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Decision-Making Authority Evolves Over Time
We found in our research that caregiving relationships change as older adults progress through the aging continuum. Decision-making is rational out of necessity but can also become increasingly emotional for both parties. Gerontologists and caregiving specialists have developed frameworks that break down stages of aging for older adults, which helps one to understand the changing needs, preferences, and challenges that seniors face.
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Stage1.Thrive
In less than two years, Carin retired from her job as a textile designer, her husband died, she sold a house, bought a house, lost a close friend, and moved to a new city.
“I have a lot of people dying,” she said. “It’s an era of loss. And growth.”
For Carin, older adulthood is highly dynamic, and many seniors like her are starting over — moving, finding new friends, joining new communities.
“You have to embrace change,” Carin said. “You can’t be stagnant.” She’s determined to maintain some independence as she ages, and she already is redefining the caregiving dynamic.
“My daughter doesn’t know it yet, but she won’t be my caretaker; I’ll pay someone for that, if I can,” she said.
In choosing health care professionals and attorneys, Carin looks for people much younger than she is.
“I want someone who isn’t going to die on me, and [who’s] young enough and sharp enough to help my daughter when I go,” she said.
There’s also an increasing sense that time is growing short.
“It’s shocking to me that maybe I only have 20 more years,” Carin said. “It’s very shortened. Will I be ready? It’s a spiritual journey, a physical journey, and a how-I-want-to-be journey.”
She has made mistakes with her finances but has been reluctant to ask for help. She lost seven months of Social Security payments after her husband died and she moved because she didn’t realize she had to present a death certificate to the state she relocated from to claim his benefits.
“In California, it just rolls over,” she said. “I needed somebody to walk me through this in more detail. I was just kind of finding it out on my own as I was going along.”
Like many people her age, Carin is interested in technology such as the Apple Watch, which has health-monitoring apps. However, she is wary of tech that seems to be a luxury and is put off by subscription models. She recently dropped an app with a subscription because she felt it was too “opportunistic.”
Disclaimer: The images used on this website are for illustrative purposes only and do not represent actual individuals.
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Stage2.Supported Autonomy
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Lillian, 74, is trying to “age in place,” but the challenges continue to mount as she gets older. She owns two homes and requires constant medical care. A cottage on her property may allow her to stay. But she couldn’t manage the upkeep of her homes without Joe, her 78-year-old property manager. “You have to have support,” Lillian said. “You can’t just age in place by yourself.”
Lillian’s support comes from outside her traditional family because she feels as if she’s still her children’s caregiver.
“I’m the ancient one, taking care of everybody,” she said. “My kids are struggling with work, kids, divorces — they see themselves as the ones who need support. I’ve never once had an offer to help. And they’re scattered across the country.”
Lillian was laid off the first time when she was 50, and she’s trying to decide whether to sell part of her property to shore up her financial security, but she worries about how to handle the transaction.
“I need somebody to help me think about all this,” she said, adding that the person must be “really in tune.”
After several surgeries and ongoing health issues, Lillian tries to stay in shape and walks five miles or more several times a week. She sees taking care of her body as her full-time job and declares herself a “maintenance worker” when it comes to her health.
In choosing health care professionals, she prefers those who are willing to listen to her.
"I want to sit down and talk,” she said. “I’m not going to accept everything that [they’re] telling me because a lot of their information is coming off the computer. I’m the one who knows this body. They have to meet my criteria and work with me. It’s always about the people, not their credentials. You can go to whatever med school, but if you don’t talk to me, it’s not going to work out.
Lillian limits her use of technology. She largely gave up using the computer because it hurts her back, logging on only occasionally to check email. “The creators of tech have generally not been very good at limiting what’s harmful,” she said.
Disclaimer: The images used on this website are for illustrative purposes only and do not represent actual individuals.
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AJ, 37, is a caregiver for his aging mother. He lives two hours away and doesn’t like returning to his hometown where she still lives. They share the responsibility for her finances. She still makes strategic decisions about money, such as how much to spend on what; he handles the transactions largely through the computer. For example, she chose the car she drives, but he manages the payments.
“I take care of things, not her,” he said.
If caring for his mom were a business, AJ’s role would be tech and back-office support. His older brother handles her will and estate planning, and a younger brother provides emotional support and companionship.
His mom is averse to technology and online shopping and still relies on checks to pay for things. He’s used his own email to set up her online accounts for the car payment, insurance, and other expenses.
While his mom has a smartphone, AJ hasn’t told her that it lets him track her. Because she’s alone and far away from where he lives, he worries that something might happen to her and he wouldn’t know. She’s refused to allow him to place cameras in the house or even get her a Life Alert monitor.
AJ will sometimes go with his mother to her medical appointments, helping her understand what the doctor says. For health information, he typically goes online, looking for sources that are “a bit more respected.” YouTube videos have helped him explain medical information to her, such as showing how Medicare works.
He also relies on Reddit. “You can actually read what some people go through, what their experience was like,” he said. He trusts real experiences of people more than articles he reads on medical sites or online publications.
Disclaimer: The images used on this website are for illustrative purposes only and do not represent actual individuals.
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Stage3.Increased Dependence
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Stage4.Full Dependence
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LaTanya is caring for her aging father, who has memory loss. She recently put her dad in a memory care unit.
Meanwhile, she’s struggled with bipolar disorder and thoughts of suicide. At 32, her employment and housing are unstable.
“I’m still learning how to take care of my dad’s business as a young adult,” she said. “I don’t have that much insight and experience dealing with this kind of stuff.”
She worked through the Veterans Health Administration to secure her dad’s memory care, but she felt that the agency was working against her rather than serving as a resource.
Her dad gets lonely and likes talking to people over the phone. She worries that he will fall victim to financial scams that target the elderly. He has changed his insurance policy repeatedly just so he can talk to an agent on the phone. LaTanya doesn’t want to declare her dad mentally incompetent, but she does make sure all checks go to her so that he can’t recklessly spend his money.
She recently took away his smartphone because she needed it to manage the two-factor verification on all the online accounts she handles for him. She has reached the point, as many caregivers do, where she must keep her dad’s medical records and financial identity within her control.
Her brothers recently made themselves beneficiaries of their father’s pension without consulting her, even though she is the primary caregiver. She doesn’t want to fight them because it would add to the emotional toll of caregiving.
“I think I’m going to just let it go,” she said.
Disclaimer: The images used on this website are for illustrative purposes only and do not represent actual individuals.
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