How friends and chosen family can step into caregiving roles

Jean Campbell, along with several close friends, stepped in to provide assistance when their dear friend, Mary, had a stroke. Campbell wasn't Mary's daughter. She wasn't her sister or niece. She was her friend—a friendship that had begun decades earlier, when Mary was Campbell's daughter’s sixth-grade teacher in the Danbury school district in Connecticut.

Over the years, the two women became close. They attended the same church and eventually became part of a longtime group of friends who called themselves the “breakfast club.” After Mary's husband died, and with her son living in Ohio, the group made sure Mary wasn't alone. Then, about two years ago, a friend went to visit Mary and found her on the floor after suffering a stroke.

Mary went from living independently to a hospital, then rehabilitation and, within weeks, assisted living. Eventually, doctors diagnosed her with vascular dementia and, more recently, early Alzheimer's disease.

That's when Campbell's role changed. "I became her health advocate," says Campbell, a nationally recognized patient advocacy consultant. Besides becoming her medical power of attorney, Campbell helped get Mary to medical appointments, communicated with her assisted living facility, and made sure follow-up care wasn’t delayed.

Campbell and the rest of the breakfast club continue to make sure Mary is in good care. Her son remains involved and has financial power of attorney, but he is unable to be there day to day and relies on Campbell and the breakfast club to be his eyes and ears.

Different types of caregivers

Campbell’s experience illustrates a form of caregiving that is easy to overlook: the friend, neighbor, church member, or former colleague who gradually becomes the person an older adult relies on most.

As people live longer, sometimes far from relatives or without children, other relationships may become increasingly important to fill caregiving needs. But they also present challenges that traditional family caregivers may not face—particularly when dementia affects a person's ability to make decisions.

Most caregivers provide care for relatives, particularly parents or spouses. But caregiving doesn’t always follow traditional family lines. According to an AARP and National Alliance for Caregiving report, 11% of caregivers provide care for someone who is not a relative, such as a friend or neighbor.

“Not everyone is married or has adult children, and even when they do, those family members may or may not be able to take on the caregiving role,” says Jessica Besbris, MD, FAAN, assistant professor of neurology and medicine at Cedars-Sinai in Los Angeles. “In my practice, we see all kinds of relationships stepping in to provide care.”

Research suggests that the definition of “family” is broader than traditional family relationships. According to one study, researchers found that caregivers often considered friends and other nonrelatives to be family because of the care they provided. This relationship is known as fictive kinship. The findings suggest that the networks people rely on for care can extend well beyond biological or legal family ties.

When Helen Bundy Medsger’s older sister, Maureen Shaw, developed Lewy body dementia, it was Medsger—not Shaw’s husband or her three adult children—who became her primary caregiver and advocate. Shaw’s husband was uncomfortable navigating the health care system and managing the administrative demands of her illness, while her children were young adults trying to establish their own lives. When Shaw eventually asked Medsger, “Will you walk this path with me?” her sister didn’t hesitate.

Medsger has experience in health care administration, benefits, and advocacy. She cared for her mom, who had an acquired brain injury, and her dad, who also lived with lewy body dementia. Medsger helped her sister navigate the medical system, plan for retirement, manage finances, and participate in research. She managed Shaw’s medical care and kept her as physically and socially engaged as possible throughout the disease course. She also became Shaw’s medical power of attorney, working closely with her husband and children.

Caring for her sister only deepened their bond. For nearly 15 years, Medsger stood by Shaw’s side, acting as a trusted confidante through life's hardest moments and brightest joys. Though Shaw passed away in 2017 at age 67, Medsger looks back on those years with complete devotion: "Despite the challenges, I don’t regret a single day."

Legal planning for non-relative caregivers

A nearby relative or friend may know an older adult better than anyone in their immediate family. However, being the person who manages daily care doesn't automatically grant them the legal right to access medical information or make health care decisions.

"You can be the person who takes someone to every doctor's appointment and knows every medication and symptom yet still lack authority to make a decision when the person can no longer make it," says Sarah Patterson, PhD, a research assistant professor at the University of Michigan's Institute for Social Research. She studies aging and caregiving dynamics.

A health care proxy—typically designated through a durable power of attorney for health care or a similar state-specific document—allows a named individual to step in if the person becomes incapacitated. A proxy doesn't have to be a relative; it can be a trusted friend, neighbor, or non-traditional caregiver. Because legal requirements vary across states, it is crucial to use the appropriate state form and fulfill all witnessing or notarization rules.

“Before taking action, contact an attorney to understand your legal authority,” recommends financial planner Danielle Miura of Spark Financials. “It’s easy to get swept up in the moment when someone you care about needs help and forget that there are laws and boundaries around what you can do for them. Knowing those boundaries upfront can help you avoid unintentionally overstepping them.”

Patterson’s research underscores how frequently people are caught off guard when a crisis strikes. “Most of the caregivers we talked to were thrown into that position on a random Tuesday when something happened,” Patterson explains. “In hindsight, they expressed how much easier it would have been to have had a conversation beforehand about what the person wanted before they became incapacitated.”

For anyone stepping into a caregiving role—whether a relative or a friend—having a direct, proactive conversation before a crisis occurs is critical. Key questions to address include:

• Medical decisions: Who do you want making medical choices for you if you are unable to do so?
• Information sharing: Who should doctors, hospitals, and care facilities be authorized to speak with?
• Financial matters: Who should manage your finances and legal affairs?
• Emergency contacts: Who should be notified immediately in an emergency?
• Care preferences: What are your specific wishes regarding living arrangements and end-of-life care?
• Collaborative choices: Who else should be involved or consulted in major health and lifestyle decisions?

Beyond choosing a primary decision-maker, it is a good idea to designate a backup proxy and distribute copies of the completed documents to health care providers, facilities, and all named agents. It is also a good idea to make sure that other people close to the person are aware of whom they have named, particularly if it is not the spouse or child, so that there is no confusion when a non-family member begins making decisions on their loved one's behalf.

Having these legal protections in place protects everyone involved, especially non-family caregivers, who often face administrative hurdles or pushback from family members if clear paperwork isn't established.

"There are so many moments where an older adult would just be bulldozed over by the medical system if someone [wasn’t] sitting in the room advocating for them,” says Campbell. “Having that health proxy gives you the standing to step up and ensure they get the care and respect they deserve."

Making hard medical and end-of-life choices without prior guidance creates immense emotional strain. Clear planning ensures the older adult’s explicit wishes are honored while giving caregivers the legal authority and confidence they need to advocate effectively.

How to navigate caring for a friend

Ellen Potts understands both sides of caregiving for family—and friends. Ellen and her husband, Daniel Potts, MD, a neurologist in Tuscaloosa, AL, together have provided hands-on caregiving to nine family members and a dear friend from church. Their friend, Jeff, was their church organist, and over time he became like family because he had no close relatives after his mother passed away several years earlier.

In 2009, Jeff asked the Pottses to be his power of attorney and health care power of attorney. At the time, he was competent and had no known cognitive problems. Several years later, Jeff began experiencing memory and personality changes. Eventually, he was diagnosed with Alzheimer's disease.

The couple found that caring for a friend could be easier in some ways than caring for a relative. “There is less family history and baggage,” admits Ellen. “That can make it easier to step back and be more objective.”

But it could also make difficult conversations harder. "Telling your mother or your father, 'Mama, I love you. It's time to move into an assisted living facility,' is one thing,” says Ellen. “Telling a friend the same thing is a different story and has to be handled more delicately.”

And there were plenty of difficult decisions. Jeff eventually had to stop driving. Friends and neighbors helped him get groceries and provided rides. People accompanied him to appointments. Ellen managed his bills and other practical financial matters.

It took a village to provide support, including neighbors and other church members, especially from the choir.

After he moved from his home to a memory care facility, the Pottses consulted their attorney. They ultimately pursued guardianship and conservatorship through the court.

The distinction is important. Generally, a power of attorney is a document in which a person gives another individual authority to act on their behalf. A health care power of attorney allows a designated agent to make health care decisions when the person can no longer make them. A guardian or conservator, by contrast, is appointed by a court and can only be changed by court order. The precise responsibilities and terminology vary by state, but guardianship involves health care decisions, and conservatorship focuses on managing financial matters.

In Jeff’s case, the court-appointed arrangement gave Ellen the authority that the power of attorney alone did not provide. It also came with significant responsibilities. Once Ellen became guardian and conservator, she had to account to the court for money coming in and going out and explain how it was spent.

How non-traditional caregivers can work with family members

Non-family caregivers also have to navigate another delicate relationship: the person's relatives. Recognizing that her brother-in-law was overwhelmed by the administrative and legal aspects of the disease, Medsger took on most of the responsibilities, everything from managing benefits, tracking expenses, and quietly guiding financial decisions while ensuring he was kept informed every step of the way. “I worked very hard to try not to overstep my bounds as a supportive sister. I had access to some financial accounts, but definitely not everything.”

Campbell has worked hard to maintain a good relationship with Mary's son, even though he lives hundreds of miles away. She doesn't make every decision for Mary. Instead, she keeps him informed, asks for his input when appropriate, and respects that he is her son and has his own responsibilities.

When Campbell wanted to make a recent medical appointment for Mary, for example, she called her son first. When the family was deciding whether Mary should travel to her granddaughter's wedding, Campbell helped him understand what his mother wanted and then worked with him on the logistics.

"Establish a good relationship with the family," Campbell advises other non-family caregivers.

“That means communicating regularly, sharing observations without being judgmental, and being clear about who is responsible for which decisions.”

Build a supportive community before you need one

Both Campbell and the Pottses learned that non-traditional caregiving requires a team effort. While a nearby friend accompanies the person to medical appointments or a neighbor picks up groceries, a long-distance relative might handle finances. Professional care managers and home aides can then step in to fill whatever gaps remain.

The goal is to create a network before an emergency exposes the gaps. For Campbell, that network means Mary has her friends from the breakfast club who will notice when something is wrong, speak up when she needs medical attention, and jump into action.

For the Pottses, it meant a church community that continued to surround Jeff as his dementia progressed. “The choir group was there for him whenever he needed help,” says Ellen.

Neither woman set out to become a caregiver for a friend. They simply had relationships that mattered enough to make them step up.

As Campbell puts it, “friends can become family.” She adds, “This circle of friends became family over 30 years. Looking out for Mary isn't a burden. It’s just what you do for the people you love.”