Caregiving advocate Rosalynn Carter has dementia: 'We are experiencing the joy and the challenges of this journey'

By Jessica Hall

Former first lady Rosalynn Carter always said there were only four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.

After a life of service, Carter is now one of those in need of care.

Read:Rosalynn Carter diagnosed with dementia, according to Carter Center

Carter, 95, was diagnosed with dementia and remains at home with former President Jimmy Carter, 98, who has been receiving hospice care since early this year.

Read: 'We do not do the end of life well' in America: How hospice can help ease the last days

Carter, who founded the Rosalynn Carter Institute for Caregivers in 1987, spent her public life advocating for individuals and families affected by mental illness and for those in caregiving relationships with loved ones. The Institute said 53 million Americans currently serve as family caregivers to someone who is aging, ill or disabled.

One in 10 older Americans has dementia, the Carter family said in a statement.

Dementia is not itself a disease but the general term for symptoms indicating cognitive decline, according to the National Institutes of Health.

"We recognize, as she did more than half a century ago, that stigma is often a barrier that keeps individuals and their families from seeking and getting much-needed support. We hope sharing our family's news will increase important conversations at kitchen tables and in doctor's offices around the country," the Carter family said.

Carter also was an advocate for mental-health care at the Carter Center, the humanitarian organization the couple founded in 1982. The Carters, married nearly 77 years, are the longest-married first couple in U.S. history. The couple volunteered together for decades with Habitat for Humanity.

Carter learned at a young age the meaning, importance and burden of caregiving. Her father had cancer and died when she was 13. The future first lady cared for him during his illness, as well as for her three younger siblings. Within a year of his death, her grandmother unexpectedly died, and her grandfather moved into their home so her mother could care for him.

"The universality of caregiving is clear in our family, and we are experiencing the joy and the challenges of this journey," the Carter family said. "We do not expect to comment further and ask for understanding for our family and for everyone across the country serving in a caregiver role."

Dementia is the loss of cognitive functioning -- thinking, remembering, and reasoning -- to such an extent that it interferes with a person's daily life, according to the National Institute on Aging. While it is not a normal part of aging, about one-third of all people aged 85 or older may have some form of dementia, the NIA said. Alzheimer's disease is the most common form of dementia among older adults.

Read: People who do this one thing every day have half the dementia risk that the rest of us do

Dementia is the result of changes in certain brain regions that cause nerve cells and their connections to stop working properly. Although there is no specific preventive measure for dementia, factors such as daily walks, healthy eating habits and vitamins can help delay cognitive decline, experts have said.

Read:Eating these simple foods may slow Alzheimer's by a third

Carter is the latest public figure to disclose a dementia diagnosis. Actor Bruce Willis was recently diagnosed with frontotemporal dementia, or FTD, which is the most common form of dementia in people under 60.

Read:4 things you can do to fight dementia and improve your memory

Signs of dementia can vary, according to the Alzheimer's Association. Examples include problems with short-term memory; difficulty keeping track of important items like a wallet or purse; and struggles planning and preparing meals or remembering appointments or traveling out of the neighborhood. The damage is permanent, and the symptoms are progressive, meaning they get worse over time.

Also see: Two breakthroughs on dementia -- one that's useful right now

There is no one test to determine whether someone has dementia. Doctors diagnose dementia based on medical history, a physical examination, laboratory tests, and the characteristic changes in thinking, day-to-day function and behavior associated with each type, according to the Alzheimer's Association.

Read:New Alzheimer's drug could bring hope to patients, but could be out of reach for people on Medicare

There is no cure for dementia. New drugs show they slow the progression of Alzheimer's. The Food and Drug Administration is set to announce soon whether it will grant full approval to lecanemab after granting accelerated approval in January. Lecanemab was shown to moderately slow the progression of Alzheimer's in patients in the earliest stages of the disease. The drug, however, poses risks to people who take blood thinners.

-Jessica Hall

This content was created by MarketWatch, which is operated by Dow Jones & Co. MarketWatch is published independently from Dow Jones Newswires and The Wall Street Journal.

(END) Dow Jones Newswires

06-01-23 1029ET

Copyright (c) 2023 Dow Jones & Company, Inc.