Caregiver Education

Overview and Description

A central goal of rehabilitation medicine is to restore or maintain function and independence. When complete independence cannot be achieved, a caregiver is often necessary for a patient to be able to return home. A nationally representative, population-based, online survey of 2,089 family caregivers published in 2019 showed that informal caregivers are managing medical and nursing tasks including medications, changing dressing, and handling medical equipment formerly offered by trained professionals.¹

The U.S. Census Bureau estimates by 2060, 1 in 4 Americans will be 65 years old or older.² As people age, the likelihood of needing assistance with instrumental (cooking, banking, shopping) and basic (bathing, dressing, toileting) activities of daily living (ADLs) increases. Older adults are at risk for higher rates of physical and cognitive comorbidity that affect their independence and are also more likely to have multiple chronic conditions that require complex support, management, and care. All these issues exert a profound impact on rehabilitation outcomes and are influenced greatly by the presence of a caregiver.

Health care providers including rehabilitation specialists should proactively identify the concerns of these informal caregivers and help them manage complex care of patients.

Relevance to clinical practice

In regards to postacute care, having an informal caregiver can improve a person’s functional potential and rehabilitation outcome in the following ways: (1) a patient with an identified caregiver is more likely to be admitted into an inpatient rehabilitation facility for intensive therapy because his or her potential for home discharge is greater than someone without a caregiver³; (2) in the subacute rehabilitation setting, a patient with a caregiver is much more likely to return home than be relegated to long-term care; and (3) once home, a patient with a caregiver has increased potential for improvement by virtue of the many duties the caregiver assumes (ADLs, medical tasks, care coordination).³ It is imperative for rehabilitation providers to support caregivers due to the pivotal role that caregivers have.

Figure 1: Caregiver roles in different rehab setting outcomes. In the IRF setting, patients with caregivers are more likely to be admitted. In the SNF setting, patients with caregivers are more likely to go home. In the home setting, patients tend to have better improvement.

Caregiver burden is impairment specific. Caregivers who only provide assistance with instrumental activities of daily living spend an average of 85 hours per month providing care whereas those who care for adults with 3 or more self-care mobility needs spend about 253 hours per month, a nearly three-factor difference.⁴

Caregiver demographics

The first national profile of caregivers was published in 1997 by The National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP).⁵ A 2020 update of the initial findings showed that one in five are unpaid caregivers and 24% of caregivers caring for two or more recipients.⁶  Twenty-eight percent of caregivers are also simultaneously caring for an aging parent or older adult while raising children.⁷ In 2019, the AARP Public Policy Institute also published results from a national online survey of 2,089 family caregivers to determine the medical tasks they perform.¹ According to the NAC, U.S. caregivers number 66 million and comprise close to one in five of the adult population. Most caregivers are women (61%). Both caregivers (mean age, 49.4 y) and care recipients (mean age, 68.9 y) are aging as the population ages.⁶ Therefore, caregivers are at risk for the same age-related morbidities and chronic conditions as experienced by those for whom they care.

Table 1: Caregiver metrics

Caregiver’s work

Caregivers provide help for activities of daily living (ADLs; 60%), instrumental ADLs (IADLs; 99%), medical and nursing tasks (58%).^5,6 Many caregivers may be taking this role of medical and nursing tasks without adequate and affordable services and support in place.⁶ Caregivers spend an average of 20 hours a week providing care. It was also found that 43% of caregivers were in cohabitating dyads.⁶All provide assistance with instrumental ADLs, particularly transportation, housework, shopping, and preparing meals.^5,6 Over half provide help with basic ADLs, most commonly transfers, dressing, and bathing. In addition to ADLs, many caregivers also provide help with medical or nursing tasks (e.g., managing medications and medical devices, dressing wounds, monitoring vital signs). Most caregivers who report providing intensive medical or nursing care believe they are preventing their relative from being institutionalized.^1,5-7,9 While many caregivers feel their role gives meaning, these positive emotions often coexist with feelings of stress.⁶ COVID-19 pandemic created uncertainty in the caregiver journey and new caregivers. A survey conducted during March-August 2022 found nearly one-third of American adults were unpaid caregivers.⁸ Many caregivers had to adapt how they carry out their caregiving responsibilities.⁷ Caregivers are required to exercise critical thinking especially when their loved ones require medical care. Potential job loss, income insecurity, and unavailability of child support or dependent care additionally added caregiver stress during the pandemic.⁹ Many caregivers also reported that caregiver burden increased during the pandemic.¹⁰

Stress of caregiving

Caregiving research repeatedly concludes that caregiving can be a rewarding endeavor; however, it can add both physical and psychological stress and strain that may adversely affect the caregiver and, ultimately, the care receiver.¹¹ Nationally, one-third of older caregivers feel that their situation is stressful, and 17% feel that their health has worsened with caregiving, especially if their duties have taken time away from other family and friends. Working caregivers report alterations in work schedules, and 20% have needed to take a leave of absence to deal with caregiving issues.⁵ Caregivers who spend 40 or more hours a week providing care report greater declines in their own health. Complaints include poor sleep, fatigue, stress, pain, and depression. In a 2022 cross-sectional survey of 19,767 US adults from the National Sleep Foundation, found caregivers experienced impaired sleep, with high prevalence of insomnia and sleep less than 6 hours, especially in dual caregivers (adults and children).⁸ Understandably, half of caregivers who report declining health say that it has affected their ability to provide care.^5,6

Caregiver needs

Given the challenges in providing care, over three-quarters of caregivers feel they need help and information. Reported sources of information include healthcare professionals, the Internet, and other family, friends, or caregivers. The highest-rated areas of concern for caregivers include safety, mobility, incontinence, challenging behaviors, managing stress, future planning needs, and talking to physicians and health professionals.^5-7,9,11

Rehabilitation team interventions to improve quality of life

Because caregivers rely on rehabilitation physicians and allied health professionals for much of their information and support, we must be aware of these issues in order to educate and support caregivers.¹² For example, given that falls are the leading cause of unintentional injury in older adults, physicians must be able to perform a complete medical and fall evaluation.¹³ Bowel and bladder issues must be attended to because they dramatically increase the burden of care, and many accidents and falls occur in the bathroom.¹² Challenging behaviors must be addressed with a particular focus on depression, dementia, and delirium issues.¹⁴ Consultation with a geriatric psychiatrist may be necessary in difficult or refractory cases. Physicians must collaborate with the caregiver and patient to formulate a plan of care that is understood and is reasonable to carry out, providing optimal care. Various studies have shown that caregivers interact and navigate the healthcare system in various ways whether at medical visits, hospital discharge process, or long-term care. Collaborating with caregivers, whether through shared decision-making or coordinating care, allows for better outcomes, whether decreased healthcare utilization costs or reduced readmissions. However, it is also important to recognize the limitations of caregivers, as they should not be expected to provide clinical care or medical tasks without adequate training and support.¹⁵

Physical and occupational therapy are often vital to prevent falls and functional decline and keep patients in the community. A home-based exercise program to reduce falls (e.g., Otago¹⁶ program) focuses on balance, strength, and mobility using exercises that can be performed at home without special equipment. Likewise, in-home face-to-face programs or teleprograms to train caregiving dyads to safely perform tasks using the appropriate assistive technology (e.g., super poles, slide boards, walkers) are designed to prevent injury to the caregiver and recipient during ADLs.^17,18 A home evaluation is essential to eliminate hazards (e.g., throw rugs, poor lighting) and to ensure proper equipment (e.g., grab bars, raised toilet seats) is in place. Caregivers or family members must be included in these evaluations and trainings because they are instrumental in carrying out any home modifications.^9,17

A consultation with a geriatrics case manager may be helpful in setting up outpatient or home therapy services, home nursing assessment, and home health aides.^9,13 Social workers can advise on adult day care programs, assisted living, short-term rehabilitation, and long-term care facilities. Caseworkers may also help the caregiver apply for financial assistance. Consultation with a lawyer may be necessary to set up a living will and health care power of attorney to designate a person who will make medical decisions if the patient becomes incapacitated.

Toward the end of life, palliative care and hospice can provide much-needed patient and caregiver support with enhanced counseling, respite, and bereavement services, and 24-hour nursing care during the last days of life.

Figure 2: Rehabilitation Team Interventions and the Various Members

Cutting Edge/Unique Concepts/Emerging Issues

The use of technology is increasingly prevalent to support caregivers, whether enhancing access to care, managing caregivers, or providing education. Most caregivers use the Internet as a source of information and support. Organizations such as the National Alliance for Caregiving, Family Caregiver Alliance, Alzheimer’s Association, and AARP have developed information and support resources for caregivers. Additionally, developing health mobile applications can also provide support and information, such as the Care4Caregiver app through the VA, which includes a self-assessment tool to track caregiver stress and community resources. Newer technologies, such as home monitoring and tracking systems, can also provide ways to monitor health status and healthcare coordination.¹⁵

Furthermore, there are gaps in financial support for caregivers. Many caregivers are unpaid family members and policy around compensation, whether through Medicaid or the Family and Medical Leave Act (FMLA), fluctuates from state to state. FMLA has defined caregivers as, “child, spouse, or parent with a serious health condition,” which omits many family members who may need care, such as in-laws, siblings or grandparents. Additionally, many benefits and resources for Medicaid and FMLA vary based on the state, creating disparities. Fourteen states either already or will provide compensation for caregiving and thirteen states expanded their definition of caregivers beyond the FMLA definition. However, compensation, length of paid leave and eligibility criteria vary drastically by state.^19,20 Redefining caregiving policy could formalize caregiving from informal to formal and provide additional financial support for caregivers.

Gaps in Knowledge/Evidence Base

There have been numerous interventional trials that have shown modest improvements in caregiver psychological and health outcomes, predominantly addressing caregiver burden, stress, and depressive symptoms. A limitation of many of these studies is that the caregiving and care recipient populations are heterogeneous. For example, caring for a person with mobility issues from a hip fracture is very different than caring for an individual with dementia and behavioral problems. Even within a subgroup of dementia patients, caregiver outcomes may vary depending on the severity of the cognitive or behavioral problems of the care recipient.^9,12 Studies will benefit from a common set of measurements and outcomes as well as the feasibility of sustaining interventions and cost for widespread dissemination. Further, studies may need adaptations for different population groups, whether in format, language, or health literacy. Technology use is promising for caregiving. Challenges are issues related to equity, interoperability, lack of standardization, and human-centric design. Rehabilitation professionals can aid in this endeavor by actively soliciting information from their partners in the rehabilitation process, namely the patient and caregiver.

References

1. Home Alone Revised: Family caregivers providing complex care. https://www.aarp.org/content/dam/aarp/ppi/2019/04/home-alone-revisited-family-caregivers-providing-complex-care.pdf accessed 10/10/2020.
2. Demographic Turning Points for the United States: Population Projections for 2020 to 2060: 2020. Available at: https://www.census.gov/library/publications/2020/demo/p25-1144.html. Accessed October 10, 2023.
3. Boult C, Green AF, Boult LB, Pacala JT, Snyder C, Leff B. Successful models of comprehensive care for older adults with chronic conditions: evidence for the Institute of Medicine’s “Retooling for an Aging America” report. J Am Geriatr Soc.2009;57:2328-2337.
4. Freedman VA, Spillman BC. Disability and care needs among older Americans. Milbank Q. 2014 Sep;92(3):509-41. doi: 10.1111/1468-0009.12076. PMID: 25199898; PMCID: PMC4221755.
5. The National Alliance for Caregiving, AARP. Caregiving in the US 2009. Available at: http://assets.aarp.org/rgcenter/il/caregiving_09_fr.pdf. Accessed February 11, 2014.
6. The National Alliance for Caregiving, AARP. Caregiving in the U.S. 2020 Report Available at: https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf Accessed October 30 2020.
7. Support Family Caregivers. The National Alliance for Caregiving, https://www.caregiving.org/wp-content/uploads/2020/05/Caregiver-COVID19-Group-Statement-03.30.20.pdf. Accessed October 30, 2020.
8. Czeisler, M. É., Weaver, M. D., Robbins, R., Barger, L. K., Varma, P., Quan, S. F., Lane, R. I., Howard, M. E., Rajaratnam, S. M. W., & Czeisler, C. A. (2023). Sleep and mental health among unpaid caregivers of children, adults, and both: United States, 2022. Sleep Health. https://doi.org/10.1016/j.sleh.2023.08.013
9. COVID-19 pandemic considerations for caregiving advocates. National Alliance for Caregiving. https://www.caregiving.org/wp-content/uploads/2020/05/NAC_Caregiving-and-COVID19-Key-Issues_March-30-2020.pdf. Accessed October 30, 2020.
10. Turner, R. L., Reese-Melancon, C., Harrington, E. E., & Andreo, M. (2023). Caregiving During the COVID-19 Pandemic: Factors Associated With Feelings of Caregiver Preparedness. Journal of Applied Gerontology : The Official Journal of the Southern Gerontological Society, 42(10), 2089–2099. https://doi.org/10.1177/07334648231182242
11. Zarit SH, Edwards AB. Family caregiving: research and clinical intervention. In: Woods B, Clare L, eds. Handbook of Clinical Psychology and Ageing. 2nd ed. Sussex, UK: Wiley; 2008.
12. Rubenstein L. Falls in older people: epidemiology, risk factors and strategies for prevention. Age Ageing. 2006;35:ii37-ii41.
13. Tomas S, Mackintosh S, Halbert J. Does the “Otago Exercise Programme” reduce mortality and falls in older adults?: a systematic review and meta-analysis. Age Ageing. 2010;39:681-687.
14. Schulz R, Sherwood P. Physical and mental health effects of family caregiving. Am J Nur.2008;108:23-27.
15. National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. https://doi.org/10.17226/23606
16. Gibson MJ, Kelly KA, Kaplan AK. Family caregiving and transitional care: a critical review. 2012. Available at: http://www.caregiver.org/caregiver/jsp/content/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf. Accessed February 11, 2014.
17. Griffiths PC, Sanford JA. ADL task performance in mobility impaired older dyads: preliminary data from the CG ASSIST pilot. Assist Technol Res Ser.2013;33:446-451.
18. Sanford JA, Griffiths PC. Using remote tele-video technology to provide in-home AT assessment and training to mobility-impaired elders and their caregivers. Assist Technol Res Ser. 2013;33:741-747.
19. Raj, M., & Singer, P. M. (2021). Redefining Caregiving as an Imperative for Supporting Caregivers: Challenges and Opportunities. Journal of General Internal Medicine, 36(12), 3844–3846. https://doi.org/10.1007/s11606-021-06932-0
20. National Partnership for Women & Families. (2023). State Paid Family & Medical Leave Insurance Laws. https://nationalpartnership.org/wp-content/uploads/2023/02/state-paid-family-leave-laws.pdf

Original Version of the Topic

Paul Thananopavarn, MD, Wei Huang MD, PhD, Patricia Griffiths, PhD. Caregiver Education. 9/20/2014

Previous Revision(s) of the Topic

Mooyeon Oh-Park, MD. Caregiver Education. 12/29/2020

Author Disclosures

Jessica Yang, DO
Nothing to Disclose

Casey Schoenlank, MD
Nothing to Disclose