How will the support you’re receiving from the Community Heroes grant from CVS Health and WPRI make an impact?
CF: The Community Heroes grant will be used to fund the Early Stage Social Engagement Program, which is a program that focuses on helping people living with Alzheimer’s maintain a high quality of life through memory enhancement activities, physical exercise and community interaction. Through the program, participants enjoy trying new hobbies and getting involved in community projects. One participant said, "the group has helped me learn to laugh and find joy in my everyday struggle with forgetting a name or losing my wallet."
Simultaneously, the program provides care partners time to pursue their own interests while their loved ones are engaged in enjoyable and meaningful activities. A care partner told us, “this is the only time I get for myself and knowing my wife is with newly made friends, I find comfort in knowing she is happier.” With the Community Heroes grant, we can continue to provide quality programs for early stage participants and expand our efforts to other parts of the state.
5. HIA: What are some of the common misconceptions about Alzheimer’s disease?
CF: There is a lot of confusion about the difference between dementia and Alzheimer’s disease. To put it simply, Alzheimer’s is the most common type of dementia. There is a misconception that the disease only inflicts older people, when in actuality, we’ve seen cases of Alzheimer’s under the age of 65.
6. HIA: What do you do to raise awareness of Alzheimer’s throughout Rhode Island?
CF: Our greatest achievements really stem from educating the community on Alzheimer’s disease. One of our most successful initiatives to raise community awareness has been our annual Caregivers Journey Conference. This year, we had more than 500 attendees and offered a keynote address from a well-known researcher, more than 20 workshops, an advocacy forum and a closing panel of experts.
This year for the first time, researchers in Rhode Island collaborated with the Alzheimer’s Association of Rhode Island Chapter for an Alzheimer’s Research Conference attended by more than 100 researchers.
We also host large fundraising events for the Association such as our Walk to End Alzheimer’s, The Longest Day, a Kentucky Derby Auction, and a golf tournament, as well as smaller events leading up to the Walk.
In addition, we conduct a State Day at the Rhode Island State House. This year, we pledged that people in the community would wear purple for Alzheimer’s on September 21, 2015, World Alzheimer’s Day. Senator Jack Reed even paid a visit to our Chapter office to thank us for what we do.
7. HIA: Why is it so important to raise awareness for Alzheimer’s and what have you found as the most effective way to advocate for the cause?
CF: What many people don’t understand is that Alzheimer’s is a public health crisis, with one in eight Americans aged 65 and older living with the disease and another developing Alzheimer’s every 67 seconds.
These staggering statistics show that Alzheimer’s should really matter to everyone, and that it’s a problem we simply cannot ignore.
8. HIA: Do you have inspirational stories you can share with us?
CF: We had a participant from our early stage group who was diagnosed in his early 50s. He and his wife got involved with our organization through the Early Stage Social Engagement Program because he needed something meaningful to do during the day while his wife was working. Both he and his wife became advocates, speaking out about the disease on the steps of the State House and in Senate chambers. Their dedication to the cause was truly inspiring.
We also had a former board member whose wife of more than 60 years had Alzheimer’s disease. When safety became an issue and he could no longer keep her at home, he had to relocate her to a nursing home. Soon after, he began attending a caregivers’ support group where he met a woman whose husband was also in a nursing home, and they became friends. A few years later both of their spouses had passed away, but their friendship lived on thanks to their shared experiences and connection. At the age of 90, our former board member married his friend from their support group. Now, six years later, they are happily together in an assisted living community. Alzheimer’s is a devastating disease, and it was heartwarming to see some good come out of their shared connection and heartbreak.
9. HIA: How can people get involved in the Alzheimer’s Association?
CF: We’re always looking for volunteers that can help us fulfill our mission to make a positive impact on the lives of those living with Alzheimer’s disease. We currently have a bank of more than 100 volunteers who help us throughout the year with special projects in the office and events, and their efforts are greatly appreciated. To learn more about volunteer opportunities, please call 1-800-272-3900 or visit Alz.org/ri.