Many older adults dread becoming a burden on their loved ones even more than death, a fear experts say reflects Americans’ deep emphasis on independence — and one that can keep families from planning for caregiving.
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The survey, commissioned by personal safety technology company LogicMark, found that 46% of care recipients said becoming a burden on their family was a major concern, ranking above both fear of cognitive decline and death. Losing independence ranked as respondents’ biggest concern overall, cited by 60%.
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For Christina Irving, director of client services at the Family Caregiver Alliance, the results are not surprising.
“I think in our society, overall right now, we place so much value on independence that the idea of having to rely on someone else isn’t something many are comfortable with,” Irving said.
In the U.S., “successful aging” is often centered on remaining self-sufficient for as long as possible, Irving said. But most people eventually need some form of support, and accepting that independence may look different with age can help ease those fears.
“Interdependence is much more common than people realize,” she said.
The fear of becoming a burden can encompass far more than needing help with daily tasks, Irving added. Older adults often worry about the physical demands placed on family members, the financial costs of care and the prospect of losing control over their finances, medical decisions or conversations with doctors.
Barry Jacobs, a Philadelphia-based psychologist and co-author of the AARP Caregiver Answer Book, said he has heard similar fears throughout his career.
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“I’m not surprised,” Jacobs said. “I’ve heard many say they would rather die than be in a debilitated state where someone has to care for them.”
For many older adults, he said, the thought of becoming completely dependent on others can feel deeply humiliating.
“If at the end of life you’re in this helpless, hopeless position, it’s such a humiliating place to be; they can’t tolerate the thought of it,” Jacobs said.
The findings also point to a communication gap between older adults and their families.
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LogicMark CEO Chia-Lin Simmons said nearly half of care recipients surveyed had not discussed their care preferences with anyone, and only 19% had held detailed conversations with loved ones about what they want as they age.
“It tells us we have a caregiving system built on silence,” Simmons said. “The desire to avoid becoming a burden creates the very burden it was trying to prevent.”
Experts say those conversations are easier when they happen before someone’s health declines. Irving said while families may be reluctant to raise the topic when things are going well, that is often the best time to plan for caregiving, including desires around end-of-life care and finances — conversations that can ease stress when the caregiving dynamic eventually begins.
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One approach that can help some families, Irving said, is to remind parents that they once cared for their children and that their children now have the opportunity to return that care.
Jacobs shares a similar message with older adults who struggle to accept help, encouraging them to see accepting care as an opportunity rather than a burden. He said many adults are grateful for the chance to care for their parents and see it as a way to repay them.
“If you allow adult children the role of helping, you’re giving them a gift of gratification,” he said.
As Americans live longer and families become smaller, Irving said, ideas about who provides care and how caregiving responsibilities are shared are evolving. With fewer adult children often available to take on those responsibilities, families may need to discuss expectations earlier and broaden the circle of caregivers to include friends and other trusted people, not just relatives.
Asking relatives about trusted friends who may be able to help and how they feel about different living arrangements, including in-home or residential care, can help ease the burden of caregiving.
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