‘Life doesn’t end’: Greenville woman turns early onset Alzheimer’s into push for advocacy
More than six million people are battling Alzheimer’s disease nationwide.
The Alzheimer’s Association released new data this week showing numbers are rising.
In South Carolina, the organization says 95,000 had some form of dementia in 2020. That number is expected to jump to 120,000 by 2025, for a 26.3% increase.
After working as a nurse in hospitals for decades, one Upstate woman thought she knew exactly how to spot the signs of Alzheimer’s. When she was diagnosed with early onset Alzheimer’s in 2016, she was in shock.
“I had done everything I could to try and not let this be the diagnosis,” Greenville resident Marie Turner said.
At 48, dementia was the last thing on Turner’s mind. She was always multitasking at her job, and never noticed the small warning signs.
When she was diagnosed, she says it was hard to explain to her colleagues, because on the outside, she didn’t fit the stereotypical mold for someone with Alzheimer’s.
“It’s like, ‘No. You don’t have dementia. You don’t have Alzheimer’s. You don’t look like you have Alzheimer’s. You’re fine,’” Turner said.
Turner says it started off with headaches and tremors. She went to some doctors and got some scans, but nothing seemed particularly wrong.
“‘It’s your age. You’re overdoing it. You’re working too hard,’” she said she was told. “But then, I just knew one day there were just too many things that kept happening.”
After going to more doctors and getting countless tests and scans done, Turner was diagnosed with early-onset Alzheimer’s. Turner says doctors believe it was brought on by CTE which she had developed from having around a dozen concussions, starting from the age of 11.
Here's how The Alzheimer's Association defines CTE.
“Most people consider Alzheimer’s to be an old person’s disease,” Jamie Guay, the Greenville area’s program director with The Alzheimer’s Association, said.
The Alzheimer’s Association says deaths related to dementia have more than doubled from 2000-2019, increasing by 145%. In South Carolina, dementia-related deaths were 20.2% higher than the average, with 1,001 unexpected deaths in 2020.
“The social engagement is so important, so with the isolation and with the lack of human interaction for a lot of the individuals, that can foster a very fast decline,” Guay said.
To fight those declines, daily life for Turner revolves around routine.
“I have to work so hard,” she said. “I have to work so hard to keep everything together. The main thing is I have to work on self-care.”
Turner says it’s important she makes time for herself though and do things she’s always enjoyed doing.
She has also turned her diagnosis into an effort of advocacy.
“I would wear two different earrings or to different clogs,” Turner said. “Looking back, I wish I had taken those signs.”
Turner has also learned how to take things in stride and not let the disease become who she is.
“Life doesn’t end with a dementia diagnosis,” she said. “It does not. A different one begins.”
Turner has become an advocate for people struggling with dementia all over the country. She’s also started groups here in the Upstate to give people an outlet to go through the process of the disease with others.
Below is new data released by the Alzheimer’s Association for 2021:
2021 Alzheimer’s Disease Facts and Figures: At a Glance
Prevalence, Incidence, and Mortality
• An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s dementia in 2021.
• More than 1 in 9 people (11.3%) age 65 and older has Alzheimer’s dementia.
• Two-thirds of Americans over age 65 with Alzheimer’s dementia (3.8 million) are women.
• Deaths due to Alzheimer’s between 2000 and 2019 have more than doubled, increasing 145%.
• 1 in 3 seniors dies with Alzheimer’s or another dementia.
Caregiving
• In 2020, more than 11 million caregivers of people with Alzheimer’s or other dementias provided an estimated 15.3 billion hours of unpaid care, a contribution to the nation valued at $257 billion.
• Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia.
• Approximately two-thirds of caregivers are women, and one-third of dementia caregivers are daughters.
• Forty-one percent of caregivers have a household income of $50,000 or less.
Cost of Care
• In 2021, total payments for all individuals with Alzheimer’s or other dementias are estimated at $355 billion (not including unpaid caregiving).
• Medicare and Medicaid are expected to cover $239 billion or 67% of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $76 billion.
• Total payments for health care, long-term care and hospice care for people with Alzheimer’s and other dementias are projected to increase to more than $1.1 trillion in 2050.
• The total lifetime cost of care for someone with dementia is estimated at $373,527.
Other Key Findings from “Race, Ethnicity and Alzheimer’s in America:”
• Concern about developing Alzheimer’s is lower among Native Americans (25%), Blacks (35%) and Hispanics (41%), especially when compared with whites (48%).
• More than one-third of Native Americans (35%) and nearly 3 in 10 Hispanics (28%) do not believe they will live long enough to develop Alzheimer’s or another dementia.
• More than half of non-white Americans believe significant loss of memory or cognitive abilities is “a normal part of aging.”
• Hispanic, Black and Native Americans are twice as likely as Whites to say they would not see a doctor if experiencing thinking or memory problems.
• One in 5 Black (21%) and Hispanic Americans (20%) say they would feel insulted if a doctor suggested a cognitive assessment.
• Nearly 2 in 3 caregivers (64%) across all groups say that caregiving is stressful, but nearly all (92%) say caregiving is rewarding as well.