The Alzheimer’s Association Connecticut chapter will meet at the state capitol in Hartford on Wednesday to urge lawmakers to support two policies the organization is proposing.
Both would help those who are affected by Alzheimer’s disease better plan for their future, according to Kristen Cusato, director of communications for the Alzheimer’s Association's Connecticut chapter.
“The earlier you're diagnosed with this disease, the more opportunities you have to take the new medications that are FDA-approved for those in the early stages. ... Plan for your future, plan for what it looks like when this disease progresses and also incorporate some lifestyle interventions,” Cusato said.
One policy the organization hopes to advance in the state legislature is insurance coverage for biomarker testing. The testing measures proteins in the blood or cerebrospinal fluid to help diagnose the disease. They can also assist doctors in determining whether a patient has Alzheimer’s or another type of dementia.
One of the testing options is by getting a PET scan, a scan of the patient’s brain to find any of the proteins. Another is a lumbar puncture, a needle that collects fluid to determine if there are proteins, combined with cognitive testing.
For some, getting a diagnosis is a difficult reality to acknowledge because of the stigma that surrounds the disease. Yet, receiving an early or recent diagnosis could help qualify patients for two of the FDA-approved medications that delay the progression of the disease, Cusato said.
“There are a lot of things we still need to overcome with this disease and one of them is stigma. I think a lot of people are fearful of coming forward. They say, 'Well, there's not a cure. Why should I even get diagnosed?' But there are a lot of things you can do,” Cusato said.
Over two-thirds of those with Alzheimer’s are women, and African Americans are twice as likely to develop Alzheimer’s when compared to people of other races and ethnic groups, Cusato said.
According to the National Library of Medicine, “it is only through receiving a diagnosis” that patients can get access to resources and treatments that can improve their cognition and still have a great quality of life. Additionally, while they still have the capacity to make decisions, they can plan ahead on legal, financial or other future life choices.
The Alzheimer’s Association's Connecticut chapter will also urge lawmakers to consider a proposal that would establish an Alzheimer’s and Dementia Advisory Council.
Cusato said sometimes patients are diagnosed by a doctor, but aren’t given any resources or told what to do next.
Establishing a council would continue the work of the current Alzheimer’s state plan, educate people more on the disease and continue to provide resources for those that are affected, Cusato said.
“We're also asking for the formation of a committee to continue to push the Alzheimer's state plan forward, to make sure that there are people in place to continue to put Alzheimer's as a top priority for this state,” Cusato said.
In Connecticut, there are more than 76,000 people living with Alzheimer’s and 128,000 unpaid caregivers. The association hopes the stories shared Wednesday at Connecticut’s State Alzheimer’s Advocacy Day will leave a lasting impact on state legislators.
Advocates such as Cusato remain optimistic that if these policies are passed, it will provide some relief to those diagnosed with Alzheimer’s or dementia and their caregivers.
“There are two FDA-approved medications for those in the early stages that are making headway for people who have this disease and giving them more time to live independently,” Cusato said.
“That's critical. When my mom was sick, I wish that was there, but it wasn't. They were just approved, and within the last couple of years, we are making great strides in research and making great strides to help families.”
