N.C. organizations, caregivers reflects on Alzheimer's Disease Awareness Month

November is Alzheimer’s Disease Awareness Month. Local organizations are honoring lost loved ones, hosting events for caregivers and educating the public to mitigate stigma around the disease. 

Alzheimer's disease is the most common type of dementia — 180,000 people aged 65 and older are living with Alzheimer’s in North Carolina. 

“It's something that all of us are going to be touched by in some way, shape or form,” Kendall Kopchick, an eldercare social worker in Orange County, said. 

North Carolina’s population of people over 65 is expected to increase 52%  by 2040, according to the North Carolina Department of Health and Human Services. 

Lisa Roberts, executive director of the Eastern North Carolina chapter of the Alzheimer’s Association, said the organization's focus this month is on caregivers. 

“They have such a difficult job caring for their loved ones that have been impacted by Alzheimer's or another dementia,” Roberts said. 

Alzheimer’s is a progressive disease and requires a high level of care in moderate and late stages, according to the organization. 

Georgia Johnson, a former freelance caregiver for people with Alzheimer’s, said the toll the disease takes on families is also hard to cope with. 

“When that decline comes, it's very fast,” Johnson said.  “And it's sad because you're seeing, whether it's your parents or a friend or other family member, don't remember who you are.”

The Eastern North Carolina chapter of the Alzheimer’s Association is offering free educational courses and support groups this month to help families and caregivers of people with dementia.

Over 350,000 family caregivers are impacted by the disease in North Carolina, which equates to 514 million hours of unpaid care provided by Alzheimer’s caregivers in 2021, according to data from the Alzheimer's Association.

Medicare does not cover in-home care for people with Alzheimer's disease, so most of the costs come out of pocket from those living with the disease or their families.  

“It gets to be a really expensive disease to have because the more challenges someone is dealing with and the more someone progresses, the more supervision and support they need,” Kopchick said. 

Aside from the monetary expenses associated with Alzheimer's, Kopchick said familes also experience an ambiguous feeling of loss. 

As a person with Alzheimer’s progresses through the stages of the disease, they slowly lose memory and social functionality, according to the Alzheimer's Association. 

“You're losing a huge piece of that person, and that's a really hard thing for families to manage,” Kopchick said. 

Alzheimer’s currently has no cure, but researchers are working to find one. 

“Research is key. Research is our way out of this — research, new treatments, finding a cure — so we can really live in that world without Alzheimer's,” Roberts said. “ We can't do that without obviously the support of the community, so raising awareness is essential.”

Kopchick said it’s important to be educated about Alzheimer’s disease because it is likely that you will either know someone with Alzheimer’s or have it yourself. She also said it’s important to be prepared and to have an understanding of the disease for when it may impact you. 

She added that there is a lot of stigma surrounding the disease and that it can be mitigated through education efforts. 

“People treat people with dementia like they don't exist, like their minds are completely gone,” Johnson said. “That's not the way that it should be.”

Alzheimer's can be extremely isolating for those living with the disease. Roberts said that the Alzheimer’s Association has a 24-hour helpline with licensed clinical counselors to help those that may be struggling. 

“Alzheimer's doesn't stop,” she said. “And neither do we.” 

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