Managing Care from Afar: The Challenges and Solutions of Long-Distance Health Management

MANAGING care from a distance has become an increasingly common challenge for families in the United States. As of the 2020 United States Census, 55.8 million people are age 65 or older — that’s 16.8 percent of the population — and many of them are choosing to “age in place,” or grow old in their own home rather than in an assisted living community.¹ And as people age, they increasingly need help managing their care from family. However, as many as 11 percent of caregivers live more than two hours away from their loved ones and conduct caregiving tasks from far away,² spending $7,242 annually (about a quarter of their annual income) on outof-pocket costs on caregiving expenses,³ as well as enduring emotional strain from juggling responsibilities remotely. Even so, long-distance caregivers are finding ways to manage their loved ones’ care, and they have more tools and options than ever before.

Unique Challenges of Geographical Separation

Long-distance caregivers face all the same challenges as local caregivers, including balancing caregiving responsibilities with work, family and personal life; bearing financial costs associated with caregiving; navigating the healthcare system; managing conflicts or unequal distribution of caregiving duties among family members; handling legal documents; ensuring a care recipient’s home is safe and accessible; finding respite care or support; discussing and planning end-of-life wishes and decisions; and figuring out how to handle grief and other emotions associated with caregiving.

But long-distance caregivers also face a unique set of challenges above and beyond those faced by local caregivers — challenges that stem from geographical separation from the care recipient. These include difficulty assessing the person’s condition accurately, coordinating care with local providers and managing emergencies remotely. Long-distance caregivers often struggle with feelings of guilt and inadequacy due to their absence, while also dealing with the financial and time burdens of travel. Reliance on technology for communication and monitoring is crucial, yet it can be challenging when not proficient.

Long-distance caregivers must navigate unfamiliar healthcare systems from afar, manage finances and legal documents remotely and find ways to maintain emotional connections despite the distance. They also face hurdles in arranging in-home services, participating in medical decisions and balancing their caregiving duties with local responsibilities. The stress of not being immediately available, coupled with the difficulty of providing hands-on care, can lead to burnout, especially without readily accessible local support systems.

A Case Study

Tom Bryant, a 58-year-old man who lives in Omaha, Neb., is currently a long-distance caregiver for his parents who live in Kingman, Ariz. (1,400 miles away) — both of whom have varying stages of dementia. He describes his father, who has been battling the disease for 10 years, as being in the late stages of dementia. His mother, who is more functional, has “holes” in her memory, often filling in the gaps with information that isn’t true as her mind races to make sense of her life.

Both parents are now living in the memory care wing of an assisted living facility, but they still need someone to make caregiving decisions for them. Bryant makes several trips per year to Arizona to care for his parents. In 2021, he spent the summer there taking care of his parents’ affairs and getting to know their bankers and healthcare facility workers. His sister, Teresa, who lives on the east coast, has also been able to travel to Arizona to care for their parents whenever they needed special attention and Bryant wasn’t available.

“We’re caring for them long distance as best we can with phone calls,” Bryant said. “We’re very intimately involved long distance with the staff. I’m on a first-name basis with the directors of all these places. When I call, I can tell the person who answers my name and ask for a staff member by name. And that’s been helpful.”

Bryant often coordinates care over the phone. When his father developed a tendency to turn violent when a facility staff member “ruffles his feathers,” the assisted living facility evicted him after one such incident, which meant Bryant was on the phone right away, trying to get his father into an Alzheimer’s facility that could handle him.

But some incidents require in-person attention: Before his mother was moved to the memory care wing, she wandered outside one night barefoot in the winter, believing she was looking for a swimming pool that didn’t exist. She ended up losing eight toes due to frostbite. Bryant traveled to Arizona to care for her.

One tool that helps Bryant stay connected from afar is an electronic device called a GrandPad — a simplified tablet for seniors that has phone capabilities. Bryant calls his mother every Tuesday and Friday on it. “I talk her down from the ledge on a pretty regular basis,” Bryant said. “I have a tendency to be able to cool her out a little bit — measurably, not completely.”

Bryant and his sister work well as a team, but not all long-distance caregivers have the support of a sibling, and they can’t always travel as often as Bryant and his sister can. But there are some practical things long-distance caregivers can do to get organized, stay connected and manage care from afar.

Staying Connected

The National Institute on Aging offers the following ideas for caregivers to stay connected and handle the affairs of care recipients from a distance:⁴

• Create a list of important phone numbers and email addresses. Keep it in a shared document or spreadsheet online and update it regularly.
• Set up a shared calendar online or in a smartphone app to coordinate with other caregivers.
• With permission, attend the care recipient’s telehealth visits.
• Participate remotely in conference calls or video meetings with healthcare staff.
• Help the care recipient learn about texting or video call features on his or her smart phone.
• If the care recipient is comfortable using a computer or tablet, set up an email account for him or her.

Innovative Assistive Technologies

Long-distance caregivers can also take advantage of many other technological tools to help them stay updated and informed about the care recipient’s day-to-day activities. Some devices even allow caregivers to control care recipient’s home environments from afar:

• Wearable monitors and apps for medication and glucose tracking are great for long-distance monitoring.
• For patients with Alzheimer’s disease or dementia, GPS tracking insoles can be placed inside their shoes and monitored from a distance.
• Smart watches can be set up to send real-time alerts in case of a fall. They can also monitor heart rates and changes in weight, track sleeping patterns and more.
• Smart stove sensors such as Ome Kitchen can be installed in the care recipient’s home for caregivers to monitor a stove remotely, with the ability to turn it off from afar.
• Smart door locks can be installed on standard doors. These require a pin code to unlock and can be shared with family members and caregivers.
• Smart cameras can be useful to monitor falls or other emergencies and allow caregivers to have instant access to their care patient.
• Smart assistants (such as Alexa or Google Home) can be used to set up reminders to take medications or for upcoming healthcare appointments.
• Smart pill dispensers such as Hero Health offer an automated, one-button press to sort and dispense doses and is linked with an app that helps manage and track medications and adherence.
• Rx text alerts can be set up to send automated refill or prescription pick-up notifications to a caregiver’s phone; some pharmacies even offer free delivery.
• Websites such as Lotsa Helping Hands, Meal Train and Care Calendar can help caregivers coordinate meals and more for the care patient.
• Health update blogs can be set up to keep family and friends in the loop.

One example is CaringBridge, which sends email notifications to friends and family so they can stay updated, allowing the caregiver to provide the information just one time rather than sending out the same information via text or email over and over.

Coordinated Care Networks

Volunteer and low-cost organizations and agencies also avail themselves to caregivers to help with transportation to medical appointments, meal delivery and social visits. The National Association of Area Agencies on Aging provides a list of these types of organizations. The Family Caregiver Alliance also has listings of state-by-state resources where caregivers can get information specific to where their loved one resides.

Working with local healthcare providers and case managers who can be the eyes and ears for distant family members helps ensure continuous care. This team-based approach can alleviate some burdens.

Use of Professional Care Managers

For caregivers who are dealing with difficult or extreme circumstances, hiring a professional care manager (also known as geriatric care managers or aging life care professionals) can help families coordinate care; make informed decisions; identify social services and programs; make referrals to financial, legal or medical professionals; create short- and long-term care plans; act as a liaison to family members; arrange respite care; and more to help caregivers stay updated on their loved one’s condition without being physically present.

Caregivers can find directories for professional care managers through websites such as AgingCare, AgingLifeCare Association, Caring and others (Table). The AgingCare website recommends that professional care managers be certified by the National Association of Social Workers, the Commission for Case Manager Certification or the National Academy of Certified Care Managers and be a member of the Aging Life Care Association. And, its website offers a list of interview questions a caregiver might want to ask potential candidates.

Legal Considerations

Like other caregivers, those who are doing so long distance need to consider securing power of attorney or guardianship, advanced directives and estate management documents. This can feel overwhelming from afar, but many free or low-cost resources are available, including from the AARP (that offers family caregiving guides for free, as well as some pro bono services), American Bar Association (which offers pro bono programs for low-income clients), U.S. Department of Veterans Affairs, Legal Services Corporation (a nonprofit organization that provides free legal services to low-income Americans), National Disability Rights Network (which provides legally based advocacy services to people with disabilities) and more.

Innovation Eases the Burden

As our population ages and families become more geographically dispersed, the need for effective long-distance caregiving strategies will only grow. By leveraging technology, professional services and community resources, caregivers can bridge the physical gap and provide meaningful support to their loved ones. The future of long-distance caregiving lies in the continued development of user-friendly technologies, the expansion of telehealth services and the strengthening of support networks.

Healthcare professionals will need to recognize the evolving landscape of caregiving and work to support both care recipients and their distant caregivers. By doing so, distance will not compromise the quality of care and connection that every individual deserves. Continuous education, open communication and a willingness to adapt will be the key to navigate the complex landscape of long-distance caregiving in the years to come.