Approximately 400,000 New Yorkers are currently living with Alzheimer’s, a terminal disease that destroys memory and other mental functions. Despite the high number, many who report they experience memory loss are not talking with their health care provider about it. The Alzheimer’s association wants to change that by launching a public awareness campaign like you’ve seen for cancer or smoking. WBFO’s Nick Lippa spent a day in Albany with their Western New York chapter as they asked politicians to financially support this campaign as part of the upcoming budget.
It’s a yearly tradition. Chapters of the Alzheimer’s Association, a group that offers services to families impacted by the disease, get on buses across the state and head to Albany for a day to advocate public dollars be used for Alzheimer’s care, research, and awareness. From Buffalo, that’s a trek of 11 hours on a bus round trip.
“The most important thing that you’re going to take away from today is telling your story to the elected officials and why this disease needs to end and why we need that awareness campaign,” WNY Alzheimer’s Association Respite Services and Advocacy Director Lauren Ashburn said to volunteers. “It’s the power of you guys. You are the only reason that we get things done here okay? So please have fun, enjoy the day, and end Alz right?” she said to cheers and applause.
Ashburn is one of several team leaders making the trip. She heads a diverse group of volunteers made up of caretakers, widows, and even those suffering from the disease in its early stages.
“The more and more advocacy work that we do and the more and more people that are affected the more and more people that are talking about it, the less the stigma. And that’s the goal.”
Volunteers are broken up in to groups to target different politicians from across Western New York. Ashburn goes over with her group what the ‘ask’ is this year—a 3 million dollar public awareness campaign with a goal of getting people with the disease diagnosed earlier.
“We’ll go in to the meeting, I’ll introduce everybody. I’ll say, ‘Hey have you heard of our association? Have you heard of Alzheimer’s disease or dementia in general?’ Because you really want to make them connect with us and relate with us first,” said Ashburn. “That’s the biggest thing. Because if they’ve been impacted themselves it’s personal right? It gets to them and that’s what makes them really connect with us. If they haven’t been effected, how lucky are there? That’s when we say, ‘There’s over 400,000 New Yorkers right now living with this disease.’”
Ashburn tells them you have to be quick and concise. They only get ten to fifteen minutes to make their pitch.
“If they ask about the specific cost, I don’t want to get too much in to that to in to the meeting today, because I want to focus on the advocates and why you all are there. I don’t want to talk finances. I can do that in the district at any time and meet with them separately about that,” Ashburn laughs.
One of the big points being made this year is New York becoming the first state in the nation to reach five billion dollars in costs to Medicaid just on Alzheimer’s alone. And those costs are expected to increase by about 24 percent by 2025.
But it’s more than the money for everybody on this bus. It’s letting those in need know they are not alone.
“People honestly consider Alzheimer’s and dementia a normal part of aging and it isn’t,” said Ashburn. “So that’s really what the public awareness campaign going to be focused on that, no, these memory loss changes that’s happening is not normal and there’s resources out there that can help with that.”
The amount of seniors receiving regular assessments for memory currently sits at 16 percent. Compare that to what's more often regularly assessed:
- Blood pressure: 91 percent
- Cholesterol: 83 percent
- Vaccinations: 80 percent
- Hearing/Vision: 73 percent
- Diabetes: 66 percent
- Cancer: 61 percent
Some of the top reasons physicians may not provide a cognitive assessment include a lack of complaints from a patient, patient resistance to testing and sometimes just a lack of time during a patient visit.
After lunch and many cups of coffee, no time is wasted once they enter the capital. First up, Senator Robert Ortt’s office. He happens to be in session when the group arrives so they meet with one of his assistants. Ashburn said that’s sometime better because they take better notes.
“Do you have a personal connection to Alzheimer’s disease or dementia?” asked Lauren.
“I’m sorry I don’t,” Ortt’s assistant said.
“You’re lucky,” Lauren said as everyone in the room laughed. “I’m thankful I don’t,” the aide replied.
Ashburn then asks everyone to introduce themselves and to share why they made the trip.
There’s a wife and daughter from Tonawanda whose husband/father was diagnosed with Alzheimer’s at the age of 59.
“With the early detection, at least for my dad with my mom and my dad, (he’s) still verbal. He can still communicate things,” the daughter said. “So they were able to get their power of attorney set up. We even talked about like funeral arrangements and things like that which is dark, but it is something you can actually talk about and know what he wants while he’s still able to talk about that and know what he wants while he’s still able to talk about that.”
Then there’s former nurse practitioner Kathleen O’ Brian who is with the Rochester group. She specialized in the diagnosis of management of dementia and now has it.
“Real dementia cannot be reversed or treated really. It’s incurable and it’s terminal,” she said while pausing for a moment. “The real importance of early intervention is to get people on a tract to getting better through support and everything else as well as early treatment as we know it of the disease.”
O’ Brian is one of many older women suffering from the disease. Women in their 60’s are more than twice as likely to develop Alzheimer’s moving forward in their life as they are breast cancer.
That’s when Ashburn steps in to drive home the message.
“We’d like to do TV ads, we’d like to do radio, we’d like to do print ads. Everything just to get the awareness out there, because it is a public health crisis,” she said. “I’m sure you’ve seen ads for smoking cessation. Right? The smoking ads, everybody knows those ads. Everybody knows the opioid epidemic that is very seriously happening, but this is also a serious public health crisis and it’s just going to continue getting worse if we can’t get the awareness out there, the services that are needed, and people in to these research trials.”
George, a Town of Niagara resident who was diagnosed with the disease three years ago, speaks up to remind the assistant this money isn’t for someone like him. He knows the disease is terminal. This is for future generations.
“It’s going toward young folks like yourself, so this doesn’t happen,” George said. O’Brian adds, “When the baby boomers age out, we think we have a crisis right now? It’s going to become so much worse,” she said.
After leaving Ortt’s office, they head to the Chamber. Ashburn goes over making sure everyone sticks together. The commotion is easy for anyone to get lost in, let alone somebody suffering from Alzheimer’s.
“It’s crazy down there in the chambers. It’s insane. It’s exciting, but it’s loud, it’s a little bit unorganized down there,” she said.
First to greet the group in the chambers is Assemblyman Angelo Morinello, who has been very supportive of their organization and has a relation to the disease.
“My mother is going to be 97 and she’s going through the forgetful stage,” Morinello said. “She’s healthy, she functions, but short term. Her 99 year-old sister is the same.”
According to Ashburn, Morinello was the first to partner with their association in the WNY region. Morniello wants to continue raising awareness by continuing to hold public presentations on the disease. Last year it was at a senior center on Grand Island.
“The biggest difficulty is caretakers not realizing the early signs and becoming frustrated with their family members, their parents, and even sometimes their siblings,” he said. “So what we’ve come up with is the need to educate caregivers and family members. So we’re doing like 101. But then we give them the resources to be able to learn more. Then if they need specific help, they got the ability to call.”
In regards to the money, Morinello isn’t worried.
“Three million is nothing. C’mon,” he said. “Even if you get it, let’s start thinking outside the box and how we can make more awareness of it.”
This is a bi-partisan issue. While Ortt and Morinello are republicans who have shown support, Democrats like Assemblyman Sean Ryan have as well.
“I myself don’t have anyone in my family, knock on wood, who suffer from Alzheimer’s or dementia. But it really helped when your group came an educated me to really the profound numbers of people struggling,” Ryan said. “Especially just older couples where one member of the partnership becomes a full time caregiver.”
Ryan credits the Alzheimer’s Association for coming to Albany every year.
“We’re asking for three million dollars for a public awareness campaign. $1.5 million from the Assembly, $1.5 from the Senate,” said one advocate.
Ryan replied, “I like the math,” as the floor outside the chamber erupted in laughter.
An advocate brings up the success a 2017/2018 public awareness campaign backed by Mayor Byron Brown had in the Buffalo region.
“Our numbers went up 42 percent for calls to the help line and people reaching out to services,” she said. “Getting the word out there will help reach hard to reach populations, like rural communities.”
Ryan replied, “I’m really happy to hear the Mayor did that in reaching out to the rural areas because those are the often harder to serve areas. The suburban chapters sometimes are easier to organize. Sometimes in the city it’s not as easy it’s just not as easy, and in the deep rural communities.”
Compared to older white adults, African Americans are twice as likely to have Alzheimer’s or other dementias and Hispanics are 1.5 times as likely to develop the disease.
A different advocate interrupted, “And we actually saw an increase of people of color right? I think four times more.”
The awareness campaign being pitched would focus on under-resourced communities such as communities of color and rural communities.
Surrounded by a swarm of purple, advocates ask Ryan, “So are you in?”
“I’m in,” Ryan said to applause. “I happen to have all of the money we have here,” he said jokingly.
Ryan added, “Sometimes people out there try to make it sound like the government is not of the people. This isn’t money from a foundation. Daddy Warbucks giving away money. This is your money and you want to maintain this as a community priority, but it only works when people are involved.”
On the bus ride home, advocates are optimistic. They feel like progress is being made. Change is possible. And people are listening.
Ashburn reflects on the day and why they continue to make the trip.
“It’s the most feared disease let’s be honest. I mean it’s losing our mind right? That’s a really scary thing,” she said. “So I think, personally, the way that we combat that is talking about it more. Talking about it, talking about it, talking about it. So specifically somebody coming in that doesn’t what to talk about it, that’s tough for us. Just because we also want them to come to terms in their own time. So we also don’t want to push it on them. We do get families that say, ‘You need to convince my loved one that they have this disease and that they need your help.’ That’s really hard for us. Because we also want to empower that individual too right? They have a right to accessing services and things like that. We can give them the tools, we can give them the support that they need. But if they don’t want it from us and the family just wants us to try and convince them, because often times that happens, it’s educating the family that, hey, also awareness with this disease as the disease progresses decreases too.”
At the end of the day, how much can a little awareness actually accomplish?
“It can save relationships,” Ashburn said. “There’s so many times where the behavior that can happen, even in the early stages of dementia, can be impacting the families significantly. Especially if it differs on an FTD, a frontal temporal dementia type diagnosis where those personality changes are really happening and impaired judgement and things like that. Again, education is really helpful in that way and it will help the relationship in a sense that, I’m not blaming my loved one for their behaviors.”
For a terminal disease where hope is sometimes hard to come by, a community effort to take power in to their own hands can act as a light in the dark.