Strategies for Long-Distance Caregivers

Strategies for Long-Distance Caregivers

Being a primary caregiver for a family member who lives in a different city or state can feel like a full-time job, complete with its own set of stressors and related emotions.

“I think caregivers can be disappointed at times,” said Vicki Williford, a chronic care nurse in Greensboro, North Carolina. “The home health nurse comes and goes, and [the caregiver] still has another 23 hours to go.”

That’s 23 more hours to make sure the care recipient has taken medication, avoided falls, eaten healthy meals, and made it to the bathroom in time — all of which have to be supervised remotely by long-distance caregivers.

The need for non-clinical family members to provide care to aging loved ones will likely continue to rise, due to a growing population of seniors and the shortage of health care providers in America. The burden of caregiving may be further complicated by distance; a 2015 study from the National Alliance for Caregiving found roughly 25% of caregivers live 20 minutes or more from the recipient’s home (PDF, 1.8 MB).

What unique challenges do long-distance caregivers face, and how can a relationship with a health care team help overcome these challenges?

The Challenges of Caring from Afar

Nearly 44 million Americans provide unpaid care for a family member. Of these Americans, between 5 million and 7 million are doing so from a distance of one hour or more, according to a report from the Journal of Gerontological Social Work.

All caregivers, regardless of geographic proximity, are met with tasks that challenge emotions and resilience, as they work to provide the best possible quality of life for a loved one in need of support. They may have difficulty accessing clinical training, balancing caregiving with a full-time job and personal life, and managing the length and scope of caregiving.

Those supporting a family member from a distance may experience added stress from coordinating logistics remotely, without the affirmations of face-to-face interactions from a health care team and their loved one.

Challenges unique to long-distance caregivers include:

  • Traveling to and from the care recipient’s home
  • Using technology to stay in touch
  • Limited in-person communication with the care recipient
  • Building provider relationships from afar
  • Coordinating legal and financial concerns remotely
  • Planning visits for other family members
  • Keeping all parties up-to-date
  • Wavering confidence about choices made for the care recipient

Digital Tools for Long-Distance Caregivers

Some caregivers may find help through digital tools that make it easier to check in on a care recipient, which can include:

Mobile Apps – For face-to-face communication

Smart Devices — to adjust home temperature or door locks

Wearable Devices — to transmit vitals or call 911 in case of an emergency

Home Cameras — to monitor activity and visitors; for keeping track of medication schedules and deliveries; providing alerts of home break-ins

Keep in mind, not all technology seems user-friendly at first, so it’s important to check in with all parties — including a health care provider — about the level of comfort using new tools.

Being Part of the Health Care Team

Many care recipients have a team of providers, such as nurses, managing multiple aspects of their treatment. Caregivers can certainly be a part of that team, even from a distance. That team can also offer support for the caregiver.

“All the research suggests that we do better with adversity by having people who are in our corner,” said Dr. Barry J. Jacobs, clinical psychologist, family therapist, and author of The Emotional Survival Guide for Caregivers.

“We don’t take over people’s lives,” he said of caregivers. “We work with them to provide support to enhance their lives to be more functional and help them live more the way they want to live.” Both the caregiver and provider need to understand the strains that each party is experiencing, which comes from clear and consistent communication. There are several ways family members can demonstrate to providers they want to be an active participant in a loved one’s care.

Building a Relationship with a Provider Remotely
  • Identify a member of the family who has the capacity and availability to be granted power of attorney for medical decision-making and communication with the primary provider.
  • Establish the need for regular check-ins and preferred modes of communication.
  • Attend appointments when possible. If it’s not possible to be there in-person, try dialing in, or follow up with a phone call to the provider and care recipient.
  • Conduct background checks of aides who are providing in-person care.
  • Keep notes of changes in health or questions about the care recipient’s needs.
  • Make a list of medications and other treatments in order to support medication adherence and monitor changes in therapies.
  • Understand that a treatment plan will evolve as the care recipient’s condition changes, and be open to that change.

Williford said it’s common for families to lack consensus on a treatment plan for a patient with an unexpected hospitalization, which can make a provider’s job much more difficult.

“Families come in from all these different states, out of town, and then they’re now faced with: ‘What do we do with Mom?’” she said. “They’re trying to decide, and yet the mom’s saying to me, ‘No one asked me what I wanted.’”

Having these conversations as a group can help the care recipient feel that they have agency over their treatment plan and keep everyone on the same page — regardless of what time zone they’re in.

A Taste of One’s Own Medicine

Supporting a loved one from afar involves complicated responsibilities and constant communication that can prove taxing. It’s common for long-distance caregivers — especially those with less support — to feel emotionally burned out or exhausted. Being far away from the care recipient can increase anxiety about a loved one’s wellbeing, and may be compounded by stress of periodic traveling or lack of sleep for providing care across different time zones.

Without proper self-care, caregivers may experience caregiver strain, or a feeling of burnout that leaves individuals unable to perform daily tasks or cope with feelings of anxiety.

“You know you’re experiencing burnout as a caregiver if you’re waking up in the morning with a sense of dread,” said Jacobs.

How to Manage Burnout as a Long-Distance Caregiver
  • Set a cadence for phone calls.
  • Make time to self-reflect each day.
  • Take an inventory of your emotions.
  • Accept help when it’s offered; ask for help when it’s not.
  • Utilize a care team on the ground to perform in-person tasks.
  • Take notes during visits so there’s less to memorize.

Drawing boundaries is one thing; adhering to them is another. Caregivers have to carve out time to care for themselves and get the help they need as well. Jacobs said he uses a marathon as a metaphor for caregiving.

People “need to see this as a long, arduous course for which they need to really take care of themselves along the way,” he said.

“They run past a water station at mile five and people are waving water bottles at them,” Jacobs said. “That kind of self-replenishment on a regular basis develops some sort of emotional wellness program.”

Even when distance is not a factor, caregivers are still at high risk of being overwhelmed. In fact, boundaries can be extremely difficult for spousal caregivers in particular, who feel a heightened sense of obligation for their loved one’s well-being. Spousal caregivers are at increased risk for burnout. Many of them — almost one in five — are outlived by their husband or wife, according to a 2018 study published in the journal Alzheimer’s & Dementia. Accepting an offer of assistance, even when it doesn’t seem crucial at the time, can help caretakers sustain the energy and will needed to provide the best quality care, while still finding time to rest and enjoy life with their loved ones.

Resources for Long-Distance Caregivers

Refer to the organizations below for further reading and resources on how to provide high-quality care for a loved one, from afar.

Citation for this content: [email protected], the online DNP program from the Simmons School of Nursing 

Climate Change Awareness: The Role of Health Providers

Climate Change Awareness: The Role of Health Providers

As trusted professionals in the eyes of the public, health providers are considered stewards of public health and safety.

A view of Hong Kong smog from Victoria Peak.
A polluted morning in Hong Kong.

Health providers are ethically bound to advance health holistically, and with climate change, this means translating information into advocacy. The effects of climate change call for the many roles that medical providers take on: first responder to disaster, risk educator of patients and public, and — in an almost exact reenactment of Florence Nightingale’s work — defender of clean water, nutritious food, and sanitation.

The scope of climate-related effects on human health is simultaneously as broad as global drought and as specific as increased incidence of skin cancers. Health providers are uniquely positioned to address the health implications of climate change, providing education within the context of direct patient care and speaking with authority on policy decisions that affect public health.

Climate Change and Human Harm

Health providers warn that climate change can cause or increase the severity of a range of dangerous respiratory ailments.

Scientists are still working to understand the full impact of climate change on human health; however, there are existing studies that show severe effects on human health as a result of environmental hazards. According to the National Institutes of Health, there are several key areas of concern regarding climate and health, and many opportunities for health providers to offer prevention and education.

THREATS TO RESPIRATORY HEALTH

Implications: Lung disease, allergies, and asthma will be worsened by longer allergy seasons and deteriorating air quality.

Health Provider Recommendations: Support staying inside on poor air quality days and remind vulnerable populations to adhere to medical treatment plans and medication.

VECTOR-BORNE DISEASES

Implications: Ticks and mosquitoes will be more active for longer and range farther.

Health Provider Recommendations: Encourage people to use bug repellent when outdoors or in any areas with insects. Monitor and record reports of disease outbreaks. Inform others about signs and symptoms of diseases and when to call a health care provider.

WEATHER-RELATED ILLNESS AND INJURY

Implications: Extreme temperature fluctuations affect outdoor laborers, children, pregnant women, and older adults and can cause pulmonary and cardiovascular problems and dehydration. In addition, increased particulate matter, ozone concentrations, and extreme weather events may trigger stress and respiratory issues that lead to heart disease.

Health Provider Recommendations: Educate about the risks of heat exposure. Ensure access to air conditioning for vulnerable or older adults and homeless populations. Also, encourage people to drink enough water throughout the day and not just when they feel thirsty.

MENTAL HEALTH AND STRESS DISORDERS

Implications: Extreme weather can be destructive to property and quality of life, often resulting in the loss of homes, belongings, and loved ones. Prolonged exposure to these stressful experiences can manifest psychologically as people try to navigate grief and loss with interrupted access to care.

Health Provider Recommendations: Encourage others to speak openly about their grief to reduce stigma. Identify gaps in mental health literacy and teach patients about signs and symptoms of mental health risks. In addition to educating, refer at-risk patients to a mental health provider as soon as possible.

Spreading the Word About Disaster Preparedness and Dangers

One result of climate change is more frequent and more powerful natural disasters, like hurricanes. Pictured are specialists testing the flooded river during Hurricane Harvey
Flooding after hurricane Harvey

In a 2018 World Health Organization report on climate change and health,  experts state that “globally, the number of reported weather-related natural disasters has more than tripled since the 1960s.” For this reason, it’s essential that health providers inform their communities about disaster preparedness and dangers. The best time to get involved is before a disaster; therefore, it’s critical for providers to leverage any one-on-one time with patients to address holistic health and emergency concerns. Special attention should be paid to those who may be vulnerable in the wake of disasters. For example, this could include people with chronic conditions, physical disabilities, or respiratory diseases; infants and children; pregnant women; and older adults.

Thin Ice: The Life-Threatening Effects of Climate Change

Air Temperature Change

  • Increase in heat exhaustion
  • Spread of disease vectors among animals, insects, and people

Air Pollution

  • Increased movement of airborne allergens and diseases
  • Higher risk of respiratory illness  
Climate change affects pets, too. Rescued dogs from Hurricane Harvey are being treated by volunteer health providers.
Volunteer care providers treat pets rescued after hurricane Harvey.

Extreme Weather

  • Chronic stress
  • Geographic displacement
  • Loss of loved ones and pets

Water Temperature Change

  • Changes to coastal ecosystem health that will affect food supply and erosion
  • Increased likelihood of extreme precipitation, drought, or flooding
  • Water contamination due to harmful chemicals and pathogens

Food Security

  • Malnutrition, especially for prenatal or early childhood development
  • Exposure to pesticides and toxic contaminants
  • Increase in harmful algal blooms

Source: Health Effects of Climate Change.  U.S. Department of Health and Human Services, 2018. Accessed April 23, 2019.

All health providers are important voices in preemptively educating patients about disaster preparedness, but nurses specifically make up a crucial part of disaster response.

More than 20,000 licensed and student nurses serve the Red Cross in a variety of roles — some as first responders and CPR educators and others as supervisors and organizational managers.

While the effect of climate-related health issues increases alongside the shortage of nurses and other medical providers, there’s great reason for all providers to advocate for change.

A Rising Tide Lifts All Boats: Advocacy for Climate-Related Health Policy

Nurses and other health providers are advocating for climate action.
Alliance of Nurses for Healthy Environments at September 2019 rally in D.C.

Climate change may be politically polarizing, but illness and injuries seen by first responders and health providers are concrete outcomes and can translate into loss of life on a global scale.

In a 2018 report on climate change and health that accounted for continued economic growth and medical progress, the World Health Organization stated that “climate change is expected to cause approximately 250,000 additional deaths per year between 2030 and 2050.” These fatalities are projected to come from the following climate-related health complications:

— 38,000 due to heat exposure in older adults

— 48,000 due to diarrhea

— 60,000 due to malaria

— 95,000 due to childhood undernutrition

Health providers can draw awareness to this dire need for attention at the policy and community levels. They can also share firsthand experience and research. This is an ethical duty that can result in widespread support of strong public health programs and climate justice.

How to Get Involved in Climate and Health Policy

In addition to in-person education with patients, health providers can do a variety of things to spread awareness about climate and health policy in their communities:

Leverage social media. Share articles with verified, evidence-based information on social channels. Use hashtags related to climate and health that make your posts easier to find. For example, #ActOnClimate, #Go100Percent, #Renewables, #SaveThePlanet, and #ClimateChange.

Continue your education. Request or attend an educational presentation from a trained professional, then collaborate with community organizations to educate people in your area. Volunteer with climate- or policy-focused organizations to gain perspective.

Participate in civic engagement. Call your representatives to let them know whether you support specific legislation. And always, vote in local and national elections.

Organizations for Further Reading or Involvement

If you are a health care provider looking to learn more about climate and health policy, you may wish to visit the websites of these organizations.

Citation for this content: [email protected], the online DNP program from the Simmons School of Nursing

Listen to the Chapter Podcasts for Jonas and Kovner's Health Care Delivery in the United States


Gain a better understanding of the current state of the US health care system and how it might impact your work and life.

You have Successfully Subscribed!