Miles Apart Yet Close to Heart: Long Distance Caregiving

by Dr.Terry Ann Sturm, DNP, GNP-C, CRNP & Dr. Joyce Varner, DNP, GNP-BC, AGPCNP-C, GCNS
Key Words: Informal caregivers, long-distance caregivers, distance care giving, care giving costs, aging parents, frail older person, burden of care

There are no conflicts of interest for either author Employer University of South Alabama.

Abstract

The prevalence of long-distance care givers is growing. As America ages and the cost of healthcare increases, there will be a larger role played by the distant provider. Family bonds together with a mobile society often are at odds as the distant care provider tries to meet personal obligations while attempting to provide care to a loved one. With reported high levels of stress, economic hardship, and strained family relationships the distant care giver faces many obstacles. These may include communication gaps with healthcare providers, a job loss, an increased amount of daily stress, and guilt related to the inability to present for the care recipient. There remains a need to continue to explore the role of the distant care giver and possible solutions to meet their needs.

Summary Statement of Implications for Practice

What does this research add to existing knowledge in gerontology?

  • In today’s changing healthcare environment, the role of a long-distance caregiver for frail older people has increasing importance.
  • Reviewing the issues faced by the long-distance caregiver is essential for the primary care provider and healthcare team involved with managing the care of a frail older person.

What are the implications of this new knowledge for nursing care with older people?

  • The utilization of available technological support systems may provide opportunities that lessen the burden of care by long-distance care providers.
  • As the older population continues to expand and the burden on the healthcare system continues, the role of the unpaid and informal caregiver is increasing.

How could the findings be used to influence policy or practice or research or education?

  • The need for current research on long-distance caregivers is needed to more fully understand the need to develop or modify a model of care that incorporates the long- distance caregiver.
  • Following more in-depth research, establishing guidelines promoting positive outcomes may lessen the burden of care for long-distance providers.

Miles Apart Yet Close to Heart: Long Distance Caregiving

Consider a geographically separated family attempting to care for a frail older person adrift in a sea of healthcare needs. The family, separated by many miles and hours of travel, is often is unable to be at the bedside of their loved one to help when necessary as informal care givers. A communication breakdown may exist between health care providers and family; between family members attempting to understand and promote appropriate care for the care recipient; between the care recipient and health care providers seeking to provide the appropriate and desired care. Thus, making the daily stress and frustration for the care recipient, family, and health care providers seem never ending. Adding the financial constraints of travel, time away from work, and unplanned expenses to the long-distance caregiver’s role (Cagle & Munn, 2012) further hinders the possibilities of positive outcomes.

According to the U.S. Census Bureau (2014), over the next 13 years there is a projected increase from 47 million in 2015 to 74 million in 2030 of the 65-year-old and over population. The 2017 estimate of the 70-80-year-old population is 32 million with half categorized as widowed, single, separated, divorced, or married and living without the spouse (U.S. Census Bureau, n.d.). By 2020 close to 14 million caregivers will be long distance care (LDC) providers. The average mile distance between LDC providers and the care recipient is over four hundred miles with about seven hours travel time (“Caregiver statistics,” 2016).

Compared to proximate care givers, the LDC provider spends approximately $9,000 or twice as much as the closer family member, per year, on the care recipient’s needs (Reinhard, Feinberg, Choula, & Houser, 2015). As 21% of all informal care providers earn less than $36,000, financial issues remain a factor in providing long distance care for many (Witters, 2011). With anticipated general healthcare costs rising to approximately 20% of the total US economy by 2024 with the increase in the aging population, the need for the informal caregiver will increase (Keehan et al., 2015). The necessity of informal care givers, which is one in six US workers including the distance care givers, is expected to expand further, with over 50% of all informal caregivers stating their work performance is impacted by providing care (Witters, 2011).

Emotional distress experienced by caregivers is based on burden of care and length of time the care is provided (National Alliance for Caregiving and AARP Public Policy Institute, 2015). Research conducted by MetLife Mature Market Institute (2004) finds the LDC provider’s emotional stress level higher at 47% as compared to 28% of care givers in closer proximity. One fifth of all care providers feel their personal health has deteriorated (Evercare, National Alliance for Caregiving [NAC], 2007)). Difficulties in communication between the LDC providers and healthcare providers can extend to other healthcare disciplines through misunderstandings, which creates further stress for all parties involved (Cagle & Munn, 2012). Electronically sharing information between health care providers and LDC providers may lessen the opportunity for misunderstandings by all parties. It is reported that approximately 80% of respondents to a Robert Wood Johnson Foundation (“RWJ,” 2011) sponsored study indicated a willingness to share health information with families, which would prove beneficial to LDC providers.

The role of the LDC provider is expected to grow over the next few decades as the population ages. While similar challenges exist between all informal caregivers, the LDC provider has the additional burdens of increased emotional stress, time and financial constraints, frequent communication barriers between all involved, and the inability to always be present for the care recipient. Based on the initial scenario, this discussion will present general LDC provider issues relating to older care recipients, while presenting possible interventions essential for positive and supportive outcomes for the care recipient and LDC provider.

Defining the Dynamics of Distance Care

Today’s family is complex, often with remarriages, cohabitation, competing needs of adult members, widowhood, divorces, family members relocating from home, and an older family member; a parent, parents, or sibling living alone. These circumstances may lead to a decline in the support of the aging family member by other members of the family, particularly for those families separated by distance and time which can affect the care recipient negatively as the presence of family has been shown to be beneficial to the well-being and health of the care recipient (Silverstein & Giarrusso, 2010, Ao, Jiang, & Zhao, 2016). As the older person moves into a care recipient role due to declining health or diminished abilities to maintain self, the family is often enlisted as informal and unpaid caregivers and the care recipient may require longer periods of care with a family member taking that responsibility. Prevalent conditions that may require care among care recipients include diabetes, dementia, cancer, and frailty. The frail older person requires approximately 13 hours of weekly care (Kim & Schultz, 2008), and is usually an 82-year-old female, with 50% of her care provided by children. Additionally, 68% of the caregivers are employed while providing care over an average period of 1-4 years (Kim & Schultz, 2008). The frail older person requires assistance with activities of daily living, primarily medication management and getting up from a chair or bed along with shopping, management of banking, meal preparation, and grocery shopping with three-fourths of LDC providers involved with this care (Roff, Martin, Jennings, Parker, & Harmon, 2007).

Current anticipated increases in the costs of medical services and the overall anticipated increase in all healthcare expenditures (Keehan et al., 2015) may further the demand for family supported recipient care, based on the need for economically viable care alternatives to assist the older person (Bookman & Harrington, 2007).

Hospitalizations, discharges from hospitals, long term care placement (Denson, Winefield, & Beilby, 2013), or the desire of the older care recipient wishing to remain at home if possible (Gregory, Mackintosh, Kumar, & Grech, 2017), may add more challenges to providing care. Inserting the average of 400 one-way miles traveled several times throughout a month to provide care (MetLife, 2004) into the life of the caregiver attempting to meet the demands of caregiving, creates unique circumstances for all involved.

Additional LDC time is spent with phone calls to the care recipient, health care providers, proximate caregivers, and siblings as a means of extending LDC availability. Maintaining an open channel of communication with and about the care recipient can be time consuming, often taking an hour or two daily if appointments, services, and updates on care are needed. Regardless, the LDC provider may feel phone contact spent with the care recipient is beneficial for the daily emotional well-being of both recipient and care provider, as often family bonds are strengthened during this time (Mazanec, Daly, Ferrell, & Prince-Paul, 2011). It is estimated that most LDC providers share the responsibility of care with other family members, often siblings, spending over 20 hours a month on actual recipient care if supplemental family support is available (MetLife, 2004). On average a care recipient may require between 23-41 hours per week of care (NAC, 2007).

The Challenges of Distance Care

Communication concerning the health status of the care recipient remains a continuing point of frustration for the LDC provider. The welfare of the care recipient is a primary focus and the frequent breakdown of communication channels between all parties involved related to distance, add to the level of stress experienced by the LDC provider as well as others involved in the care. Often the older care recipient will fail to share information with the LDC provider as a means of preventing further stress on the LDC provider (Mazanec et al., 2011). A care provider hampered by distance is often unable to attend health care appointments, be present during procedures, assist with important health decisions, or be involved with events such as discharges or admissions to a healthcare facility, limiting the quality and consistency of care for the care recipient.

Accompanying the care recipient to an appointment facilitates communication through the interaction between the health care providers, the care recipient, and the LDC provider promotes higher positive outcomes for the patient when the companion is viewed as an advocate (Wolff & Roter, 2011, Reinhard et al., 2015). Generally, approximately one half of older adults are accompanied by family to outside health care sources, with one third of those companions, adult children (Wolff & Roter, 2011). The LDC provider is at a disadvantage and often may be unable to attend, requesting changes in appointment times that may delay necessary treatments or procedures for the care recipient. Inability to thoroughly discuss the health issues and needs of the care recipient through attempted distance communication via emails or phone such as waiting for a health care member’s response while unable to be present at an appointment with the healthcare provider and care recipient, adds to the frustration. This may lead to the in and out scenario of the LDC provider’s visit: in one day and back home in a day or two, all the while attempting to resolve issues and meet the needs of the care recipient in a limited time frame (Mazanec et al., 2011). Frustration over the brief time spent with the care recipient expands to the health care team as the LDC provider attempts to micromanage care to compensate for the absence from the care recipient’s life, causing upset within the health care team (Mazanec, 2012). In addition, when there are caregivers closer to the recipient and an LDC provider is present there may be a sense of intrusion felt by the onsite care provider, often a sibling or close relative, that creates disharmony in the family and care relationships while adding to LDC provider’s sense of guilt due to the inability to participate fully in the needed care (Kim & Schultz, 2008). Conflicts founded on specific health care needs, communication issues, and existing family dynamics felt by both the LDC provider and care recipient may place the health of both at risk (Bevan, Vreeburg, Verdugo, & Sparks, 2012).

Finances and the employment status of the LDC provider impact the ability and availability to provide the care necessary to the care recipient. Out of pocket expenses by all informal care providers, including the LDC provider, may include housing, supplies, gifts for the care recipient, support services such as housekeeping or companionship, groceries, essential living expenses, pet care, and travel expenses. The LDC provider may feel particularly obligated to contribute financially due to the inability to be present on a regular basis, particularly for distance providers. It is estimated that approximately $14,000 is spent annually on the cost of LDC compared to $8,000 for the proximate care provider (NAC, 2007). Traveling to provide care may necessitate the use of the LDC provider’s vacation or sick leave time; unpaid leaves of absence; adding part-time work or cutting back work hours; or quitting work entirely. Half of the care providers with annual incomes of under $30,000 report worsening of their finances while approximately 25% of those in the over $100,000 annual income bracket report financial difficulties related to providing care (NAC, 2007). Full time employed LDC providers, or about two thirds of the LDC providers, and approximately one fifth employed part time LDC providers experience close to 20 hours of lost work monthly by providing care (Bledsoe, Moore, & Collins, 2010.)

Stress on the emotional and physical well-being of an LDC provider may be exacerbated by uncertainty related something as seemly simple as appropriate times to visit (Douglas, Mazanec, Lipson, & Leuchtag, 2016). This can be seen, for example, before or after a discharge from a hospital to home. Concern about the current well-being of the care recipient along with the financial pressures of travel place the LDC providers at a higher risk for mood disturbances and increased levels of anxiety. Moreover, the LDC provider has an increased risk for depression and general feelings of distress over the care recipient’s health and the inability to be present when needed (Mazanec, 2012).

Current and Future Implications for Distance Care

Technology that provides information appears to be the key for quality distance care. The importance of the LDC provider being included in a patient-family care partnership with health care providers should not be dismissed. Partnering with health care and proximate health care providers may reduce the levels of stress and financial burdens of LDC provider (Mazanec, 2012). Often health care providers find the perceived intrusion by the LDC provider as bothersome and disruptive. Addressing and providing support to the LDC provider through enhanced communication offerings, social media, and sharing pertinent information supports their role and may lessen tension between health care providers, proximate, and distance care providers (Wasilewski, Webster, & Stinson, 2016).

Online interactive meetings between the care recipient, health care collaborators, proximal, and distance caregivers are viable resources. Real time access through webcam technology or video conferencing at the appointment site allows the LDC provider be involved in decisions related to recipient care, thus providing a reduction in stress, mood disturbances, and anxiety through inclusion in the health care process (Douglas et al., 2016). The accessibility of smart phones and computer notebooks opens the door for such meetings. While the care recipient’s privacy remains a focus throughout the process, the desire of the care recipient to share information and even designate certain tasks to various informal care providers, as noted in a Robert Wood Johnson survey (2011), may provide another method of involving the LDC provider. Interaction between family care providers may include texting, FaceTime, or setting up personal communication applications such as Zoom (https://zoom.us), Zello (https://zello.com/app), or Life 360 (https://www.life360.com/family-locator/) which monitors the physical location of family members with rapid communication capabilities. Amazon provides an indoor Cloud Cam that is compatible with their Alexa system (https://www.amazon.com) allowing audio and visual communication between LDC providers, proximal care providers, and care recipients.

Social support groups, either online or in person, play an important part of LDC. By focusing on specific coping strategies, providing knowledge of available services in the locale of the care recipient, and expanding the social safety net, participation in these groups has been found to produce the positive outcomes of reduced anxiety, depression, and distress for the LDC provider (Bledsoe et al., 2010, Wasilewski et al., 2016). The support groups may be online or part of formal care givers’ organizations, providing real time support through local connections to other LDC providers.

Given the opportunity, a manager of care (MC) may be able to aid LDC providers attempting to maneuver through the melee of the care recipient’s health care needs. Through a partnership-based model of care with all caregivers, informal and LDC, a plan promoting common goals may be developed through collaboration with healthcare providers, with an understanding of each role (Gaugler, Potter, & Pruinelli, 2014). As the MC continues to assess the knowledge base of the LDC provider concerning the health of the care recipient, providing information about available financial, social support resources while maintaining the flow of information as a liaison between the LDC provider, proximate providers, healthcare teams and facilities, the stress of LDC may be reduced (Gaugler et al., 2014). As a liaison the MC may be able to provide information to the LDC concerning the care recipient that under normal circumstances would be unavailable, based on government regulations and privacy laws (Reinhard et al., 2015).

The cost to an individual providing LDC may be significant and particularly places an extra burden on those within a lower income bracket. Being aware of individual states’ employment laws, government agency regulations, as an example, Centers for Medicare and Medicaid Services (CMS), have put forth policies providing flexible time off for federal employees caring for family members. Additionally, some states and locales are working toward expanding paid sick days that can be used for caring for a family member, although job loss for extended leave may remain a risk in some states (Reinhard et al., 2015). There remains a need for the public to actively promote and support modifications to workers’ leave with flexibility and a guarantee of job security as a means of providing relief from the financial strain experienced by the LDC provider as well as employers (Keating, Fast, Lero, Lucas, & Eales, 2014). As reported in a 2011 poll by Gallup (Witters, 2011) the cost of informal care giving to the U.S. economy in lost work productivity totaled over 25 billion dollars annually.

Acknowledging the role of LDC providers in today’s health care setting is essential. While identifying the LDC provider seems to be coming more into focus, material on specific guidelines for professional healthcare providers remains sparse. Using a partnership centered model of care may be appropriate in alleviating stress for the LDC provider; however, the economic issues remain a strong, often negative factor, when attempting to meet the needs of a loved care recipient. In today’s fluid political atmosphere these economic issues may be difficult to amend. The need to actively explore, with ongoing research, the actual cost to the economy for lost productivity to the economy and the benefit of technological implementation surrounding the role of the LDC provider. Further exploration on the role of the MC within the family with LDC providers may define more clearly any outcomes provided by the presence of an MC.Research that specifically addresses the healthcare providers’ interactions with the LDC provider, may lead to a clearer understanding with improved interactions between all parties. The challenges of being an LDC provider are numerous. Distance, time, and finances are significant factors when living this role. Inadequate communication based on distances or relationships, either with professionals or within a family, adds to the stress and burden of caring for a loved one. While no perfect answer exists continuing to share experiences and knowledge provides a bridge to, hopefully, positive outcomes for all.

References
Ao, X., Jiang, D., & Zhao, Z. (2016). The impact of rural-urban migration on the health of the leftbehind parents. China Economic Review, 37, 126-139. https://doi.org/10.1016/j.chieco.2015.09.007

Bevan, J. L., Vreeburg, S. K., Verdugo, S., & Sparks, L. (2012). Interpersonal conflict and health perceptions in long distance caregiving relationships. Journal of Health Communication, 747-761. https://doi.org/10.1080/10810730.2011.650829

Bledsoe, L. K., Moore, S. E., & Collins, W. L. (2010). Long distant caregiving: An evaluative review. Ageing International, 35, 293-310. https://doi.org/10.1007/s12126-010-9062-3

Bookman, A., & Harrington, M. (2007). Family caregivers: A shadow workforce in the geriatric health care system? Journal of Health, Policy, Politics, and Law, 32, 1005-1041. https://doi.org/10.1215/03616878-2007-040

Cagle, J. G., & Munn, J. C. (2012). Long distance caregiving: A systematic review of the literature. Journal of Gerontological Social Work, 55, 682-707. https://doi.org/10.1080/01634372.2012.703763

Care giver statistics: Demographics. (2016). Retrieved from https://www.caregiver.org/caregiverstatistics-demographics

Denson, L. A., Winefield, H. W., & Beilby, J. J. (2013). Discharge-planning for long-term care needs: the values and priorities of older people, their younger relatives and health professionals. Scandinavian Journal of Caring Sciences, 27, 3-12. https://doi.org/10.1111/j.1471-6712.2012.00987.x

Douglas, S. L., Mazanec, P., Lipson, A., & Leuchtag, M. (2016). Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research. World Journal of Clinical Oncology, 7, 214-219. https://doi.org/10.5306/wjco.v7.i2.214

Evercare, National Alliance for Caregiving. (2007). Family caregivers-what they spend, what they sacrifice, Findings from a national survey [Survey results]. Retrieved from http://www.caregiving.org/data/Evercare_NAC_CaregiverCostStudyFINAL20111907.pdf

Gaugler, J. E., Potter, T., & Pruinelli, L. (2014). Partnering with caregivers. Clinics in Geriatric Medicine, 30, 493-515. https://doi.org/10.1016/j.cger.2014.04.003

Gregory, A., Mackintosh, S., Kumar, S., & Grech, C. (2017). Experiences of health care for older people who need support to live at home: A systematic review of the qualitative literature.

Geriatric Nursing, 38, 315-324. https://doi.org/10.1016/j.gerinurse.2016.12.001

Keating, N. C., Fast, J. E., Lero, D. S., Lucas, S. J., & Eales, J. (2014). A taxonomy of the economic costs of family care to adults. The Journal of the Economics of Ageing, 3, 11- 20. https://doi.org/10.1016/j.jeoa.2014.03.002

Keehan, S. P., Cuckler, G. A., Sisko, A. M., Madison, A. J., Smith, S. D., Stone, D. A., … Litonitz, J. M. (2015). National health expenditure projections, 2014-2024: Spending growth faster than recent trends. Health Affairs, 34, 1407-1417. https://doi.org/10.1377/hlthaff.2015.0600

Kim, Y., & Schultz, R. (2008). Family caregivers’ strains Comparative analysis of cancercaregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 20, 483-503. https://doi.org/10.1177/0898264308317533

Mazanec, P. (2012). Distance caregiving a parent with cancer. Seminars in Oncology Nursing, 4, 271-278. https://doi.org/10.1016/j,soncn.2012.09.010

Mazanec, P., Daly, B. J., Ferrell, B. R., & Prince-Paul, M. (2011). Lack of communication and control: Experiences of distance caregivers of parents with cancer. Oncology Nursing Forum, 38, 307-313. https://doi.org/10.1188/11.ONE.307-313

MetLife Mature Market Institute. (2004). Miles away: The MetLife study of long-distance caregiving [Findings of a study]. Retrieved from http://www.caregiving.org/pdf/research/milesaway.pdf

National Alliance for Caregiving and AARP Public Policy Institute. (2015). Caregiving in the U.S. [Research report]. Retrieved from http://www.aarp.org/content/dam/aarp/ppi/2015/caregiving-inthe-united-states-2015- report-revised.pdf

Patients ready to share information. (2011). Retrieved from https://www.rwjf.org/en/library/articlesand-news/2011/12/patients-ready-to-share- information.html

Reinhard, S. C., Feinberg, L. F., Choula, R., & Houser, A. (2015). Valuing the invaluable: 2015 update [Policy brief]. Retrieved from AARP Public Policy Institute website: http:www.aarp.org/ppi/

Roff, L. L., Martin, S. S., Jennings, L. K., Parker, M. W., & Harmon, D. K. (2007). Long distance parental caregivers’ experiences with siblings: A qualitative study. Qualitative Social Work, 6, 315-334. https://doi.org/10.1177/1473325007080404

Silverstein, M., & Giarrusso, R. (2010). Aging and family life: A decade review. Journal of Marriage and Familly, 72, 1039-1058. https://doi.org/10.1111/j.1741-3737.2010.00749.x

U.S. Census Bureau. (2014). 2014 national population projection tables (np2014-t-3). Retrieved from https://www.census.gov/data/tables/2014/demo/popproj/2014-summary-tables.html

U.S.Census Bureau. (n.d.). Current population survey [CPS table creator]. Retrieved from https://www.census.gov/cps/data/cpstablecreator.html

Wasilewski, M. B., Webster, F., & Stinson, J. N. (2016). Adult children caregivers’ experiences with online and in-person peer support. Computers in Human Behavior, 65, 14-22. https://doi.org/10.1016/j.chb.2016.08.001

Witters, D. (2011). Caregiving costs U.S. economy $25.2 billion in lost productivity. Retrieved from http://news.gallup.com/poll/148670/caregiving-costs-economy-billion-lost- productivity.aspx

Wolff, J. L., & Roter, D. L. (2011). Family presence in routine medical visits: A meta-analytical review. Social Science & Medicine, 72, 823-831. https://doi.org/10.1016/jsocscimed.2011.01.05