It’s Alzheimer’s Awareness Month, and today we’re getting an inside look at what it’s like to work in the Alzheimer’s field.
In this Q&A, we chat with Claire Day, the Vice President of Constituent Services for the Alzheimer’s Association. Founded in 1980, the Alzheimer’s Association is an international organization with over 75 local chapters.
Claire tells us what inspires her to be an advocate for those living with Alzheimer’s disease, and talks about promising new research in the field.
Q: What is your role in the Alzheimer’s Association and how long have you worked with them?
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A: I’m the Vice President Constituent Services. I oversee our clinical program and services team, who are responsible for early stage services, support groups, our 24/7 helpline, safety services, care consultation, diversity outreach and education. All things clinical and service oriented.
I started working as an employee for the Chapter in 2001, but have been a volunteer since 1994, first as a support group facilitator, then on the walk committee.
Q: How did you get involved in the Alzheimer’s and dementia field?
A: After college, my first job was a social worker in a nursing home in Central Pennsylvania. Our building developed a dementia unit while I was there, transitioning a portion of a unit to become a specialized program, which in the early 90’s, was not common. I got to see from the ground up the difference it made to residents to have specialized dementia care – staff who were trained, and specialized activities and dining programs. I’ve always said, you can’t just lock a door and call it a dementia program, you have to put specific programming and design elements into the unit to maximize benefits for staff and families.
I really found my niche in working in these units, and the more I got involved with the Alzheimer’s Association as a volunteer, the more I wanted to advocate for change in the dementia field. Now I get to do that every day.
Q: What’s the buzz about right now in the Alzheimer’s research field?
A: The Alzheimer’s research field has a tremendous amount of momentum right now, despite recent setbacks from Phase III trials earlier this year. What’s encouraging in research is the community working together with more synergy than before. Last year, with the passing of the National Alzheimer’s Project Act (NAPA), the Alzheimer’s research community made it clear that we’re all in this for the same vision. The National Alzheimer’s Project Act created a coordinated national plan, which was released this year, to overcome the Alzheimer’s crisis and will ensure the coordination and evaluation of all national efforts in Alzheimer’s research, clinical care, institutional, and home- and community-based programs and their outcomes. This was our organization’s largest advocacy victory and will create not only better services for individuals with the disease, but immediately released additional funding for NIH/NIA research, some of which is happening right here in the Delaware Valley.
As for research updates, in October it was announced that three drugs have been chosen for testing by the Dominantly Inherited Alzheimer Network (DIAN) – Trials Unit for their potential to prevent Alzheimer’s. Clinical trials of these drugs — gantenerumab, solanezumab and a beta-secretase inhibitor — are expected to begin in early 2013.
Q: November is Alzheimer’s Awareness Month. How does this event fit into your organization’s mission?
A: Originally enacted by President Reagan in 1983, Alzheimer’s Awareness Month is designed to increase awareness and acknowledge the caregivers living with Alzheimer’s disease. Here at the Chapter, we will be holding educational events to support our caregivers, including our annual Delaware Conference, held specifically in November in honor of the month. In addition, our largest advocacy and awareness event, the Philadelphia Walk to End Alzheimer’s, will be held on November 17th. These programs, as well as the awareness month, remind our organization of what we do to support those in our community on a daily basis.
Q: What special events is your organization holding to increase awareness of Alzheimer’s disease, improve quality of care, and support research to find a cure?
A: Our two largest advocacy events are our Walk to End Alzheimer’s and our annual Day on the Hill. Every fall, throughout the community, we hold 6 Walks in the Delaware Valley. The Walks are also our largest fundraising efforts that help support programs and research, but in addition to the fundraising, the Walks create a greater awareness of the disease and our organization. At the Walks we recruit thousands of advocates. These advocates participate in programs throughout the year, but our biggest event is our annual Day on the Hill. Held each spring, we send bus loads of advocates to Washington DC to spend the day on the Hill.
Q: AD is a very complex illness. What are the 2-3 most significant points of information you hope to convey to those adults with AD and their caregivers?
A: Alzheimer’s disease is NOT a normal part of aging. It is imperative that Alzheimer’s disease is treated like any other medical condition and that the symptoms are not overlooked. Communication and education is the key to understanding and caring for a person with Alzheimer’s disease.
Don’t be afraid to ask for help. Call our 24/7 Helpline, 800.272.3900 to learn more, get involved, join a support group, get access to safety services and more. Day or night this number is a lifeline for those living with the disease.
Q: If individuals would like more information from Alzheimer’s Association, where would you direct them?
A: People can visit as on our website at www.alz.org/delval or call our 24/7 Helpline at 800.272.3900.
Want to get involved? To find a Walk to End Alzheimer’s event near you and help fund a cure, click here. Concerned about a loved one who is dealing with Alzheimer’s disease? Griswold Home Care strives to make a difference in the lives of those living with Alzheimer’s, by providing compassionate, experienced in-home caregivers and improving quality of life for Alzheimer’s patients and those who love them.