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, handling medical equipment formerly offered by trained professionals.1
The increasing population of older adults brings with it a concomitant rise in the number of caregivers required to help them age in place. The U.S. Census Bureau estimates that the number of people over the age of 65 years will reach 80 million by 2050because, in large part, of the aging of the baby boom generation. 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 and are also more likely to have multiple chronic conditions that require complex support, management, and care.All of 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 Clearly, caregivers fulfill a pivotal role in the rehabilitation process, providing the foundation of care for older adults in the community. It is, therefore, incumbent on rehabilitation professionals to learn more about these caregivers and find ways to support and encourage them through their challenges.4
Caregiver burden is impairment specific. For example, stroke survivors with spatial neglect requires care and assistance of 4 hours per day and general supervision of 17 hours per day compared to those without.5 Therefore, rehabilitation specialists and services should take into account the specific impairment of patients to alleviate the burden of caregivers.
The first national profile of caregivers was published in 1997 by The National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP).6 A 2020 update of the initial findings showed that one in five are providing unpaid care to an adult with health or functional needs and 24% caring for two or more recipients.7 Twenty-eight percent of caregivers also “sandwiched” between caring for an aging parent or older adult while raising children.8 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.7 Therefore, caregivers are at risk for the same age-related morbidities and chronic conditions as experienced by those for whom they care.
Caregivers provide help for activities of daily living (ADLs; 60%), instrumental ADLs (IADLs; 99%), medical and nursing tasks (58%).6,7 Many caregivers may be taking this role of medical and nursing tasks without adequate and affordable services and support in place.7 Caregivers spend an average of 20 hours a week providing care; however, this increases to 43% for cohabitating dyads.7All provide assistance with instrumental ADLs, particularly transportation, housework, shopping, and preparing meals.6,7Over 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 (eg, 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.1,6-9 While many caregivers feel their role gives a meaning, these positive emotions often coexist with feelings of stress.7 COVID-19 pandemic created uncertainty in the caregiver journey and new caregivers. Many caregivers needed to adapt how they carry out their caregiving responsibilities.8 Caregivers 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
Stress of Caregiving
Caregiving research repeatedly concludes that caregiving can be a rewarding endeavor; however, it can add both physical and psychologic stress and strain that may adversely affect the caregiver and, ultimately, the care receiver.10 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.6 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. Understandably, half of caregivers who report declining health say that it has affected their ability to provide care.6,7
Given the challenges in providing care, over three quarters of caregivers feel they need help and information. Reported sources of information include health care professionals, 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.6-10
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.11 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 falls evaluation. 12 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.11 Challenging behaviors must be addressed with a particular focus on depression, dementia, and delirium issues.13 Consultation with a geriatric psychiatrist may be necessary in difficult or refractory cases. Physicians must corroborate with the caregiver and patient to formulate a plan of care that is understood and is reasonable to carry out.4 This may mean investing extra time answering questions and writing down instructions for care and verifying and simplifying medications to prevent excess medication and errors.4,5According to one recent report, involving the caregiver in care and discharge planning results in improved patient satisfaction and outcomes and continuity of care; however, we caution that caregivers should not be expected to provide clinical care or perform medical tasks without adequate training and support.11
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 (eg, Otago14program) 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 (eg, super poles, slide boards, walkers) are designed to prevent injury to the caregiver and recipient during ADLs.15,16 A home evaluation is essential to eliminate hazards (eg, throw rugs, poor lighting) and to ensure proper equipment (eg, 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.4,8,15,17
A consultation with a geriatrics case manager may be helpful to set up outpatient or home therapy services, home nursing assessment, and home health aides.8,11 Social workers can advise on adult day care programs, assisted living, short-term rehabilitation, and long-term care facilities. Case workers may also help the caregiver applying 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.
Cutting Edge/ Unique Concepts/ Emerging Issues
Recent survey among caregivers showed that 71% of caregivers are interested in using technology to support their caregiving tasks although only 7% are using technology in the market.18 Technologies for scheduling, organizing, and medication refill and delivery are used most. More than three quarters of caregivers expressed interest in technology that helps them check on or monitor a loved one and medication management. The barriers to adapt technology include cost and complexity.18 With training and motivation, older caregivers will readily adopt new technologies,19,20 particularly when barriers to use are perceived as low.19-20 The Internet provides a portal to a variety of support services that can help both caregiver and care recipient. Sites (eg, caregiver.org, caregiver.com, caregiveraction.org, aarp.org) have extensive links to advice columns and experts, care for the caregiver support groups, resource locators, and financial calculators that directly address the concerns and burdens of the caregiver.
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 population is 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 behavior 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.8,10 Upcoming challenges to caregiver intervention trials include objectively measuring caregiving time, outcome-based care quality (eg, skin tears/pressure ulcers, urinary tract infections, flu vaccination rates), and extended health and economic benefits to the care recipient.17 Studies will benefit from a common set of measurements and outcomes. Technology use is promising for caregiving. Challenges are issues related to equity, interoperability, lack of standards 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.
- Home Alone Revised: Family caregivers providiging 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.
- Administration on Aging. A profile of older Americans: 2012. Available at: http://www.aoa.gov/AoARoot/(S(2ch3qw55k1qylo45dbihar2u))/Aging_Statistics/Profile/2012/docs/2012profile.pdf. Accessed February 11, 2014.
- 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.
- Uphold CR. Transitional care for older adults: the need for new approaches to support family caregivers.J Gerontol Geriatric Res. 2012;1:e107.
- Chen P. Fyffe D.C., Hreha K. Informal caregivers’ burden and stress in caring for stroke survivors with spatial neglect: An exploratory mixed-method study. Topics in Stroke Rehab. 2016;24:24-33.
- 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.
- The National Alliance for Caregiving, AARP. Caregiving in the U.S. 2020 ReportAvailable 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.
- 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.
- 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.
- 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.
- Rubenstein L. Falls in older people: epidemiology, risk factors and strategies for prevention.Age Ageing. 2006;35:ii37-ii41.
- 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.
- Schulz R, Sherwood P. Physical and mental health effects of family caregiving.Am J Nur.2008;108:23-27.
- 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.
- 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.
- 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.
- United Healthcare. e-connected family caregiver: bringing caregiving into the 21st century. 2011. Available at: http://www.caregiving.org/data/FINAL_eConnected_Family_Caregiver_Study_Jan%202011.pdf. Accessed February 11, 2014.
- Caregivers & Technology: what they want and need. AARP, April 2016. https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2018/caregivers-technology-needs.doi.10.26419-2Fres.00191.002.pdf. Accessed October 30, 2020.
- Rogers WA, Fisk AD. Toward a psychological science of advanced technology design for older adults.J Gerontol B Psychol Sci Soc Sci. 2010;65:645-653.
- Van Houtven CH, Voils CI, Weinberger M. An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts.BMC Geriatr.2011;11:1-18.
Original Version of the Topic
Paul Thananopavarn, MD, Wei Huang MD, PhD, Patricia Griffiths, PhD. Caregiver Education. Published 9/20/2014
Mooyeon Oh-Park, MD
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