The executive director of the Alzheimer’s Association, Central New York Chapter celebrates 25 years on the job. She talks about the organization and what it’s doing to help those affected by Alzheimer’s
By Mary Beth Roach
‘Each year, the Alzheimer’s Association puts out a facts and figures report — the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures — that updates the statistics. According to the report, there are 410,000 people in New York state living with Alzheimer’s disease. By 2025, we expect that to increase to 460,000.’
Cathy James is the chapter executive of the Alzheimer’s Association, Central New York Chapter. As such she oversees a staff of 20, a wide variety of programs and services over its 14-county area, and an annual budget of about $3 million to $3.5 million. She also works with the association on developing public policy initiatives. She celebrates her 25th year with the Alzheimer’s Association in June.
Q: Can you provide some statistics regarding the number of people with Alzheimer’s in the chapter’s coverage area and nationwide?
A: Nationwide there are about six million Americans that are living with Alzheimer’s disease. In New York state, it’s about 410,000. Each year, the Alzheimer’s Association puts out a facts and figures report — the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures — that updates those statistics. According to the report, there are 410,000 people in New York state living with Alzheimer’s disease. By 2025, we expect that to increase to 460,000.
Q: What services does your chapter offer for people with Alzheimer’s and their caregivers?
A: One of the services is a 24-hour helpline. We have an 800 number at 1-800-272-3900. Individuals can reach a dementia care expert around the clock. We also have a language translation line that we can connect to more than 200 different languages through that 800 number. That is really the lifeline for individuals. It’s really that first connection to the association because people can call at any particular time day or night. We also have care consultation. People can reach that through our 800 number or they can have a care consultation through one of our staff. Right now, we’re doing that remotely or by Zoom and they can bring on other family members. A Care Consultation really helps a family and an individual living with Alzheimer’s disease to put a plan of action together. We get a lot of questions from family and individuals with the disease. They’re not quite sure what they should start with first. Perhaps the individual is living by themselves, so residential and safety issues are of concern. They may have some questions about how to get an accurate and timely diagnosis or legal and financial questions.
Other services the association provides are education and training for the caregiver, as well as for the individual living with Alzheimer’s disease. There is a lot to learn about the disease, how to best to communicate, about behaviors and other changes that may be occurring as the disease progresses.
Part of that support also includes peer-facilitated support groups. It’s great for individuals with the disease and their caregivers to meet other caregivers. A lot of learning and sharing goes on in those support groups.
Individuals with Alzheimer’s disease are likely to wander at some point during their disease progression. The Medic Alert Safe Return program is an identification bracelet or necklace and a registration.
Many of these services we’re able to provide free of charge. We also do some professional training for individuals who are professional caregivers through local nursing homes and assisted living facilities, and home care agencies that are interested in having their staff be trained in dementia care practices.
Q: Are there day care programs in the area for them?
A: There are many organizations that are providing adult day care services. Most of them are provided under the auspices of a long-term care or skilled nursing facility. There are some through our 14 counties that are provided through senior centers or other community-based services. Those are very valuable for family members and individuals. That break for the caregiver is vital. Adult day services have shown to be very valuable and important for the health of an individual living with Alzheimer’s disease. It gives them purpose; it keeps them physically, mentally and socially active. All of those components are very, very important.
Q: Your organization can help families locate one of those programs?
A: Through our website, we have a community resource finder. They can log in their zip code and information about what they’re seeking and they can get what services are available. Or they can call on that 800 number.
Q: The association has a fundraiser coming up later in June called The Longest Day. How does that work?
A: It really signifies that every day for a caregiver can be the longest. We want the event to shed light on all those caregivers and individuals living with Alzheimer’s to elevate that conversation. June is also Alzheimer’s and Brain Awareness Month. You choose an activity that may be meaningful for you or maybe meaningful for someone that you’re doing this in honor or in memory of. You can register on our website — alz.org/tld. There is a $20 fee to register and includes a kit to help you organize your event.
Q: What do you see ahead in our nation’s fight against Alzheimer’s and finding a cure?
A: The research component to put an end to Alzheimer’s disease and have the first survivor is truly what our mission, our work and our vision is all about. We are the largest private funder of research that takes place. Our work in research is around key areas, such as prevention, better treatment and a cure. We are waiting word on a drug, several drugs that have been in clinical trials. One in particular is called aducanumab. If it’s approved by the FDA, and we may be getting word in the beginning of June, this will be one of the first drugs available that will actually modify the disease. The drugs that we have currently help with some of the symptoms of Alzheimer’s disease, but they don’t modify what’s happening in the brain. Not necessarily a cure, but it could help to slow the progression. Our hope would be that it would provide more time for people living with the disease to have a better quality of life.
The Alzheimer’s Association, in our public policy efforts, has been raising our voice each and every year. We are currently at just more than $3 billion of federal dollars appropriated for all Alzheimer’s and other dementia research. This year our appropriation request is another $289 million. That is what the scientists are saying is needed to continue to advance the research.
Another barrier clinical trials have is finding enough subjects to be a part of the trial. Many of these trials often times do not have enough diversity to be able to really determine the impact of Alzheimer’s disease or the treatments on individuals of color. We do know that Alzheimer’s disease affects African-Americans twice as much as whites; Hispanic, one and a half times. It’s very important that these clinical trials are recruiting subjects that are representative of our community. We’re looking at how we can bring more scientists that are reflective of these communities into the field. This field of science is extremely important to the Alzheimer’s Association, and that’s a very important part of the mission and the work that we do every single day.